Developmental Disabilities Program, 44795-44827 [2015-18070]

Agencies

• DEPARTMENT OF HEALTH AND HUMAN SERVICES

[Federal Register Volume 80, Number 143 (Monday, July 27, 2015)]
[Rules and Regulations]
[Pages 44795-44827]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 2015-18070]



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Vol. 80

Monday,

No. 143

July 27, 2015

Part VII





Department of Health and Human Services





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45 CFR Parts 1385, 1386, 1387, et al.





Developmental Disabilities Program; Final Rule

Federal Register / Vol. 80 , No. 143 / Monday, July 27, 2015 / Rules 
and Regulations

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DEPARTMENT OF HEALTH AND HUMAN SERVICES

45 CFR Parts 1385, 1386, 1387, and 1388

RIN 0970-AB11


Developmental Disabilities Program

AGENCY: Administration on Intellectual and Developmental Disabilities 
(AIDD), Administration for Community Living, HHS.

ACTION: Final rule.

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SUMMARY: This rule implements the Developmental Disabilities Assistance 
and Bill of Rights Act of 2000. The previous regulations were completed 
in 1997 before the current law was passed. The rule will align the 
regulations and current statute and will provide guidance to AIDD 
grantees.

DATES: These final regulations are effective August 26, 2015.

FOR FURTHER INFORMATION CONTACT: Andrew Morris, Administration on 
Intellectual and Developmental Disabilities, telephone (202) 357-3424 
(Voice). This is not a toll-free number. This document will be made 
available in alternative formats upon request. Written correspondence 
can be sent to Administration on Intellectual and Developmental 
Disabilities, U.S. Department of Health and Human Services, One 
Massachusetts Ave, Washington, DC 20201.

SUPPLEMENTARY INFORMATION:

I. Developmental Disabilities Assistance and Bill of Rights Act of 2000

    In 1963, the President signed into law the Mental Retardation 
Facilities and Construction Act (Pub. L. 88-164). It gave the authority 
to plan activities and construct facilities to provide services to 
persons with ``mental retardation''.\1\ This legislation was 
significantly amended a number of times since 1963 and most recently by 
the Developmental Disabilities Assistance and Bill of Rights Act of 
2000, Public Law 106-402 (the DD Act of 2000).
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    \1\ While developmental disability is the preferred contemporary 
language, mental retardation was the term used in 1963.
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    Key changes in the DD Act of 2000 include:
     The DD Act of 2000 requires State Councils on 
Developmental Disabilities (``Councils'' or ``SCDDs'') to set-aside 70 
percent of the Federal funds for activities tied to Council goals 
(section 124(c)(5)(B)(i)). The previous amount was 65 percent. Also, 
the DD Act of 2000 increases the percentage from 50 percent to 60 
percent of representation by individuals with developmental 
disabilities on Councils (section 125(b)(3)).
     The DD Act of 2000 strengthens provisions regarding access 
to records of individuals with developmental disabilities that service 
providers hold, in order to investigate potential abuse and neglect. 
Also, the State must now provide information to a Protection and 
Advocacy (P&A) agency about the adequacy of health care and other 
services, supports, and assistance that individuals with developmental 
disabilities receive through home and community-based waivers. The DD 
Act of 2000 also defines the P&A governing board. The governing board 
is subject to section 144 of the Act.
     Additionally, under the Act, the University Affiliated 
Programs are renamed University Centers for Excellence in Developmental 
Disabilities Education, Research, and Service (referred to as UCEDDs). 
Each UCEDD receives a core award. When appropriations are sufficient to 
provide at least $500,000, as adjusted for inflation, in funding to 
each existing UCEDD, AIDD, subject to availability of appropriations, 
awards grants for national training initiatives and is authorized to 
create additional UCEDDs or to make additional grants to existing 
UCEDDs. New UCEDDS created under this authority or additional grants to 
existing UCEDDs must be targeted to states or populations that are 
unserved or underserved (section 152(d)).
     The DD Act of 2000 authorizes the Projects of National 
Significance (section 161) to carry out projects relating to the 
development of policies that reinforce and promote the self-
determination, independence, productivity, and inclusion in community 
life of individuals with developmental disabilities.
     Finally, the DD Act of 2000 also established two 
additional program authorities, Title II--Families of Children with 
Disabilities Support Act of 2000, and Title III--Program for Direct 
Support Workers Who Assist Individuals with Developmental Disabilities. 
Titles II and III of the DD Act of 2000 have not had funds appropriated 
by Congress and are not addressed in this rule.

II. Grantees of the Administration on Intellectual and Developmental 
Disabilities (AIDD) Under the Act

A. Federal Assistance to State Councils on Developmental Disabilities

    As stated in section 121 of the DD Act, formula grants are made to 
each State and other eligible jurisdictions to support a State Council 
on Developmental Disabilities (SCDD) to engage in advocacy, capacity 
building, and systemic change activities that assure that individuals 
with developmental disabilities and their families participate in 
service and program design, and have access to needed community 
services. These grants provide assistance that promotes self-
determination, independence, productivity, and integration and 
inclusion in all facets of community living. Activities contribute to a 
coordinated, person and family-centered, person and family-directed, 
comprehensive system that includes needed community services, 
individualized supports, and other forms of assistance that promote 
self-determination for individuals with developmental disabilities and 
their families.
    It is noted that section 143 of the Act requires that a state have 
a functioning P&A system in order for the SCDD to receive funds.

B. Protection and Advocacy for Individuals With Developmental 
Disabilities

    Formula grants are made to each State and other eligible 
jurisdictions to support a P&A system to protect and advocate for the 
rights of individuals with developmental disabilities. The system must 
have the authority to pursue legal, administrative, and other 
appropriate remedies or approaches to ensure the protection, advocacy 
and rights of individuals with developmental disabilities who are or 
who may be eligible for treatment, services, or habilitation, or who 
are being considered for a change in living arrangement. The system 
must provide information and referral for programs and services 
addressing the needs of individuals with developmental disabilities, 
and have the authority to investigate incidents of abuse and neglect of 
individuals with developmental disabilities if the incidents are 
reported to the system, or if there is probable cause to believe that 
the incidents occurred.

C. Projects of National Significance

    Under subtitle E of title I of the Act, AIDD may award grants, 
contracts or cooperative agreements for Projects of National 
Significance (PNS) to create opportunities for individuals with 
developmental disabilities to directly and fully contribute to, and 
participate in, all facets of community life. Generally, projects are 
to support the development of national and state policies that 
reinforce and promote self-

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determination, independence, productivity, integration, and inclusion 
in all facets of community living.

D. National Network of University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDs)

    Grants are awarded to entities designated as University Centers for 
Excellence in Developmental Disabilities Education, Research, and 
Service (UCEDDs) in the States and other eligible jurisdictions to 
provide leadership; advise federal, state, and community policymakers; 
and promote self-determination, independence, productivity, and full 
integration of individuals with developmental disabilities. The UCEDDs 
are interdisciplinary education, research, and public service units of 
universities, or public or not-for-profit entities associated with the 
universities that engage in the core functions of interdisciplinary 
pre-service preparation and continuing education of students and 
fellows, provision of community services, conduct of research, and 
dissemination of information related to activities undertaken to 
address the purpose of title I of the Act.

III. Discussion of Final Rule

    A Notice of Proposed Rule Making (NPRM) to address the requirements 
of the DD Act of 2000 was published on April 10, 2008 (73 FR 19708) and 
a subsequent document published on July 29, 2008 (73 FR 43904) reopened 
the comment period through September 29, 2008. This rule finalizes many 
of the policies that were included in the NPRM, as well as reorganizes 
some provisions based on court rulings and to provide clarity.
    The majority of comments received supported the focus on 
individuals with developmental disabilities living and participating in 
all aspects of community living. The following discusses issues raised 
in the NPRM:
    a. The NPRM substantially reorganized the regulatory text of 45 CFR 
chapter XIII, subchapter I, the Administration on Developmental 
Disabilities, Developmental Disabilities Program in full. To this end 
we have revised citations and made technical changes as necessary. The 
Administration on Developmental Disabilities became the Administration 
on Intellectual and Developmental Disabilities (AIDD) (as published in 
the Federal Register on April 18, 2012 (77 FR 23250).
    b. AIDD has made technical changes to make the rule consistent with 
the statute and related to the delegations of authorities published in 
the Federal Register on March 15, 2013 (78 FR 16511). These technical 
revisions further implement the Secretary's recent reorganization of 
the functions of the U.S. Department of Health and Human Services that 
created the Administration for Community Living (ACL). The new 
terminology ``Secretary, or his or her designee,'' is used to replace 
such terms as ``Assistant Secretary'' (referring to the Assistant 
Secretary of the Administration on Children and Families) and 
``Commissioner'' (referring to the Administration on Disabilities 
Commissioner).
    c. The NPRM requested comment on ``whether the current process 
involving class action lawsuits provides adequate protection for 
individuals with developmental disabilities,'' and specifically, ``on 
the procedures used to reach decisions on whether to pursue class 
action lawsuits and the method of informing/obtaining consent.'' AIDD 
received many comments, both raising concerns about the use of class 
actions by P&As and expressing support for the outcomes P&As have 
accomplished via their legal advocacy generally, and the use of class 
action lawsuits specifically. Many commenters suggested that request 
for such comments deals with issues beyond the scope of AIDD's 
authority. AIDD considered the comments received and has chosen not to 
adopt new rules specifically governing the process for P&A's pursuing 
class action lawsuits.
    Some commenters recommended adding requirements for notification of 
ICF/IID \2\ residents, families and legal guardians/representatives 
where applicable, as well as a specific ``opt out'' provision for this 
population. As explained above, we determined not to adopt new rules 
governing class action lawsuits. Class action lawsuits are governed by 
the Federal Rules of Civil Procedure, which already include notice 
provisions and we do not believe additional rules specific to P&A's 
pursuing class actions are required. The DD Act has as its mission 
protecting people with developmental disabilities from abuse and 
neglect, and class action lawsuits are an essential tool for such 
protection. Additional requirements creating procedural obstacles that 
do not exist for other civil rights enforcement actions may impede 
litigation that protects and enhances the rights of people with 
developmental disabilities. These suggested ``opt out'' and notice 
provisions singular to these types of cases may create additional 
hurdles and undermine the purposes of the DD Act, the Americans with 
Disabilities Act, and the Supreme Court decision in Olmstead.
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    \2\ In keeping with the rule from the Centers for Medicare and 
Medicaid Services, ``Medicare and Medicaid Program; Regulatory 
Provisions to Promote Program Efficiency, Transparency, and Burden 
Reduction CMS-9070-F,'' which took effect on July 12, 2012, this 
rule substitutes the term Intermediate Care Facilities for 
Individuals with Intellectual Disabilities (ICF/IID) for the former 
term Intermediate Care Facilities for Persons with Mental 
Retardation (ICF/MR).
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    In addition, as many commenters noted, P&As utilize the tool of 
class actions lawsuits judiciously. For example see the 2003 report 
from GAO, ``P&A Involvement in Deinstitutionalization Lawsuits on 
Behalf of Individuals with Development Disabilities,'' available at 
https://www.gao.gov/new.items/d031044.pdf.
    The DD Act is clear in prioritizing full integration and inclusion 
of people with developmental disabilities, promoting self-
determination, independence, productivity and integration and inclusion 
in all facets of community life. P&As have a central role in protecting 
the rights of individuals with developmental disabilities. Additional 
provisions beyond what is required in the Federal Rules of Civil 
Procedure could prevent P&As from fulfilling their mandate to enforce 
the rights of individuals with disabilities in the most effective 
manner.
    d. Many of the comments asked AIDD to define what a UCEDD is. The 
previous term ``University Affiliated Program'' was defined in previous 
regulations, but the new term ``UCEDD'' was not defined in the 2008 
NPRM. We reviewed the comments and concurred that a clear definition 
for the UCEDD is necessary. To that end, part 1388 has been reorganized 
from what was in the NPRM, and language for Governance and 
Administration (which defines the structure of a UCEDD) has been 
restored from the previously published regulations to reflect the 
change from University Affiliated Programs to University Centers of 
Excellence in Developmental Disabilities.
    e. The NPRM invited comment on the question of activities to 
``advise,'' ``inform,'' and/or ``educate'' federal, state, and local 
policymakers. The NPRM sought comment on the possible distinction 
between lobbying and the educational activities included in the 
statute. Sections 125(c)(5)(J), 143(a)(2)(L), and 153(a)(1), of the DD 
Act authorize the State Councils, P&As, and UCEDDS to engage in 
education, advising, and support of policymakers. Additionally, section 
102(27)(E) defines the term ``self-determination activities,'' to 
envision self-advocacy, whereby individuals with developmental 
disabilities, themselves, educate

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policymakers and play a role in the development of public policies that 
affect them. Section 161(2)(D)(iii) also states that one of the 
purposes of the Projects of National Significance is to support the 
development of national and State policies that reinforce and promote 
such self-determination and inclusion through projects that provide 
education for policymakers. The majority of commenters stated support 
for educational activities while recognizing the restrictions with 
federal funds.
    AIDD issued guidance (ADD-01-1 dated September 20, 2001) on 
lobbying activities. AIDD grantees should continue to present 
information in a balanced and non-partisan manner that is consistent 
with the principles of the DD Act. Grantees may use non-federal funds 
for other policy related activities in accordance with relevant federal 
and state laws.
    We understand that grantees may have questions regarding the 
practice of advocacy. Many provisions of the DD Act specifically 
require grantees to engage in such activities as advocacy, capacity 
building, and/or systems change activities (sections 101(b)(1); 
104(a)(3)(D)(ii)(I-III); 121(1); 124(c)(4); 124(c)(4)(L); 125(c)(2); 
143(a)(2)(A)(i); 161(2)). AIDD may work with stakeholders to issue new 
or revised guidance on the subject to address these issues.
    Below is a section-by-section discussion of changes made between 
the NPRM and final rule:

Part 1385--Requirements Applicable to the Developmental Disabilities 
Programs

Section 1385.1 General

    Commenters suggested that the term ``Protection and Advocacy of 
Individual Rights'' (PAIR) be changed to ``Protection and Advocacy for 
Individuals with Developmental Disabilities'' (PADD) throughout the 
regulation. Though the term ``Protection and Advocacy of Individual 
Rights'' is used in the DD Act, the name is identical to a similar 
program administered by the Department of Education. For the sake of 
clarity, and as the term ``Protection and Advocacy for Individuals with 
Developmental Disabilities'' (PADD) is already regularly used to refer 
to the P&A program under the DD Act, we have substituted this 
terminology throughout the regulations.

Section 1385.2 Purpose of the Regulation

    No changes were made from the NPRM.

Section 1385.3 Definitions

    This section of the final rule updates definitions from the NPRM. 
The definitions in Sec.  1385.3 are applicable to the rule in its 
entirety. Some definitions have been changed because the NPRM 
definitions went beyond the scope of the law.
Accessibility
    The definition of accessibility has been changed to reflect the 
most current and up to date laws and regulations regarding section 504 
of the Rehabilitation Act of 1973, and the Americans with Disabilities 
Act of 1990, and the Americans with Disabilities Act Amendments Act of 
2008 (Pub. L. 110-325).
AIDD
    This definition was added to reflect the change in organizational 
names from the Administration on Developmental Disabilities to the 
Administration on Intellectual and Developmental Disabilities in the 
process of the creation of the Administration for Community Living.
Advocacy Activities
    AIDD received comments asking for the inclusion of systems change 
in the definition of ``advocacy activities'' and we concurred with 
comments. A minority of comments suggested removing ``families'' from 
the definition. AIDD disagreed with removing families from the 
definition as they play a key role in the lives of people with 
developmental disabilities and are specifically referenced throughout 
the statute, including in the purpose of the law. AIDD concurred with 
requests for a broader definition of advocacy activities, and expanded 
Advocacy Activities to include all aspects of community living. AIDD 
has revised the term ``advocacy activities''.
Assistive Technology Device
    AIDD received comments asking that the definition of ``assistive 
technology device'' be changed to the wording of the statute. AIDD 
concurred with the comments.
Assistive Technology Service
    AIDD received comments asking that the definition of ``assistive 
technology service'' be changed to the wording of the statute. AIDD 
concurred with the comments.
Capacity Building Activities
    AIDD received comments that the definition of ``capacity building 
activities'' did not include key processes and limited activities. 
Also, the NPRM changed the application of capacity building activities 
from the UCEDDs to all DD Act programs.. Based on comments received, 
the definition of capacity building activities has been clarified to 
include elements of community living, and made applicable to all the DD 
Act programs.
Developmental Disability
    AIDD received multiple objections that the insertion of the term 
``determined on a case by case basis'' regarding a developmental 
disability, with some commenting that it constituted an additional 
requirement not included in the statute.. AIDD concurred and removed it 
from the definition. The definition as passed in the 2000 
reauthorization did not include such language requiring that each 
person with a developmental disability be determined on a case by case 
basis. Multiple commenters opined that that phrase excessively puts a 
medical diagnosis on developmental disabilities.
Inclusion
    We received comments asking that the definition of ``inclusion'' be 
changed to the wording of the statute. We concurred with the comments.
State
    We made a technical revision that was an error in the NPRM for the 
definition of ``State''. For the purposes of the UCEDD grants, American 
Samoa and the Commonwealth of the Northern Mariana Islands are not 
considered States. See section 155 of the DD Act, 42 U.S.C. 15065.
Supported Employment Services
    We received comments asking that the definition for ``supported 
employment services'' be changed to the wording of the statute. We 
concurred with the comments.

Section 1385.4 Rights of Individuals With Developmental Disabilities

    No changes were made from the NPRM.

Section 1385.5 Program Accountability and Indicators of Progress

    This section of the NPRM is not being developed into a final rule. 
We generally received unfavorable comments from stakeholders that the 
requirements would place an administrative and cost burden on grantees. 
We concurred, as AIDD does not want to place undue hardships on 
grantees. We have concluded that additional guidance is unnecessary at 
this time. Since the law was passed

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AIDD has issued OMB approved reporting requirements that are consistent 
with the Act. See OMB approved reporting in the Impact Statement of the 
Preamble.

Section 1385.6 Employment of Individuals With Disabilities

    There were no changes made to this section in the final rule from 
the NPRM.

Section 1385.7 Reports of the Secretary

    There were no changes made to this section in the final rule from 
the NPRM.

Section 1385.8 Formula for Determining Allotment

    To reflect the accuracy of the allotment process as defined in the 
statute, the final rule has been amended to replicate sections 122 and 
142 of the Act.

Section 1385.9 Grants Administration

    There were no changes made to this section in the final rule from 
the NPRM.

Part 1386--Formula Grant Programs

Subpart A--Basic Requirements

Section 1386.1 General

    The final rule makes technical changes to Sec.  1386.1 to update 
the terminology.

Section 1386.2 Obligation of Funds

    Similarly, the final rule revises Sec.  1386.2 to update 
terminology.

Subpart B--Protection and Advocacy for Individuals with Developmental 
Disabilities (PADD).

    We have revised the title of subpart B to read: Subpart B--
Protection and Advocacy for Individuals with Developmental Disabilities 
(PADD).

Section 1386.19 Definitions

    A number of comments were received on the definitions proposed in 
the NPRM with respect to subparts B, Sec.  1386.19, requesting that 
modifications be made to the below definitions of ``Abuse,'' 
``Complaint,'' ``Legal Guardian, Conservator and Legal 
Representative,'' ``Neglect,'' ``Probable Cause,'' and ``Service 
Provider.''
Abuse
    AIDD received numerous comments on the definition of ``abuse.'' 
Commenters recommended including the language ``willful infliction of 
injury, unreasonable confinement, intimidation, or punishment with 
resulting physical harm, pain or mental anguish'' in the definition. 
The DD Act authorizes P&As to investigate incidents of abuse and 
neglect, as in section 143(a)(2)(B), to protect individuals with 
developmental disabilities, regardless of the intent of the alleged 
abuser. Determining ``willful infliction'' may also require further 
information to establish such intent, which would, in turn, complicate 
and even potentially eliminate, a P&A's ability to conduct an 
appropriate investigation. After careful consideration, AIDD did not 
include this recommended change in the final rule.
    Some commenters suggested removing the phrase ``repeated and/or 
egregious,'' from the definition of abuse. AIDD removed ``repeated and 
egregious,'' as suggested. This change is consistent with the language 
of the DD Act, which states that one of its purposes is to provide 
individuals with developmental disabilities the opportunity and support 
``to live free of abuse, neglect, financial and sexual exploitation, 
and violations of their legal and human rights'' (section 101(a)(16)(F) 
of the DD Act, 42 U.S.C. 15001(a)(16)(F)). Even a single instance of 
the aforementioned treatment is should be sufficient to constitute the 
type of circumstance that would give a P&A authority to initiate an 
investigation.
    Commenters also recommended substituting ``legal'' for ``statutory 
and constitutional'' in the definition. AIDD made the recommended 
change, as P&A authority must include the ability to investigate 
violations of regulations and judicial precedent; P&A investigatory 
authority is not limited only to violations of statutory or 
constitutional law.
    Finally, some commenters suggested deleting the phrase ``which may 
prevent the individual from providing for his or her basic needs such 
as food and shelter'' from the definition with respect to financial 
exploitation. Financial exploitation is a type of abuse which falls 
within the investigatory authority of P&As, and individuals with 
developmental disabilities can be subject to this type of abuse even 
when the individual is able to take care of basic food and shelter 
needs.
    AIDD adopted the recommendation and removed the phrase ``which may 
prevent the individual from providing for his or her basic needs such 
as food and shelter'' from the final rule.
Complaint
    Commenters suggested that ``complaint'' be defined to include 
``from any source relating to alleged abuse or neglect,'' rather than 
``from any source relating to status or treatment,'' as ``status'' and 
``treatment'' are not defined in the proposed regulations. The language 
``from any source alleging abuse or neglect,'' was adopted into the 
final rule as it is consistent with the prior DD Act regulations, as 
well as with the Protection and Advocacy for Individuals with Mental 
Illness (PAIMI regulations, 42 CFR 51.2).
    Another commenter recommended that the definition include a 
clarification that an individual's residential placement does not, 
alone, constitute a complaint issue. Related, other commenters 
expressed concern that residential status in the context of the 
definition would lead to potentially inappropriate investigations by 
the P&As, and recommended that the definition include specific language 
stating that an individual's residential placement, if not related to 
quality issues, does not constitute a complaint issue. AIDD has 
considered these suggestions and did not adopt the suggested change. 
Residential status may be a part of the determination of whether an 
investigation should be initiated by a P&A under the DD Act. The DD Act 
includes the authority to protect and advocate for the rights of 
individuals ``who . . . are being considered for a change in living 
arrangements'' in section 143(a)(2)(A)(i), and P&As must apply these 
principles in accordance with the intent of the law. An example of such 
principles can be found in section 109(a)(2), ``treatment, services, 
and habitation for an individual with developmental disabilities should 
be designed to maximize the potential of the individual and should be 
provided in the setting that is least restrictive of the individual's 
personal liberty.''
    Commenters also suggested the term ``alleging'' be added to modify 
``abuse or neglect.'' AIDD adopted this change, as the P&A may not yet 
have determined whether abuse or neglect has actually occurred at the 
complaint stage.
    AIDD also included ``electronic communications,'' and other media 
to provide an additional, relevant and technologically up-to-date 
example of a type of communication that a P&A may receive that may fall 
under this definition.
Legal Guardian, Conservator and Legal Representative
    Based on comments received, AIDD has modified the definition of 
``legal guardian, conservator and legal representative,'' to include 
``a parent of a minor, unless the State has appointed another legal 
guardian under applicable State law,'' to be consistent with the 
findings of the district court in State of Connecticut Office of 
Protection and Advocacy for Persons with Disabilities

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v. Hartford Bd. of Ed, 464 F.3d 229 (2d Cir. 2006) (holding that P&A 
has access to names and contact information for parents and/or 
guardians of certain students). Commenters also recommended adding 
``executors and administrators of estates,'' to the list of excluded 
categories, a change AIDD instituted for the sake of clarity. Finally, 
commenters recommended substituting ``services, supports and other 
assistance'' for ``treatment and habilitation services,'' and AIDD made 
that change, to be consistent with the principles of the DD Act and to 
explicitly express that the DD Act covers a broad range of services.
Neglect
    Some commenters recommended the addition of ``failure to take 
appropriate steps to prevent harassment or assault by a peer or self-
abuse'' to the term ``neglect.'' P&As need the authority to investigate 
acts or omissions leading to this type of situation, which can put the 
health, safety and life of an individual with a developmental 
disability at risk. AIDD accepted the proposed change.
    Another commenter recommended alternative modifications, including 
concerns similar to the issue raised regarding the definition of abuse, 
suggesting that ``repeated'' be part of the definition. The DD Act 
seeks to ensure that people with developmental disabilities ``live free 
of . . . neglect'' in section 101(a)(16)(F). AIDD did not accept the 
proposed change, as the DD Act does not require ``repeated'' incidents 
to qualify under this definition.
    One commenter objected to the continued inclusion of the existence 
of a discharge plan in the definition of ``neglect.'' AIDD considered 
this comment, and rejected it. Since at least 1996, the regulations 
have contained language about failing to establish or carry out a 
discharge plan.
Probable Cause
    Commenters suggested adding language to the body of the rule to the 
effect that the definition is not intended to affect the authority of 
the courts to review the determinations of P&As as to whether probable 
cause exists. However, we did not accept this change, as AIDD does not 
have authority over court jurisdiction.
    Commenters also suggested removing the phrase ``depending on the 
context,'' as ambiguous and unnecessary. AIDD agreed and removed the 
phrase accordingly.
    Some commenters suggested that the definition in the NPRM failed to 
provide constitutionally mandated due process and was unclear. The NPRM 
stated that ``the P&A system is the final arbiter of probable cause 
between itself and the organization or individuals from whom it is 
seeking records.'' We agreed that the language is unnecessary and 
deleted it. Where a P&A determines it has reasonable belief that an 
individual with developmental disabilities has been, or may be, subject 
to abuse or neglect, it has a legally enforceable right to access the 
records or individuals sought, in compliance with relevant statutes and 
regulatory provisions.
    A commenter suggested creating an alternative process to address 
circumstances when a service provider wants to withhold access and 
challenges the standard. AIDD believes that would be excessively 
burdensome and did not incorporate the suggestion. Where there is 
controversy between the P&A and service provider, the P&A makes the 
relevant determination, in the interest of providing strong protection 
of and advocacy for people with developmental disabilities in keeping 
with the purpose of the DD Act. In situations regarding abuse and 
neglect, the court remains the ``final arbiter'' with respect to 
determining whether an adequate basis for probable cause exists.
Service Provider
    The NPRM proposed a new definition of ``Service Provider,'' but has 
chosen not to finalize it. This is due to the rapidly changing nature 
of who provides services, and the tremendous variation in the delivery 
of supports in a broad range of settings. To define an exemplary list 
of ``service providers'' in a regulation would not allow for the broad 
range of entities currently providing services to be inclusively 
represented. The DD Act is clear that P&As have access to people with 
developmental disabilities, ``in a location in which services, 
supports, and other assistance are provided . . .'' (section 
143(a)(2)(H)). However the law is not explicit about who might be 
providing such services, intentionally leaving this flexibility to 
evolve with systems. Twenty years ago it was common for an individual 
to live in a large congregate setting. Now an individual is more likely 
to be living in a small group home, in an adult supported living 
(foster) home, with his or her own family or family member, or 
independently in his or her own home.
    AIDD received comments asking for possible types of service 
providers to be listed, but determined that publishing a specific list 
might create a perception that any list is exhaustive or potentially 
over-inclusive.
Service Recipient
    Commenters recommended replacing the term ``service recipient'' 
with ``individual with developmental disabilities,'' where appropriate, 
throughout the regulations. The term ``service recipient'' was not 
defined in the proposed regulation, and it also represents passive 
language not in alignment with the DD Act. To reflect the fact that 
service recipient is not a defined term, the final rule alters 
terminology was altered in Sec. Sec.  1386.26, 1386.27, and 1386.28 and 
in relevant subject headings to refer to ``individuals with 
developmental disabilities''. This change is not intended to affect the 
scope of the P&A's legal authority as outlined in the regulations.

Section 1386.20 Agency Designated as the State Protection and Advocacy 
System

    Similar to the proposed rule, the final rule revises the heading of 
Sec.  1386.20 to Agency Designated as the State Protection and Advocacy 
System from Designated State Protection and Advocacy Agency. Commenters 
recommended that the redesignation process described in paragraph (d) 
include an opportunity for an oral administrative hearing before an 
independent authority. AIDD considered this comment, but declines to 
make that addition to the regulations as the requested change would 
necessitate an undue administrative burden on the agency.
    AIDD made technical changes in Sec.  1386.20(d)(2)(vi) and (d)(3) 
requiring accessible formats and access for individuals with limited 
English proficiency. AIDD removed examples of outdated technology in 
Sec.  1386.20(d)(3).

Section 1386.21 Requirements and Authority of the State Protection and 
Advocacy System

    AIDD revised the title to include a reference to ``State'' in 
relation to the Protection and Advocacy System and updated terminology 
and statutory cites.
    Commenters expressed support for Sec.  1386.21(c) as written in the 
NPRM, which revised the regulation to include additional language 
regarding prohibited State actions which would diminish or interfere 
with the exercise of the required authority of the P&As. No changes 
were made to the language in this section of the final rule.
    In paragraph (g), we are adding a statement indicating governing 
boards are also required to have a majority of individuals with 
disabilities or their family members. This brings the rule in alignment 
with the statute.

[[Page 44801]]

    Regarding Sec.  1386.21(j), commenters recommended the inclusion of 
a new subsection to allow the P&As to enter into contracts for part of 
their programs. AIDD agreed that this option would allow greater 
flexibility for monitoring in remote areas, and for entering into 
special initiatives. P&As have explicit oversight responsibilities to 
ensure the contractor organizations meets all of the standards and 
requirements applicable to the P&As. The language in Sec.  1386.21(j) 
reflects the field's evolving understanding of legal standing in the 
P&A context.

Section 1386.22 Periodic Reports: State Protection and Advocacy System

    The P&A system shall continue to comply with the reporting 
requirements of the law and applicable regulations, in accordance with 
OMB approved reports.

Section 1386.23 Non-allowable costs for the State Protection and 
Advocacy System

    No changes were made in this section.

Section 1386.24 Allowable litigation costs for the State Protection and 
Advocacy System

    No substantive changes from the NPRM were made in this section.

Subpart C--Access to Records, Service Providers and Individuals With 
Developmental Disabilities

    As noted above, the terminology in the title of subpart C of part 
1386--Formula Grant Programs was changed from ``Service Recipients'' to 
``Individuals with Developmental Disabilities,'' to be consistent with 
changes made in response to comments received, emphasizing clearer and 
more active language.

General Context--Subpart C

    As explained in the NPRM, this rule addresses key provisions in 
Subtitle C of the Act (42 U.S.C. 15043)(a)(1); (2)(A), (H), (I), (J); 
and (c)) on Protection and Advocacy for Individuals with Developmental 
Disabilities. These provisions of the DD Act pertain to P&A access to 
service providers, access to individuals with developmental 
disabilities, and access to records. The rule also offers some examples 
of records to which a P&A shall have access. Given the obligation of 
P&As to conduct investigations of incidences of abuse and neglect, as 
well as the statutory authority under section 143(a)(2)(I) to, in 
certain circumstances, contact an individual's guardian, conservator or 
legal representative, AIDD has taken the position that a P&A shall have 
prompt access to contact information of such individuals. AIDD's 
determination also is supported by law by the Second Circuit Court 
decision in the case, State of Conn. Office of Protection and Advocacy 
for Persons with Disabilities v. Hartford Board of Education, 464 F.3d 
229 (2nd Cir. 2006) (holding that the P&A had the right to access a 
learning academy to investigate complaints of abuse and neglect at the 
school and to obtain the directory of students with contact information 
for parents and guardians).
    AIDD notes the importance of accessing records of individuals with 
developmental disabilities in order for the P&A system to investigate 
suspected cases of abuse and neglect. As discussed in the NPRM, many of 
the changes in this subpart reflect the access authority language 
contained in sections 143(a)(2)(I) and (J) of the Act (42 U.S.C. 
15043(a)(2)(I) and (J)). Where we exercise discretion, we do so in the 
belief that the proposed provisions are necessary to meet Congress' 
underlying intent to ensure necessary access to records to promote the 
P&A's authority to investigate abuse and neglect and to ensure the 
protection of rights. This broad interpretation of available records 
and reports also is consistent with the requirements of the PAIMI 
regulations (42 CFR 51.41). Ensuring that interpretations of statutory 
authority are included in regulation also allows P&As to minimize the 
amount of resources spent on determining the standards for access, in 
service of protecting and advocating for the legal and human rights of 
individuals with developmental disabilities.
    The DD Act and this rule are very specific in terms of when consent 
for records is required. In situations in which an individual's health 
and safety are in immediate jeopardy or a death has occurred, no 
consent is required and access to records must be provided no later 
than within 24 hours (42 U.S.C. 15043(a)(2)(J)(ii)).
    AIDD recognizes that P&As are charged with engaging in a range of 
activities that necessitate access to people with developmental 
disabilities. Examples of such activities include but are not limited 
to protecting the legal and human rights of individuals with 
developmental disabilities, monitoring for incidents of abuse or 
neglect, and monitoring health and safety.
    The DD Act requires that a P&A have access at reasonable times to 
any individual with a developmental disability in a location in which 
services, supports, and other assistance are provided to such an 
individual, in order to carry out the purpose of Subtitle C (42 U.S.C. 
15043)(a)(2)(H)). It is important to note that neither the DD Act, nor 
this rule, makes a distinction on the basis of age with regard to 
access of an individual with a developmental disability by the P&A.

Specific Changes/Additions to Subpart C

Section 1386.25 Access to Records

    Regarding Sec.  1386.25(a)(1), commenters recommended replacing the 
term ``client'' with ``individual with a developmental disability.'' 
AIDD considered that comment and rejected it. The term ``client'' 
connotes a specific relationship, which implies certain duties between 
the client and the P&A system. Though P&A access authority is not 
limited to clients, the term ``client,'' is not interchangeable with 
``individual with a developmental disability.'' The term client is also 
used in the Act in section 143(a)(2)(I)(i).
    Regarding Sec.  1386.25(a)(2)(iii), commenters recommended removing 
``about his or her status or treatment,'' as the term ``complaint'' is 
adequately defined in Sec.  1386.19. For clarity, the phrase has been 
removed. Commenters also recommended removal of ``by any other 
individual or has subjected him or herself to self-abuse,'' to modify 
``neglect.'' This language was removed, as it is now included in the 
definition of neglect in Sec.  1386.19.
    In Sec.  1386.25(a)(3), AIDD removed ``by any other individual or 
has subjected him or herself to self-abuse,'' as this language has been 
added to the definition of neglect in Sec.  1386.19.
    Regarding Sec.  1386.25(a)(3)(i), we added a requirement for 
disclosure of the name and address of a representative be given to the 
P&A promptly. In response to comments and to improve clarity, AIDD has 
added ``telephone number(s)'' of the legal guardian, conservator, or 
other legal representative, to be consistent with proposed Sec.  
1386.26, and ``within the timelines set forth in Sec.  1386.25(c),'' to 
be consistent with the express time periods established in that 
section.
    Regarding Sec.  1386.25(a)(3)(iii), commenters suggested replacing 
``act'' with ``provide consent'' and AIDD made this change to clarify 
the intent of the provision, in accordance with judicial interpretation 
and the intent of the law. AIDD finds the DD Act encourages the broad 
applicability of access authority to records when there is a complaint 
or probable cause of abuse and neglect. For example, a P&A may need to 
access records in a situation where the guardian is allegedly abusing 
or neglecting his/her ward. A majority of courts have recognized that 
P&As should be permitted to access records in

[[Page 44802]]

these situations when a guardian has refused to consent to their 
release.\3\ AIDD had included this change in language to reflect an 
interpretation weighted toward the protection of individuals with 
developmental disabilities.
---------------------------------------------------------------------------

    \3\ See, e.g., Pennsylvania Protection & Advocacy, Inc. v. 
Royer-Greaves Sch. for the Blind, 1999 WL 179797, *8 (E.D. Pa., 
March 25, 1999)(permitting P&A to access records even when guardian 
expressly refused to consent to release of records); Disability Law 
Center v. Reil, 130 F. Supp. 2d 294 (D. Ma. 2001)(court ordered 
service provider to release records notwithstanding the guardian`s 
good faith refusal to do so). But see, Disability Law Center v. 
Millcreek Health Center, 339 F.Supp.2d 1280 (D. Utah 2004), vacated, 
428 F.3d 992 (10th Cir. 2005) (court denied P&A`s access to records 
because an actively involved guardian refused to give consent).
---------------------------------------------------------------------------

    For the final rule, AIDD also added Sec.  1386.25(a)(4) and (5) to 
include language from commenters, regarding P&A access authority to 
records without consent in cases where an individual with developmental 
disabilities has died, or if the P&A has probable cause to believe that 
the health or safety of an individual with developmental disabilities 
is in serious and immediate jeopardy, consistent with the DD Act, 42 
U.S.C. 15043(a)(2)(J)(ii)(I) and (II).
    Regarding Sec.  1386.25(b)(1), commenters suggested adding language 
to include records that were not prepared by the service provider, but 
received by the service provider from other service providers. AIDD 
amended the section accordingly, per the authority of the DD Act, that 
a P&A be able to access ``all records'' of an individual with a 
developmental disability, 42 U.S.C. 15043(a)(2)(I), to the extent 
allowed by law. Such records may include information that is relevant 
to the P&A's work, and shall be accessible to P&A's.
    A commenter recommended deleting Sec.  1386.25(b)(1), describing 
this section as providing ``inappropriate access to records'' because 
it would give P&As too broad of access to records and be duplicative of 
existing requirements for providers with oversight by the Centers for 
Medicare and Medicaid Services. Congress intended to ensure access to 
records consistent with the P&A's authority to investigate abuse or 
neglect and ensure the protection of rights. AIDD did not accept the 
suggested change.
    Regarding Sec.  1386.25(b)(2), commenters suggested removing: ``The 
reports subject to this requirement include, but are not limited to, 
those prepared or maintained by agencies with responsibility for 
overseeing human services systems.'' AIDD eliminated the sentence, as 
``human services system'' is undefined, potentially unclear, and this 
phrase may serve to unduly limit the types of reports P&As can receive.
    Commenters also recommended numerous additions to this section 
regarding the organizations whose reports are subject to this 
requirement. AIDD included various additional examples that may be 
helpful for clarifying the types of facilities and organizations 
providing services, supports and other assistance to individuals with 
developmental disabilities from which P&As have access to records. 
These additions are clarifying examples and are not intended to limit 
the types of organizations whose reports are subject to this 
requirement.
    With respect to the reports subject to this requirement, commenters 
recommended adding ``or by medical care evaluation or peer review 
committees, regardless of whether they are protected by federal or 
state law'' to Sec.  1386.25(b)(2). AIDD has adopted the recommended 
change because this addition facilitates the P&As fulfilling their 
responsibilities under the DD Act, maximizes the most efficient use of 
resources, and is consistent with court decisions allowing P&As access 
to all records of an individual.\4\ Peer review records shall be 
handled in accordance with the confidentiality requirements as 
described in Sec.  1386.28 of this rule.
---------------------------------------------------------------------------

    \4\ See, e.g. Pennsylvania Protection and Advocacy, Inc. v. 
Houstoun, 228 F.3d 423, 428 (3rd Cir. 2000); Center for Legal 
Advocacy v. Hammons, 323 F.3d 1262, 1270 (10th Cir. 2003); 
Protection & Advocacy for Persons with Disabilities v. Mental Health 
& Addiction Services, 448 F.3d 119 (2d Cir. 2006); Missouri Prot. & 
Advocacy Servs. v. Missouri Dep't of Mental Health, 447 F.3d 1021, 
1023-1024 (8th Cir. 2006); Protection & Advocacy for Persons with 
Disabilities, Conn. v. Mental Health & Addiction Servs., 448 F.3d 
119, 128 (2d Cir. 2006); Indiana Prot. & Advocacy Servs. v. Indiana 
Family & Social Servs. Admin., 603 F.3d 365, 382-383 (7th Cir. 2010) 
(en banc), petition for cert. pending, No. 10-131(filed July 21, 
2010); Disability Law Center of Alaska v. North Star Behavioral 
Health, 3:07-cv-00062 JWS, 2008 WL 853639 (D. Alaska, March 27, 
2008).
---------------------------------------------------------------------------

    Regarding Sec.  1386.25(b)(4), commenters recommended adding 
``information in professional, performance building, or other safety 
standards, demographic and statistical information relating to a 
service provider.'' AIDD restored the language that the NPRM deleted, 
as found in Sec.  1386.22(c)(2) of the 1997 regulations. This is 
consistent with the DD Act provision, 42 U.S.C. 15043(a)(2)(I), that a 
P&A be able to access ``all records'' of an individual with a 
developmental disability, 42 U.S.C 15043(a)(2)(J), and we have 
substituted ``service provider'' for ``facility,'' as discussed 
previously.
    Commenters suggested reformulation of the NPRM Sec.  1386.25(c) 
regarding time periods. AIDD added additional Sec.  1386.25(a)(4) and 
(5), regarding access to records without consent when a P&A determines 
there is probable cause to believe the health and safety of an 
individual is in serious or immediate jeopardy, and in the case of 
death of an individual with a developmental disability. With the 
additions of Sec.  1386.25(a)(4) and (5), AIDD has removed the NPRM 
language defining access to records in the case of death. AIDD has 
retained Sec.  1386.25(c)(1) from the NPRM, to address circumstances 
where access to records must be provided within 24 hours of receipt of 
a written request from P&As. AIDD has also retained Sec.  
1386.25(c)(2), specifying access within three business days from 
receipt of written request in all other cases. AIDD considered 
recommended revisions, and determined that the current formulation best 
captures the specifics of section 143(a)(2)(J)(i) and (ii) of the DD 
Act.
    Section 1386.25(d) addresses the remaining provisions regarding 
sharing and copying of records, consistent with the corresponding PAIMI 
regulation, (42 CFR 51.41) which states that the P&A system may not be 
charged for copies more than is ``reasonable'' according to prevailing 
local rates, certainly not a rate higher than that charged by any other 
service provider, and that nothing shall prevent a system from 
negotiating a lower fee or no fee. Regarding Sec.  1386.25(d), 
commenters recommended adding a specific monetary cap to the amount 
charged by a service provider or its agents to copy records for the P&A 
system. AIDD added a provision linking the amount charged in these 
circumstances to the amount customarily charged other non-profit or 
State government agencies for reproducing documents, to avoid 
prohibitive charges as a barrier to accessing appropriate records. AIDD 
recognizes that many records are now being transitioned and maintained 
electronically. To that end, when records are kept or maintained 
electronically they shall be provided electronically to the P&A.
    Regarding Sec.  1386.25(e), commenters recommended adding a 
provision making explicit that the Health Insurance Portability and 
Accountability Act (HIPAA) permits the disclosure of protected health 
information (PHI) without the authorization of the individual to a P&A 
system to the extent that such disclosure is required by law and the 
disclosure complies with the requirements of that law. This provision 
accords with the

[[Page 44803]]

HIPAA Privacy Rule,\5\ and AIDD has included it in this rule. Readers 
may refer to sections 143(a)(2), (A)(i), (B), (I) and (J) of the DD Act 
for provisions governing disclosure required by law. We consider a 
disclosure to be required by law under the DD Act where the access is 
required under 45 CFR 1386.25 and the disclosure is in accordance with 
such regulation.
---------------------------------------------------------------------------

    \5\ See Dep't of Health and Human Services, Health Information 
Privacy, Frequently Asked Questions, at https://www.hhs.gov/ocr/privacy/hipaa/faq/disclosures_required_by_law/909.html (last visited 
March 1, 2012) (``May a covered entity disclose protected health 
information to a Protection and Advocacy system where the disclosure 
is required by law? Answer: Yes.'').
---------------------------------------------------------------------------

    Regarding Sec.  1386.25(f), commenters recommended the addition of 
a provision specifying the authority of P&As to access records of 
schools, educational agencies, etc. An amicus brief submitted by the 
Department of Justice (DOJ), on behalf of the Department of Education 
and the Department of Health and Human Services, took the position that 
a school must provide a P&A with the name and contact information for 
the parent or guardian of a student for whom the P&A has the requisite 
degree of probable cause to obtain records under the DD Act (State of 
Connecticut Office of Protection and Advocacy for Persons with 
Disabilities v. Hartford Bd. of Ed, 464 F.3d 229 (2nd Cir. 2006)). DOJ 
also asserted that a P&A may interview a minor student suspected of 
being subject to abuse or neglect without prior consent from a parent 
or guardian. In addition, ``[i]f the P&A has probable cause `to believe 
that the health and safety of the individual is in serious and 
immediate jeopardy,' it shall have access to records immediately 
without notice to or consent from a parent or guardian.'' The Second 
Circuit adopted DOJ's position on both of these issues.
    DOJ also asserted the government's position that the Court should 
``construe the DD Act [and PAIMI Act] as an override of the Family 
Educational Rights and Privacy Act (FERPA) non-disclosure requirements, 
in the narrow context where those statutes require that a P&A have 
authority to obtain student records held by an institution servicing 
disabled and/or mentally ill students.'' However, after the government 
submitted its brief, Appellants abandoned their FERPA arguments. 
Consequently, the Court did not issue an opinion with respect to the 
interplay of FERPA and the PAIMI and DD Acts.
    Additionally, in 2009 the Ninth Circuit Court ruled in Disability 
Law Center of Alaska, Inc. v. Anchorage School District that P&As have 
an override of FERPA to have access to contact information for parents, 
guardians, or representatives of student. 581 F. 3d 936 (9th Cir. 
2009).
    It remains AIDD's position that the role of P&As as established in 
the DD Act provides for an override of FERPA to permit a P&A to access 
names and contact information for the parents or guardians of students 
with developmental disabilities, where the P&A's determination of 
probable cause satisfies the substantive standards for record access.

Section 1386.26 Denial or Delay of Access to Records

    P&As must be able to obtain the identities of individuals with 
developmental disabilities from service providers (who have control of 
this information). In emergency situations or in the case of the death 
of an individual with developmental disabilities receiving services, 
section 143(a)(2)(J)(ii) of the DD Act requires that P&As have access 
to records of individuals with developmental disabilities receiving 
services within 24 hours after written request is made and without 
consent. AIDD believes that establishing a deadline for providing the 
written justification denying access is necessary in recognition of the 
consequences of not accessing relevant information quickly. This is 
particularly necessary when there are allegations of abuse or neglect, 
probable cause to believe that the health or safety of the individual 
is in serious and immediate jeopardy, or in the case of a death.
    Some commenters expressed the need for a specific penalty in cases 
of denial or delay if a service provider fails to provide a written 
statement giving reason for denial of access to records. AIDD 
considered the comment, but is not attempting to impose penalties via 
these regulations, as AIDD does not have the authority to do so.
    Commenters also recommended the inclusion of [individuals with] 
``intellectual disabilities.'' That term is not included in the DD Act 
nor defined with respect to the scope of individuals included in that 
category for the purposes of these regulations; we have not included it 
in this section.
    AIDD modified the section to clarify that Sec.  1386.26 is 
applicable specifically to access to records, to effectuate the 
purposes of Sec. 143(a)(2)(J)(ii) of the DD Act and to address comments 
submitted regarding possible confusion of timing implications of these 
denial or delay of access provisions, and the provisions for access in 
Sec.  1386.27.

Section 1386.27 Access to Service Providers and Individuals With 
Developmental Disabilities

    AIDD again notes the change from the term ``service recipients'' to 
``individuals with developmental disabilities'' in the heading and 
throughout the section, with the same justification as in Sec.  
1386.22. Under this section, the term ``service provider'' is 
substituted throughout for the term ``facility.'' The term ``programs'' 
is undefined in the regulations, and the final language more precisely 
expresses the parties and items with respect to whom the P&As seek 
access, with more active language than ``recipients.''
    Section 143(a)(2)(H) of the DD Act (42 U.S.C. 15043) requires that 
P&As ``have access at reasonable times to any individual with a 
developmental disability in a location in which services, supports, and 
other assistance are provided to an individual.'' P&A systems must not 
be required to provide advance notice to a service provider when 
investigating an allegation of abuse or neglect, when they have 
probable cause to believe that the health or safety of the individual 
is in serious and immediate jeopardy, or in the case of a death. To 
serve the monitoring function described in section 143(a)(2)(I) of the 
Act, P&As must also have the ability to make unannounced visits to 
check for compliance regarding the health and safety of individuals 
with developmental disabilities. Immediate access may also be 
necessary, for example, to prevent interested parties from concealing 
situations involving abuse or neglect or taking actions that may 
compromise evidence related to such incidents (such as intimidating 
staff or individuals with developmental disabilities who are receiving 
services). Thus, AIDD added the following provision, in keeping with 
the recommendation from commenters: ``Service providers shall provide 
such access without advance notice from the P&A.''
    Some commenters recommended creating separate sections for access 
to ``locations'' and access to ``individuals with developmental 
disabilities and other individuals.'' To minimize confusion, AIDD 
maintained the original structure from the proposed regulations, with 
modifications and reordering where needed for clarity.
    Regarding Sec.  1386.27(c) in the NPRM, commenters suggested adding 
the following language to the section on consent to attend treatment 
planning meetings, ``except that no consent is required if (1) the 
individual, due to his or her mental or physical condition, is

[[Page 44804]]

unable to authorize the system to have access to a treatment planning 
meeting, and (2) the individual does not have a legal guardian, 
conservator or other legal representative, or the individual's guardian 
is the State (or one of its political subdivisions).'' The proposed 
language addresses potential conflicts of interest regarding consent to 
P&A access to attend a treatment planning meeting. AIDD adopted this 
change and included parallel language to the similar provisions 
regarding state guardians in records access provisions Sec.  
1386.25(a)(2)(i).
    AIDD received a comment asking that a physician note be required if 
the service provider denies the P&A access to an individual. We 
concurred with the comment and added language setting forth the 
specific process to be followed in situations where access is denied 
based on the justification that it would interfere with an individual's 
treatment, this was done to minimize confusion and to underscore 
section 143(a)(2)(H) of the Act. Section 143(a)(2)(H) gives P&As access 
at reasonable times to any individual with a developmental disability 
in a location in which services, supports and other assistances are 
provided in order to carry out the purposes of P&As under the DD Act. 
AIDD included these changes to clarify that access be permitted to 
treatment planning meetings (with the consent of the individual or his 
or her guardian), as such access is needed to assure that service 
providers are protecting the health and safety of individuals with 
developmental disabilities receiving services.
    AIDD also explained in the proposed rule that the regulations are 
supported by the legislative history of the PAIMI Act, which provides 
that P&As must be afforded ``access to meetings within the facility 
regarding investigations of abuse and neglect and to discharge planning 
sessions.'' S. Rep. 454, 100th Cong., 2d Sess. (1988). To assure 
consistency with the PAIMI program, P&As are authorized to attend 
treatment team meetings, which serve some of the same purposes as 
discharge planning sessions. The DD Act supports broad access to 
individuals to monitor conditions relating to safety and health.
    With respect to Sec.  1386.27(c)(3) in the NPRM, commenters 
suggested a number of modifications. In response to such comments, AIDD 
has specified that access is ``including but not limited to'' 
inspecting, viewing, and photographing all areas of a service 
provider's premises. We have also added the phrase ``or under the 
service provider's supervision or control,'' to more clearly specify 
the areas covered under this section. Commenters suggested including 
``video recording'' to the list of access activities: inspecting, 
viewing, and photographing. AIDD adopted this change as a helpful 
clarification. AIDD also included the following carve out, to safeguard 
the privacy and preferences of individuals with developmental 
disabilities, in keeping with the values of choice and self-
determination in the DD Act: ``but shall not include photographing or 
video recording individuals with developmental disabilities unless they 
consent or state laws allow such activities.''
    Commenters suggested replacing the NPRM language, ``at reasonable 
times'' in the introductory portion of Sec.  1386.27(c) with ``at all 
times.'' AIDD did not make the change, as the DD Act provision 
regarding access to an individual with a developmental disability 
states a P&A shall have access at ``reasonable times'' 42 U.S.C. 
15043(a)(2)(H).
    With respect to Sec.  1386.27(d) in the NPRM, commenters 
recommended adding provisions on the specifics of the ability of P&As 
to access individuals with developmental disabilities. AIDD added 
language with specifics on the P&A's access authority for these 
individuals. This includes protection of P&As against compulsion to 
disclose the identity of such individuals to the service provider, 
except as required by law. The P&As were established under the DD Act 
to protect and advocate for the legal and human rights of people with 
developmental disabilities. That purpose would be defeated if 
individuals with developmental disabilities or their guardians, 
conservators, or other legal representatives become subject to 
retribution for reaching out to a P&A seeking information about a P&A 
and their services, or to report a suspected incident of abuse or 
neglect.
    A few commenters recommended that Sec.  1386.27 should clarify that 
P&A access to service providers and ``recipients'' must be based on 
substantial allegations of wrongdoing and should only involve 
individuals with developmental disabilities that are the subject of 
wrongdoing. AIDD carefully considered these comments and determined 
that the DD Act expresses a broader intent, that includes, e.g., the 
authority to ``have access . . . to any individual with a developmental 
disability in a location in which services, supports, and other 
assistance are provided to such an individual,'' section 143(a)(2)(H). 
This includes a P&A role of monitoring, as well as, ``providing 
information . . . and referral,'' as stated in section 143(a)(2)(A)(ii) 
which allows for access in circumstances beyond where there is a pre-
existing substantial allegation of wrongdoing.
    Commenters suggested adding a section on access to Individuals with 
Developmental Disabilities and Locations for the purpose of providing 
information, training, and referral for programs. The recommended 
language includes the following: ``P&As shall have access to 
individuals with disabilities and the locations in which they are 
receiving services, supports and other assistance for the purpose of 
providing information, training, and referral for programs addressing 
the needs of individuals with developmental disabilities, and 
information and training about individual rights, and the protection 
and advocacy services available from the P&A system, including the 
name, address, and telephone number of the P&A system. Service 
providers shall post, in an area which is used by individuals with 
developmental disabilities, a poster which states the protection and 
advocacy services available from the P&A system, including the name, 
address, and telephone number of the P&A system.'' AIDD agrees that for 
P&As to accomplish the goal of protecting the legal and human rights of 
individuals with developmental disabilities, the people who need these 
services should be aware that such services are available, as well as 
how to access this resource. AIDD has included a clarification that 
P&As may have access for purposes of providing such information at 
Sec.  1327(c)(2)(i).
    Finally, Sec.  1386.27 has been reorganized and renumbered to 
clarify the access requirements and authorities when P&As investigate 
incidents of abuse and neglect of individuals with developmental 
disabilities, as well as in implementing their additional 
responsibilities under the DD Act. This addresses conflicting comments 
suggesting that the access authority as identified in this section is 
both overbroad and too limited. AIDD carefully considered the input, 
and revised the section to reflect the agency's understanding of P&A 
access authority to protect the legal and human rights of individuals 
with developmental disabilities under the DD Act.

Section 1386.28 Confidentiality of Protection and Advocacy System 
Records

    Similar to the approach used in the PAIMI regulation at 42 CFR 
51.45, AIDD, in the NPRM, incorporated a new section at Sec.  1386.28, 
Confidentiality of

[[Page 44805]]

Protection and Advocacy Systems Records. This section will replace the 
current AIDD regulation in 45 CFR 1386.22(e), Access to Records, 
Facilities and Individuals that deals with P&A access authority.
    Some commenters recommended an essential rewriting of Sec.  
1386.28, stating that some provisions of these regulations could be 
interpreted to ``thwart the fundamental P&A mandate of protecting 
individuals with [developmental] disabilities from abuse or neglect 
while maintaining appropriate confidentiality.'' However, the 
commenters were not specific with problems that an essential rewrite 
would resolve. AIDD did not accept wholesale language commenters 
proposed; however AIDD did make the following changes below.
    Commenters recommended new language with respect to confidentiality 
provisions. AIDD included the following Sec.  1386.28(a), as it 
explicitly articulates existing applicable duties: ``A P&A shall, at 
minimum, comply with the confidentiality provisions of all applicable 
Federal and State laws.''
    Commenters also requested additions clarifying circumstances where 
information can be disclosed, citing shortcomings in the NPRM, but 
without offering specific examples of the problems raised by the 
proposed language. AIDD has maintained the language from the NPRM 
(renumbered where necessary), for the sake of consistency with the 
PAIMI confidentiality provisions, at 42 CFR 51.45, to ensure strong 
confidentiality protections and certainty of integrity are maintained.
    In addition, one commenter suggested that the regulations must make 
clear that the DD Act funding shall not be used to advocate against and 
in any way undermine, downsize or close a Medicaid certified and 
licensed facility [ICF/IDD]. The purpose of the Act clearly 
articulated, in 42 U.S.C. 15001(b), ``to assure that individuals with 
developmental disabilities and their families participate in the design 
of and have access to needed community services, individualized 
supports, and other forms of assistance that promote self-
determination, independence, productivity, and integration and 
inclusion in all facets of community life, through culturally competent 
programs authorized under this title . . .'' applies broadly. The law 
makes no provision to carve out a category of care facilities to which 
the provisions of the Act do not apply, and AIDD does not do so here.
    A commenter also stated that ``the regulations must clearly state 
that a P&A is not permitted to access private homes, unless accompanied 
by the existing state authorities which evaluate accusations of abuse 
and neglect of children and vulnerable adults.'' AIDD considered this 
comment, but notes that other government oversight entities may not be 
able to investigate instances of abuse/neglect in a timely fashion as a 
result of limited resources. For example, Congress created the P&A 
system, to, among other responsibilities, investigate abuse and neglect 
and to take appropriate steps to protect and advocate for individuals 
with developmental disabilities, 42 U.S.C. 15043(a)(2)(A), (B) and (G). 
Congress has also explicitly recognized that P&As may learn of abuse 
and neglect by monitoring service providers, 42 U.S.C. 
15043(a)(2)(L)(ii)(III). Again, the DD Act does not carve out 
exceptions for a category of care facilities or service providers, even 
in cases where services may be provided in a private home. P&As must 
not be constrained in carrying out their statutory mandate to protect 
individuals with developmental disabilities from abuse or neglect, and 
must not have their investigation and monitoring efforts hampered based 
on the responsiveness and timeliness of other government agencies or 
authorities.
    With respect to Sec.  1386.28(b)(2), AIDD added the term 
``disposal'' to the list of required written policies regarding 
information from client records to help ensure the protection of 
confidentiality and help ensure the prevention of inappropriate or 
unintentional disclosure of such information. The addition of 
``disposal'' conforms to prudent modern data management practices.

Subpart D--Federal Assistance to State Councils on Developmental 
Disabilities

    The final rule redesignates subpart C as subpart D and revises the 
material to update statutory and U.S. Code citations to conform to the 
Developmental Disabilities Act of 2000 and update the wording of the 
State Councils on Developmental Disabilities.

Section 1386.30 State Plan Requirements

    The NPRM placed a five year time limit on demonstration projects to 
coincide with the State Plan submission and approval process, as well 
as to ensure consistency with the Act (42 U.S.C. 125(c)(5)(K)(i) and 
(ii)). A number of commenters relayed concerns that a five year time 
limit on demonstration projects would have unintended consequences. For 
example, Web sites, employment activities, self-advocacy activities and 
programs such as Partners in Policymaking could be impacted. Therefore, 
AIDD has modified paragraphs (e) and (f) so that States desiring to 
receive assistance beyond five years, under this subtitle, shall 
include, in the State plan, the estimated period for the project's 
continued duration, justification of why the project cannot be funded 
by the State, other public or private sources of funding, justification 
as to why a project receive continued funding, and intention to provide 
data outcomes showing evidence of success. Councils must also develop 
and include strategies to locate on-going funding from other sources 
after five years. AIDD clarified in paragraphs (e) that it reserves the 
right as the overseeing agency to deny the continuation of 
demonstration projects past five years.
    Although no adverse comments were received on paragraph (f), AIDD 
has amended this section to make it consistent with section 124(a)(5) 
of the Act (42 U.S.C. 15024).

Section 1386.31 State Plan Submittal and Approval

    Although we received no adverse comments on paragraph (a), we are 
making technical changes to the proposed regulation to provide examples 
of formats accessible to individuals with developmental disabilities 
and the general public to reflect current technology.
    AIDD chose not to finalize the requirement in Sec.  1386.31(b) 
that, ``the State plan or amendment must be approved by the entity or 
individual authorized to do so under State law.'' We did not finalize 
this because it is not a requirement under the Act and could 
potentially create conflict with the law in section 124(c)(5)(L) that 
requires a State not interfere with the State plan development or 
implementation.

Section 1386.33 Protection of Employee Interests

    Commenters requested clarification that the State would be 
responsible for the protection of employees who are displaced by 
institutional closures rather than the operator of the institution. 
AIDD has not made any changes to this section as the NPRM clearly 
states that specific arrangements for the protection of affected 
employees must be developed through negotiations between the State 
authorities and employees or their representatives.

[[Page 44806]]

Section 1386.34 Designated State Agency

    No comments were received however technical changes we made to 
reflect the move of AIDD to ACL.

Section 1386.35 Allowable and Non-Allowable Costs for Federal 
Assistance to State Councils on Developmental Disabilities

    Some respondents requested that Sec.  1386.35 be revised to allow 
for State Councils on Developmental Disabilities' rapid response to the 
emergency needs of impacted citizens such as those affected by a 
national disaster or time of war. While we appreciate the comments 
received, AIDD does not find it necessary to make changes to this 
section. Under the existing law, the State Councils on Developmental 
Disabilities can use their funding to work with emergency responders to 
assist them with planning for the support needs of individuals with 
developmental disabilities in the event of a national disaster or time 
of war.

Section 1386.36 Final Disapproval of the State Plan or Plan Amendments

    No comments were received however AIDD has made technical changes 
to reflect the move of AIDD to ACL.

Sections 1386.80 through 1386.112 Subpart E--Practice and Procedure for 
Hearings Pertaining to State's Conformity and Compliance With 
Developmental Disabilities State Plans, Reports and Federal 
Requirements, Formerly Subpart D

    No comments were received; however, AIDD has made technical changes 
to reflect the move of AIDD to ACL and related delegations.

Part 1387--Projects of National Significance

Section 1387.1 General Requirements

    No comments were received on this section of the NPRM. However, 
AIDD made an administrative change and removed Sec.  1387.1(b) as PNS 
program announcements are not required by the Act to be published in 
the Federal Register.

Part 1388--National Network of University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDS)

    Significant changes were made to part 1388 from the NPRM based on 
comments received. Section 153(a)(1) of the Act directed the Secretary 
to define the term ``UCEDD''. The NPRM removed language from previous 
regulations that defined the term University Affiliated Program, which 
was the previous name of the program.
    Many of the comments asked AIDD to define what a UCEDD is. The 
previous term ``University Affiliated Program'' was defined in previous 
regulations, but the new term ``UCEDD'' was not defined in the 2008 
NPRM. We reviewed the comments and concurred that a clear definition 
for the UCEDD is necessary. To that end, part 1388 has been 
reorganized, and language for Governance and Administration has been 
restored from the previously published regulations.

Section 1388.1 Definitions

    As a technical correction AIDD added the definition of ``State'' to 
part 1388 so that it matches the statute. Under Subtitle D, section 
155, the statutory definition of ``State'' that applies to UCEDDs 
differs from the definition of ``State'' in the rest of the Act.

Section 1388.2 Purpose

    In paragraph (a)(2), the wording ``(as defined by the Secretary)'' 
was removed because AIDD has defined a UCEDD, in Sec.  1388.6, in 
response to comments received.

Section 1388.3 Core Functions

    This section was renumbered from Sec.  1388.2 to Sec.  1388.3. No 
other changes were made.

Section 1388.4 National Training Initiatives on Critical and Emerging 
Needs

    This section was renumbered from Sec.  1388.3 to Sec.  1388.4. No 
other changes were made.

Section 1388.5 Applications

    This section was renumbered from Sec.  1388.4 to Sec.  1388.5. 
Additional technical changes were made.

Section 1388.6 Governance and Administration

    In the NPRM, this language had been deleted. Many commenters 
disagreed with the deletion, expressing concern that the elimination of 
this language would undermine the effectiveness of the UCEDD programs 
and allow for diversion of funds for inappropriate purposes.
    AIDD concurred with the commenters and has restored the original 
regulatory language prescribing the governance and administration of 
UCEDDs.

Section 1388.7 Five-Year Plan and Annual Report

    This section was renumbered from Sec.  1388.5 to Sec.  1388.7.
    Amended regulations: 45 CFR parts 1385, 1386, 1387, and 1388.
    In 2008, a Notice of Proposed Rulemaking was promulgated by the 
Administration on Intellectual and Developmental Disabilities. This 
final rule presents 45 CFR parts 1385, 1386, 1387, and 1388 as amended 
in their entirety.

IV. Impact Analysis

A. Executive Order 12866

    Executive Order 12866 requires that regulations be drafted to 
ensure that they are consistent with the priorities and principles set 
forth in Executive Order 12866. The Department has determined that this 
rule is consistent with these priorities and principles. Executive 
Order 12866 encourages agencies, as appropriate, to provide the public 
with meaningful participation in the regulatory process. The rule 
implements the Developmental Disabilities Act of 2000. In developing 
the final rule, we considered input we received from the public 
including stakeholders.

B. Regulatory Flexibility Analysis

    The Secretary certifies under 5 U.S.C. 605(b), the Regulatory 
Flexibility Act (Pub. L. 96-354), that this regulation will not have a 
significant economic impact on a substantial number of small entities. 
The primary impact of this regulation is on State Councils on 
Developmental Disabilities (SCDDs), State Protection and Advocacy 
Systems (P&As), and University Centers of Excellence in Developmental 
Disabilities (UCEDDs). This final rule will support the work of the 
P&As in investigating potential abuse and neglect by providing guidance 
regarding access to service providers and records of individuals. 
Service providers will be impacted if a complaint is made against them. 
Similarly, this regulation will support the work of UCEDDs by providing 
guidance on the administration and operation standards of the programs. 
The regulation does not have a significant economic impact on these 
entities. AIDD estimates an impact of less than $100,000 across the DD 
entities.

C. Paperwork Reduction Act of 1995

    Sections 1386.22, 1386.32, and 1388.5 contain information 
collection requirements. In part 1386 of the NPRM, the State Council on 
Developmental Disabilities Program Performance Report and the 
Protection and Advocacy Statement of Goals and Priorities required 
renewal from OMB.

[[Page 44807]]



                Reporting and Recordkeeping Requirements in Part 1386 and 1388 of the Final Rule
----------------------------------------------------------------------------------------------------------------
                                                          Annual # of                              Annual burden
                                            Expires       respondents     Ave. burden response         hours
----------------------------------------------------------------------------------------------------------------
1386.23(a) SF-PPR 0980-0027...........      08/31/2017              57  44 hours................           2,508
1386.23(c) P&A SGP Reinstatement 0980-      11/30/2015              57  44 hours................           2,508
 0270.
1386.30(c) Council State Plan 0980-         11/30/2017              56  367 hours...............          20,552
 0029.
1386.32(b) Council PPR Reinstatement        08/31/2015              56  138 hours...............           7,728
 0980-0172.
1386 32(a) Council Financial Status
 Report (AIDD-02B).
AIDD-02 Council 0985-0026.............      11/30/2015              56  8 hours.................             842
1388.5(b) UCEDD Annual Report 0970-         09/30/2016              67  1,412 hours.............          94,604
 0289.
----------------------------------------------------------------------------------------------------------------

D. Unfunded Mandates Reform Act

    Section 202 of the Unfunded Mandates Reform Act of 1995 (Unfunded 
Mandates Act) requires that a covered agency prepare a budgetary impact 
statement before promulgating a rule that includes any Federal mandate 
that may result in expenditures by State, local, or Tribal governments, 
in the aggregate, or by the private sector, of $100 million, adjusted 
for inflation, or more in any one year.
    If a covered agency must prepare a budgetary impact statement, 
section 205 further requires that it select the most cost-effective and 
least burdensome alternatives that achieves the objectives of the rule 
and is consistent with the statutory requirements. In addition, section 
203 requires a plan for informing and advising any small government 
that may be significantly or uniquely impacted by a rule.
    AIDD has determined that this rule does not result in the 
expenditure by State, local, and Tribal government in the aggregate, or 
by the private sector of more than $100 million in any one year.

E. Congressional Review

    This rule is not a major rule as defined in 5 U.S.C. 804(2).

F. Assessment of Federal Regulations and Policies on Families

    Section 654 of the Treasury and General Government Appropriations 
Act of 1999 requires Federal agencies to determine whether a policy or 
regulation may affect family well-being. If the agency's conclusion is 
affirmative, then the agency must prepare an impact assessment 
addressing seven criteria specified in the law. These regulations do 
not have an impact on family well-being as defined in the legislation.

G. Executive Order 13132

    Executive Order 13132 on ``federalism'' was signed August 4, 1999. 
The purposes of the Order are: ``. . . to guarantee the division of 
governmental responsibilities between the national government and the 
States that was intended by the Framers of the Constitution, to ensure 
that the principles of federalism established by the Framers guide the 
executive departments and agencies in the formulation and 
implementation of policies, and to further the policies of the Unfunded 
Mandates Reform Act. . .''
    The Department certifies that this rule does not have a substantial 
direct effect on States, on the relationship between the Federal 
government and the States, or on the distribution of power and 
responsibilities among the various levels of government.
    AIDD is not aware of any specific State laws that would be 
preempted by the adoption of the regulation in subpart C of 45 CFR part 
1386.
    This rule does contain regulatory policies with federalism 
implications that require specific consultation with State or local 
elected officials. However, prior to the development of the rule, the 
Administration on Intellectual and Developmental Disabilities consulted 
with SCDDs, P&As, and UCEDDs to minimize any substantial direct effect 
on them and indirectly on States.

List of Subjects

45 CFR Part 1385

    Disabled, Grant programs--education, Grant program--social 
programs, Reporting and recordkeeping requirements

45 CFR Part 1386

    Administrative practice and procedures, Grant programs--education, 
Grant programs--social programs, Individuals with disabilities, 
Reporting and recordkeeping requirements.

45 CFR Part 1387

    Administration practice and procedures, Grant programs--education, 
Grant programs--social programs, Individuals with disabilities.

45 CFR Part 1388

    Colleges and universities, Grant programs--education, Grant 
programs--social programs, Individuals with disabilities, Research.

    Dated: July 16, 2015.
Kathy Greenlee,
Administrator, Administration for Community Living, Assistant Secretary 
for Aging, Administration on Aging.
    Approved: July 17, 2015.
Sylvia M. Burwell,
Secretary.

Regulation Text

    For reasons set forth in the preamble, under the authority of 42 
U.S.C. 15001 et seq., the Department of Health and Human Services 
revises subchapter I, chapter XIII, of title 45 of the Code of Federal 
Regulations to read as set forth below:

CHAPTER XIII--OFFICE OF HUMAN DEVELOPMENT SERVICES, DEPARTMENT OF 
HEALTH AND HUMAN SERVICES

Subchapter I--The Administration on Intellectual and Developmental 
Disabilities, Developmental Disabilities Program

PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL 
DISABILITIES PROGRAM 1386--FORMULA GRANT PROGRAMS 1387--PROJECTS OF 
NATIONAL SIGNIFICANCE 1388--THE NATIONAL NETWORK OF UNIVERSITY 
CENTERS FOR EXCELLENCE IN DEVELOPMENTAL DISABILITIES, EDUCATION, 
RESEARCH, AND SERVICE

Subchapter I--The Administration on Intellectual and Developmental 
Disabilities, Developmental Disabilities Program

PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL 
DISABILITIES PROGRAM

Sec.
1385.1 General.
1385.2 Purpose of the regulations.
1385.3 Definitions.
1385.4 Rights of individuals with developmental disabilities.
1385.5 [Reserved]
1385.6 Employment of individuals with disabilities.
1385.7 Reports to the Secretary.
1385.8 Formula for determining allotments.

[[Page 44808]]

1385.9 Grants administration requirements.


    Authority: 42 U.S.C. 15001 et seq.


Sec.  1385.1  General.

    Except as specified in Sec.  1385.4, the requirements in this part 
are applicable to the following programs and projects:
    (a) Federal Assistance to State Councils on Developmental 
Disabilities;
    (b) Protection and Advocacy for Individuals with Developmental 
Disabilities;
    (c) Projects of National Significance; and
    (d) National Network of University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service.


Sec.  1385.2  Purpose of the regulations.

    These regulations implement the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).


Sec.  1385.3  Definitions.

    For the purposes of parts 1385 through 1388 of this chapter, the 
following definitions apply:
    ACL. The term ``ACL'' means the Administration for Community Living 
within the U.S. Department of Health and Human Services.
    Act. The term ``Act'' means the Developmental Disabilities 
Assistance and Bill of Rights Act of 2000 (DD Act of 2000) (42 U.S.C. 
15001 et seq.).
    Accessibility. The term ``Accessibility'' means that programs 
funded under the DD Act of 2000 and facilities which are used in those 
programs meet applicable requirements of section 504 of the 
Rehabilitation Act of 1973 (Pub. L. 93-112), its implementing 
regulation, 45 CFR part 84, the Americans with Disabilities Act of 
1990, as amended , Title VI of the Civil Rights Act of 1964 (Pub. L. 
88-352), and its implementing regulation, 45 CFR part 80.
    (1) For programs funded under the DD Act of 2000, information shall 
be provided to applicants and program participants in plain language 
and in a manner that is accessible and timely to:
    (i) Individuals with disabilities, including accessible Web sites 
and the provision of auxiliary aids and services at no cost to the 
individual; and
    (ii) Individuals who are limited English proficient through the 
provision of language services at no cost to the individual, including:
    (A) Oral interpretation;
    (B) Written translations; and
    (C) Taglines in non-English languages indicating the availability 
of language services.
    AIDD. The term ``AIDD'' means the Administration on Intellectual 
and Developmental Disabilities, within the Administration for Community 
Living at the U.S. Department of Health and Human Services.
    Advocacy activities. The term ``advocacy activities'' means active 
support of policies and practices that promote systems change efforts 
and other activities that further advance self-determination and 
inclusion in all aspects of community living (including housing, 
education, employment, and other aspects) for individuals with 
developmental disabilities, and their families.
    Areas of emphasis. The term ``areas of emphasis'' means the areas 
related to quality assurance activities, education activities and early 
intervention activities, child care-related activities, health-related 
activities, employment-related activities, housing-related activities, 
transportation-related activities, recreation-related activities, and 
other services available or offered to individuals in a community, 
including formal and informal community supports that affect their 
quality of life.
    Assistive technology device. The term ``assistive technology 
device'' means any item, piece of equipment, or product system, whether 
acquired commercially, modified or customized, that is used to 
increase, maintain, or improve functional capabilities of individuals 
with developmental disabilities.
    Assistive technology service. The term ``assistive technology 
service'' means any service that directly assists an individual with a 
developmental disability in the selection, acquisition, or use of an 
assistive technology device. Such term includes: Conducting an 
evaluation of the needs of an individual with a developmental 
disability, including a functional evaluation of the individual in the 
individual's customary environment; purchasing, leasing, or otherwise 
providing for the acquisition of an assistive technology device by an 
individual with a developmental disability; selecting, designing, 
fitting, customizing, adapting, applying, maintaining, repairing or 
replacing an assistive technology device; coordinating and using 
another therapy, intervention, or service with an assistive technology 
device, such as a therapy, intervention, or service associated with an 
education or rehabilitation plan or program; providing training or 
technical assistance for an individual with a developmental disability, 
or, where appropriate, a family member, guardian, advocate, or 
authorized representative of an individual with a developmental 
disability; and providing training or technical assistance for 
professionals (including individuals providing education and 
rehabilitation services), employers, or other individuals who provide 
services to, employ, or are otherwise substantially involved in the 
major life functions of, an individual with developmental disabilities.
    Capacity building activities. The term ``capacity building 
activities'' means activities (e.g. training and technical assistance) 
that expand and/or improve the ability of individuals with 
developmental disabilities, families, supports, services and/or systems 
to promote, support and enhance self-determination, independence, 
productivity and inclusion in community life.
    Center. The term ``Center'' means a University Center for 
Excellence in Developmental Disabilities Education, Research, and 
Service (UCEDD) established under subtitle D of the Act.
    Child care-related activities. The term ``child care-related 
activities'' means advocacy, capacity building, and systemic change 
activities that result in families of children with developmental 
disabilities having access to and use of child care services, including 
before-school, after-school, and out-of-school services, in their 
communities.
    Culturally competent. The term ``culturally competent,'' used with 
respect to services, supports, and other assistance means that 
services, supports, or other assistance that are conducted or provided 
in a manner that is responsive to the beliefs, interpersonal styles, 
attitudes, language, and behaviors of individuals who are receiving the 
services, supports or other assistance, and in a manner that has the 
greatest likelihood of ensuring their maximum participation in the 
program involved.
    Department. The term ``Department'' means the U.S. Department of 
Health and Human Services.
    Developmental disability. The term ``developmental disability'' 
means a severe, chronic disability of an individual that:
    (1) Is attributable to a mental or physical impairment or 
combination of mental and physical impairments;
    (2) Is manifested before the individual attains age 22;
    (3) Is likely to continue indefinitely;
    (4) Results in substantial functional limitations in three or more 
of the following areas of major life activity:
    (i) Self-care;
    (ii) Receptive and expressive language;
    (iii) Learning;
    (iv) Mobility;
    (vi) Self-direction;
    (vii) Capacity for independent living; and

[[Page 44809]]

    (viii) Economic self-sufficiency.
    (5) Reflects the individual's need for a combination and sequence 
of special, interdisciplinary or generic services, individualized 
supports, or other forms of assistance that are of lifelong or extended 
duration and are individually planned and coordinated.
    (6) An individual from birth to age nine, inclusive, who has a 
substantial developmental delay or specific congenital or acquired 
condition, may be considered to have a developmental disability without 
meeting three or more of the criteria described in paragraphs (1) 
through (5) of this definition, if the individual, without services and 
supports, has a high probability of meeting those criteria later in 
life.
    Early intervention activities. The term ``early intervention 
activities'' means advocacy, capacity building, and systemic change 
activities provided to infants and young children described in the 
definition of ``developmental disability'' and their families to 
enhance the development of the individuals to maximize their potential, 
and the capacity of families to meet the special needs of the 
individuals.
    Education activities. The term ``education activities'' means 
advocacy, capacity building, and systemic change activities that result 
in individuals with developmental disabilities being able to access 
appropriate supports and modifications when necessary, to maximize 
their educational potential, to benefit from lifelong educational 
activities, and to be integrated and included in all facets of student 
life.
    Employment-related activities. The term ``employment-related 
activities'' means advocacy, capacity building, and systemic change 
activities that result in individuals with developmental disabilities 
acquiring, retaining, or advancing in paid employment, including 
supported employment or self-employment, in integrated settings in a 
community.
    Family support services. The term ``family support services'' means 
services, supports, and other assistance, provided to families with a 
member or members who have developmental disabilities, that are 
designed to: Strengthen the family's role as primary caregiver; prevent 
inappropriate out-of-the-home placement of the members and maintain 
family unity; and reunite, whenever possible, families with members who 
have been placed out of the home. This term includes respite care, 
provision of rehabilitation technology and assistive technology, 
personal assistance services, parent training and counseling, support 
for families headed by aging caregivers, vehicular and home 
modifications, and assistance with extraordinary expenses associated 
with the needs of individuals with developmental disabilities.
    Fiscal year. The term ``fiscal year'' means the Federal fiscal year 
unless otherwise specified.
    Governor. The term ``Governor'' means the chief executive officer 
of a State, as that term is defined in the Act, or his or her designee 
who has been formally designated to act for the Governor in carrying 
out the requirements of the Act and the regulations.
    Health-related activities. The term ``health-related activities'' 
means advocacy, capacity building, and systemic change activities that 
result in individuals with developmental disabilities having access to 
and use of coordinated health, dental, mental health, and other human 
and social services, including prevention activities, in their 
communities.
    Housing-related activities. The term ``housing-related activities'' 
means advocacy, capacity building, and systemic change activities that 
result in individuals with developmental disabilities having access to 
and use of housing and housing supports and services in their 
communities, including assistance related to renting, owning, or 
modifying an apartment or home.
    Inclusion. The term ``inclusion'', used with respect to individuals 
with developmental disabilities, means the acceptance and encouragement 
of the presence and participation of individuals with developmental 
disabilities, by individuals without disabilities, in social, 
educational, work, and community activities, that enable individuals 
with developmental disabilities to have friendships and relationships 
with individuals and families of their own choice; live in homes close 
to community resources, with regular contact with individuals without 
disabilities in their communities; enjoy full access to and active 
participation in the same community activities and types of employment 
as individuals without disabilities; and take full advantage of their 
integration into the same community resources as individuals without 
disabilities, living, learning, working, and enjoying life in regular 
contact with individuals without disabilities.
    Individualized supports. The term ``individualized supports'' means 
supports that: Enable an individual with a developmental disability to 
exercise self-determination, be independent, be productive, and be 
integrated and included in all facets of community life; designed to 
enable such individual to control such individual's environment, 
permitting the most independent life possible; and prevent placement 
into a more restrictive living arrangement than is necessary and enable 
such individual to live, learn, work, and enjoy life in the community; 
and include early intervention services, respite care, personal 
assistance services, family support services, supported employment 
services support services for families headed by aging caregivers of 
individuals with developmental disabilities, and provision of 
rehabilitation technology and assistive technology, and assistive 
technology services.
    Integration. The term ``integration,'' means exercising the equal 
rights of individuals with developmental disabilities to access and use 
the same community resources as are used by and available to other 
individuals.
    Not-for-profit. The term ``not-for-profit,'' used with respect to 
an agency, institution or organization, means an agency, institution, 
or organization that is owned or operated by one or more corporations 
or associations, no part of the net earnings of which injures, or may 
lawfully inure, to the benefit of any private shareholder or 
individual.
    Personal assistance services. The term ``personal assistance 
services'' means a range of services provided by one or more 
individuals designed to assist an individual with a disability to 
perform daily activities, including activities on or off a job, that 
such individual would typically perform if such individual did not have 
a disability. Such services shall be designed to increase such 
individual's control in life and ability to perform everyday 
activities, including activities on or off a job.
    Prevention activities. The term ``prevention activities'' means 
activities that address the causes of developmental disabilities and 
the exacerbation of functional limitation, such as activities that: 
Eliminate or reduce the factors that cause or predispose individuals to 
developmental disabilities or that increase the prevalence of 
developmental disabilities; increase the early identification of 
problems to eliminate circumstances that create or increase functional 
limitations; and mitigate against the effects of developmental 
disabilities throughout the lifespan of an individual.
    Productivity. The term ``productivity'' means engagement in income-
producing work that is measured by increased income, improved 
employment status, or job advancement, or engagement in

[[Page 44810]]

work that contributes to a household or community.
    Protection and Advocacy (P&A) Agency. The term ``Protection and 
Advocacy (P&A) Agency'' means a protection and advocacy system 
established in accordance with section 143 of the Act.
    Quality assurance activities. The term ``quality assurance 
activities'' means advocacy, capacity building, and systemic change 
activities that result in improved consumer and family-centered quality 
assurance and that result in systems of quality assurance and consumer 
protection that include monitoring of services, supports, and 
assistance provided to an individual with developmental disabilities 
that ensures that the individual will not experience abuse, neglect, 
sexual or financial exploitation, or violation of legal or human 
rights; and will not be subject to the inappropriate use of restraints 
or seclusion; include training in leadership, self-advocacy, and self-
determination for individuals with developmental disabilities, their 
families, and their guardians to ensure that those individuals will not 
experience abuse, neglect, sexual or financial exploitation, or 
violation of legal or human rights; and will not be subject to the 
inappropriate use of restraints or seclusion; or include activities 
related to interagency coordination and systems integration that result 
in improved and enhanced services, supports, and other assistance that 
contribute to and protect the self-determination, independence, 
productivity, and integration and inclusion in all facets of community 
life of individuals with developmental disabilities.
    Rehabilitation technology. The term ``rehabilitation technology'' 
means the systematic application of technologies, engineering 
methodologies, or scientific principles to meet the needs of, and 
address the barriers confronted by individuals with developmental 
disabilities in areas that include education, rehabilitation, 
employment, transportation, independent living, and recreation. Such 
term includes rehabilitation engineering, and the provision of 
assistive technology devices and assistive technology services.
    Required planning documents. The term ``required planning 
documents'' means the State plans required by Sec.  1386.30 of this 
chapter for the State Council on Developmental Disabilities, the Annual 
Statement of Goals and Priorities required by Sec.  1386.22(c) of this 
chapter for P&As, and the five-year plan and annual report required by 
Sec.  1388.7 of this chapter for UCEDDs.
    Secretary. The term ``Secretary'' means the Secretary of the U.S. 
Department of Health and Human Services.
    Self-determination activities. The term ``self-determination 
activities'' means activities that result in individuals with 
developmental disabilities, with appropriate assistance, having the 
ability and opportunity to communicate and make personal decisions; the 
ability and opportunity to communicate choices and exercise control 
over the type and intensity of services, supports, and other assistance 
the individuals receive; the authority to control resources to obtain 
needed services, supports, and other assistance; opportunities to 
participate in, and contribute to, their communities; and support, 
including financial support, to advocate for themselves and others to 
develop leadership skills through training in self-advocacy to 
participate in coalitions, to educate policymakers, and to play a role 
in the development of public policies that affect individuals with 
developmental disabilities.
    State. The term ``State'':
    (1) Except as applied to the University Centers of Excellence in 
Developmental Disabilities Education, Research and Service in section 
155 of the Act, includes each of the several States of the United 
States, the District of Columbia, the Commonwealth of Puerto Rico, the 
United States Virgin Islands, Guam, American Samoa, and the 
Commonwealth of the Northern Mariana Islands.
    (2) For the purpose of UCEDDs in section 155 of the Act and part 
1388 of this chapter, ``State'' means each of the several States of the 
United States, the District of Columbia, the Commonwealth of Puerto 
Rico, the United States Virgin Islands, and Guam.
    State Council on Developmental Disabilities (SCDD). The term 
``State Council on Developmental Disabilities (SCDD)'' means a Council 
established under section 125 of the DD Act.
    Supported employment services. The term ''supported employment 
services'' means services that enable individuals with developmental 
disabilities to perform competitive work in integrated work settings, 
in the case of individuals with developmental disabilities for whom 
competitive employment has not traditionally occurred; or for whom 
competitive employment has been interrupted or intermittent as a result 
of significant disabilities; and who, because of the nature and 
severity of their disabilities, need intensive supported employment 
services or extended services in order to perform such work.
    Systemic change activities. The term ``systemic change activities'' 
means a sustainable, transferable and replicable change in some aspect 
of service or support availability, design or delivery that promotes 
positive or meaningful outcomes for individuals with developmental 
disabilities and their families.
    Transportation-related activities. The term ``transportation-
related activities'' means advocacy, capacity building, and systemic 
change activities that result in individuals with developmental 
disabilities having access to and use of transportation.
    UCEDD. The term ``UCEDD'' means University Centers for Excellence 
in Developmental Disabilities Education, Research, and Service, also 
known by the term ``Center'' under section 102(5) of the Act.
    Unserved and underserved. The term ``unserved and underserved'' 
includes populations such as individuals from racial and ethnic 
minority backgrounds, disadvantaged individuals, individuals with 
limited English proficiency, individuals from underserved geographic 
areas (rural or urban), and specific groups of individuals within the 
population of individuals with developmental disabilities, including 
individuals who require assistive technology in order to participate in 
community life.


Sec.  1385.4  Rights of individuals with developmental disabilities.

    (a) Section 109 of the Act, Rights of Individuals with 
Developmental Disabilities (42 U.S.C. 15009), is applicable to the 
SCDD.
    (b) In order to comply with section 124(c)(5)(H) of the Act (42 
U.S.C. 15024(c)(5)(H)), regarding the rights of individuals with 
developmental disabilities, the State participating in the SCDD program 
must meet the requirements of 45 CFR 1386.30(f).
    (c) Applications from UCEDDs also must contain an assurance that 
the human rights of individuals assisted by this program will be 
protected consistent with section 101(c) (see section 154(a)(3)(D) of 
the Act).


Sec.  1385.5  [Reserved]


Sec.  1385.6  Employment of individuals with disabilities.

    Each grantee which receives Federal funding under the Act must meet 
the requirements of section 107 of the Act (42 U.S.C. 15007) regarding 
affirmative action. The grantee must take affirmative action to employ 
and advance in employment and otherwise

[[Page 44811]]

treat qualified individuals with disabilities without discrimination 
based upon their physical or mental disability in all employment 
practices such: Advertising, recruitment, employment, rates of pay or 
other forms of compensation, selection for training, including 
apprenticeship, upgrading, demotion or transfer, and layoff or 
termination. This obligation is in addition to the requirements of 45 
CFR part 84, subpart B, prohibiting discrimination in employment 
practices on the basis of disability in programs receiving assistance 
from the Department. Recipients of funds under the Act also may be 
bound by the provisions of the Americans with Disabilities Act of 1990 
(Pub. L. 101-336, 42 U.S.C. 12101 et seq.) with respect to employment 
of individuals with disabilities. Failure to comply with section 107 of 
the Act may result in loss of Federal funds under the Act. If a 
compliance action is taken, the State will be given reasonable notice 
and an opportunity for a hearing as provided in subpart E of 45 CFR 
part 1386.


Sec.  1385.7  Reports to the Secretary.

    All grantee submission of plans, applications and reports must 
label goals, activities and results clearly in terms of the following: 
Area of emphasis, type of activity (advocacy, capacity building, 
systemic change), and categories of measures of progress.


Sec.  1385.8  Formula for determining allotments.

    The Secretary, or his or her designee, will allocate funds 
appropriated under the Act for the State Councils on Developmental 
Disabilities and the P&As as directed in sections 122 and 142 of the 
Act (42 U.S.C. 15022 and 15042).


Sec.  1385.9  Grants administration requirements.

    (a) The following parts of this title and title 2 CFR apply to 
grants funded under parts 1386 and 1388 of this chapter, and to grants 
for Projects of National Significance under section 162 of the Act (42 
U.S.C. 15082):
    (1) 45 CFR part 16--Procedures of the Departmental Grant Appeals 
Board.
    (2) 45 CFR part 46--Protection of Human Subjects.
    (3) 45 CFR part 75--Uniform Administrative Requirements, Cost 
Principles, and Audit Requirements for HHS Award.
    (4) 2 CFR part 376--Nonprocurement Debarment and Suspension.
    (5) 45 CFR part 80--Nondiscrimination under Programs Receiving 
Federal Assistance through the Department of Health and Human Services 
Effectuation of title VI of the Civil Rights Act of 1964.
    (5) 45 CFR part 81--Practice and Procedure for Hearings under part 
80 of this title.
    (6) 45 CFR part 84--Nondiscrimination on the Basis of Handicap in 
Programs and Activities Receiving Federal Financial Assistance.
    (7) 45 CFR part 86--Nondiscrimination on the Basis of Sex in 
Education Programs and Activities Receiving Federal Financial 
Assistance.
    (8) 45 CFR part 91--Nondiscrimination on the Basis of Age in 
Programs or Activities Receiving Federal Financial Assistance from HHS.
    (9) 45 CFR part 93--New Restrictions on Lobbying.
    (b) The Departmental Appeals Board also has jurisdiction over 
appeals by any grantee that has received grants under the UCEDD 
programs or for Projects of National Significance. The scope of the 
Board's jurisdiction concerning these appeals is described in 45 CFR 
part 16.
    (c) The Departmental Appeals Board also has jurisdiction to decide 
appeals brought by the States concerning any disallowances taken by the 
Secretary, or his or her designee, with respect to specific 
expenditures incurred by the States or by contractors or sub grantees 
of States. This jurisdiction relates to funds provided under the two 
formula programs--subtitle B of the Act--Federal Assistance to State 
Councils on Developmental Disabilities, and subtitle C of the Act--
Protection and Advocacy for Individuals with Developmental 
Disabilities. Appeals filed by States shall be decided in accordance 
with 45 CFR part 16.
    (d) In making audits and examination to any books, documents, 
papers, and transcripts of records of SCDDs, the P&As, the UCEDDs and 
the Projects of National Significance grantees and sub grantees, as 
provided for in 45 CFR part 75, the Department will keep information 
about individual clients confidential to the maximum extent permitted 
by law and regulations.
    (e)(1) The Department or other authorized Federal officials may 
access client and case eligibility records or other records of a P&A 
system for audit purposes, and for purposes of monitoring system 
compliance pursuant to section 103(b) of the Act. However, such 
information will be limited pursuant to section 144(c) of the Act. No 
personal identifying information such as name, address, and social 
security number will be obtained. Only eligibility information will be 
obtained regarding the type and level of disability of individuals 
being served by the P&A and the nature of the issue concerning which 
the system represented an individual.
    (2) Notwithstanding paragraph (e)(1) of this section, if an audit, 
monitoring review, evaluation, or other investigation by the Department 
produces evidence that the system has violated the Act or the 
regulations, the system will bear the burden of proving its compliance. 
The system's inability to establish compliance because of the 
confidentiality of records will not relieve it of this responsibility. 
The P&A may elect to obtain a release regarding personal information 
and privacy from all individuals requesting or receiving services at 
the time of intake or application. The release shall state that only 
information directly related to client and case eligibility will be 
subject to disclosure to officials of the Department.

PART 1386--FORMULA GRANT PROGRAMS

Subpart A--Basic Requirements
Sec.
1386.1 General.
1386.2 Obligation of funds.
1386.3 Liquidation of obligations.
1386.4 [Reserved]
Subpart B--Protection and Advocacy for Individuals With Developmental 
Disabilities (PADD)
1386.19 Definitions.
1386.20 Agency designated as the State Protection and Advocacy 
System.
1386.21 Requirements and authority of the State Protection and 
Advocacy System.
1386.22 Periodic reports: State Protection and Advocacy System.
1386.23 Non-allowable costs for the State Protection and Advocacy 
System.
1386.24 Allowable litigation costs.
Subpart C--Access to Records, Service Providers, and Individuals With 
Developmental Disabilities
1386.25 Access to records.
1386.26 Denial or delay of access to records.
1386.27 Access to service providers and individuals with 
developmental disabilities.
1386.28 Confidentiality of State Protection and Advocacy System 
records.
Subpart D--Federal Assistance to State Councils on Developmental 
Disabilities
1386.30 State plan requirements.
1386.31 State plan submittal and approval.
1386.32 Periodic reports: Federal assistance to State Councils on 
Developmental Disabilities.
1386.33 Protection of employees interest.
1386.34 Designated State Agency.
1386.35 Allowable and non-allowable costs for Federal assistance to 
State Councils on Developmental Disabilities.
1386.36 Final disapproval of the State plan or plan amendments.

[[Page 44812]]

Subpart E--Practice and Procedure for Hearings Pertaining to States' 
Conformity and Compliance With Developmental Disabilities State Plans, 
Reports, and Federal Requirements
General
1386.80 Definitions.
1386.81 Scope of rules.
1386.82 Records to the public.
1386.83 Use of gender and number.
1386.84 Suspension of rules.
1386.85 Filling and service of papers.
Preliminary Matters--Notice and Parties
1386.90 Notice of hearing or opportunity for hearing.
1386.91 Time of hearing.
1386.92 Place.
1386.93 Issues at hearing.
1386.94 Request to participate in hearing.
Hearing Procedures
1386.100 Who presides.
1386.101 Authority of presiding officer.
1386.102 Rights of parties.
1386.103 Discovery.
1386.104 Evidentiary purpose.
1386.105 Evidence.
1386.106 Exclusion from hearing for misconduct.
1386.107 Unsponsored written material.
1386.108 Official transcript.
1386.109 Record for decision.
Post-Hearing Procedures, Decisions
1386.110 Post-hearing briefs.
1386.111 Decisions following hearing.
1386.112 Effective date of decision by the Secretary.

    Authority:  42 U.S.C. 15001 et seq.

Subpart A--Basic Requirements


Sec.  1386.1  General.

    All rules under this subpart are applicable to both the State 
Councils on Developmental Disabilities and the agency designated as the 
State Protection and Advocacy (P&As) System.


Sec.  1386.2  Obligation of funds.

    (a) Funds which the Federal Government allots under this part 
during a Federal fiscal year are available for obligation by States for 
a two-year period beginning with the first day of the Federal fiscal 
year in which the grant is awarded.
    (b)(1) A State incurs an obligation for acquisition of personal 
property or for the performance of work on the date it makes a binding, 
legally enforceable, written commitment, or when the State Council on 
Developmental Disabilities enters into an Interagency Agreement with an 
agency of State government for acquisition of personal property or for 
the performance of work.
    (2) A State incurs an obligation for personal services, for 
services performed by public utilities, for travel or for rental of 
real or personal property on the date it receives the services, its 
personnel takes the travel, or it uses the rented property.
    (c)(1) A Protection & Advocacy System may elect to treat entry of 
an appearance in judicial and administrative proceedings on behalf of 
an individual with a developmental disability as a basis for obligating 
funds for the litigation costs. The amount of the funds obligated must 
not exceed a reasonable estimate of the costs, and the way the estimate 
was calculated must be documented.
    (2) For the purpose of this paragraph (c), litigation costs means 
expenses for court costs, depositions, expert witness fees, travel in 
connection with a case and similar costs, and costs resulting from 
litigation in which the agency has represented an individual with 
developmental disabilities (e.g., monitoring court orders, consent 
decrees), but not for salaries of employees of the P&A. All funds made 
available for Federal assistance to State Councils on Developmental 
Disabilities and to the P&As obligated under this paragraph (c) are 
subject to the requirement of paragraph (a) of this section. These 
funds, if reobligated, may be reobligated only within a two-year period 
beginning with the first day of the Federal fiscal year in which the 
funds were originally awarded.


Sec.  1386.3  Liquidation of obligations.

    (a) All obligations incurred pursuant to a grant made under the Act 
for a specific Federal fiscal year, must be liquidated within two years 
of the close of the Federal fiscal year in which the grant was awarded.
    (b) The Secretary, or his or her designee, may waive the 
requirements of paragraph (a) of this section when State law impedes 
implementation or the amount of obligated funds to be liquidated is in 
dispute.
    (c) Funds attributable to obligations which are not liquidated in 
accordance with the provisions of this section revert to the Federal 
Government.


Sec.  1386.4  [Reserved]

Subpart B--Protection and Advocacy for Individuals With 
Developmental Disabilities (PADD)


Sec.  1386.19  Definitions.

    As used in this subpart and subpart C of this part, the following 
definitions apply:
    Abuse. The term ``abuse'' means any act or failure to act which was 
performed, or which was failed to be performed, knowingly, recklessly, 
or intentionally, and which caused, or may have caused, injury or death 
to an individual with developmental disabilities, and includes but is 
not limited to such acts as: Verbal, nonverbal, mental and emotional 
harassment; rape or sexual assault; striking; the use of excessive 
force when placing such an individual in bodily restraints; the use of 
bodily or chemical restraints which is not in compliance with Federal 
and State laws and regulations, or any other practice which is likely 
to cause immediate physical or psychological harm or result in long 
term harm if such practices continue. In addition, the P&A may 
determine, in its discretion that a violation of an individual's legal 
rights amounts to abuse, such as if an individual is subject to 
significant financial exploitation.
    American Indian Consortium. The term ``American Indian Consortium'' 
means any confederation of 2 or more recognized American Indian Tribes, 
created through the official resident population of 150,000 enrolled 
tribal members and a contiguous territory of Indian lands in two or 
more States.
    Complaint. The term ``complaint'' includes, but is not limited to, 
any report or communication, whether formal or informal, written or 
oral, received by the P&A system, including media accounts, newspaper 
articles, electronic communications, telephone calls (including 
anonymous calls) from any source alleging abuse or neglect of an 
individual with a developmental disability.
    Designating official. The term ``designating official'' means the 
Governor or other State official, who is empowered by the State 
legislature or Governor to designate the State official or public or 
private agency to be accountable for the proper use of funds by and 
conduct of the agency designated to administer the P&A system.
    Full investigation. The term ``full investigation'' means access to 
service providers, individuals with developmental disabilities and 
records authorized under these regulations, that are necessary for a 
P&A system to make a determination about whether alleged or suspected 
instances of abuse and neglect are taking place or have taken place. 
Full investigations may be conducted independently or in cooperation 
with other agencies authorized to conduct similar investigations.
    Legal guardian, Conservator, and Legal representative. The terms 
``legal guardian,'' ``conservator,'' and ``legal representative'' all 
mean a parent of a minor, unless the State has appointed another legal 
guardian under applicable State law, or an individual appointed and 
regularly reviewed by a State court or agency empowered under State law 
to appoint and review such officers, and having authority to make all 
decisions

[[Page 44813]]

on behalf of individuals with developmental disabilities. It does not 
include persons acting only as a representative payee, persons acting 
only to handle financial payments, executors and administrators of 
estates, attorneys or other persons acting on behalf of an individual 
with developmental disabilities only in individual legal matters, or 
officials or their designees responsible for the provision of services, 
supports, and other assistance to an individual with developmental 
disabilities.
    Neglect. The term ``neglect'' means a negligent act or omission by 
an individual responsible for providing services, supports or other 
assistance which caused or may have caused injury or death to an 
individual with a developmental disability(ies) or which placed an 
individual with developmental disability(ies) at risk of injury or 
death, and includes acts or omissions such as failure to: establish or 
carry out an appropriate individual program plan or treatment plan 
(including a discharge plan); provide adequate nutrition, clothing, or 
health care to an individual with developmental disabilities; or 
provide a safe environment which also includes failure to maintain 
adequate numbers of trained staff or failure to take appropriate steps 
to prevent self-abuse, harassment, or assault by a peer.
    Probable cause. The term ``probable cause'' means a reasonable 
ground for belief that an individual with developmental disability(ies) 
has been, or may be, subject to abuse or neglect, or that the health or 
safety of the individual is in serious and immediate jeopardy. The 
individual making such determination may base the decision on 
reasonable inferences drawn from his or her experience or training 
regarding similar incidents, conditions or problems that are usually 
associated with abuse or neglect.
    State Protection and Advocacy System. The term ``State Protection 
and Advocacy System'' is synonymous with the term ``P&A'' used 
elsewhere in this regulation, and the terms ``System'' and ``Protection 
and Advocacy System'' used in this part and in subpart C of this part.


Sec.  1386.20  Agency designated as the State Protection and Advocacy 
System.

    (a) The designating official must designate the State official or 
public or private agency to be accountable for proper use of funds and 
conduct of the Protection and Advocacy System.
    (b) An agency of the State or private agency providing direct 
services, including guardianship services, may not be designated as the 
agency to administer the Protection and Advocacy System.
    (c) In the event that an entity outside of the State government is 
designated to carry out the program, the designating official or entity 
must assign a responsible State official to receive, on behalf of the 
State, notices of disallowances and compliance actions as the State is 
accountable for the proper and appropriate expenditure of Federal 
funds.
    (d)(1) Prior to any redesignation of the agency which administers 
and operates the State Protection and Advocacy System, the designating 
official must give written notice of the intention to make the 
redesignation to the agency currently administering and operating the 
State Protection and Advocacy System by registered or certified mail. 
The notice must indicate that the proposed redesignation is being made 
for good cause. The designating official also must publish a public 
notice of the proposed action. The agency and the public shall have a 
reasonable period of time, but not less than 45 days, to respond to the 
notice.
    (2) The public notice must include:
    (i) The Federal requirements for the State Protection and Advocacy 
System for individuals with developmental disabilities (section 143 of 
the Act); and where applicable, the requirements of other Federal 
advocacy programs administered by the State Protection and Advocacy 
System;
    (ii) The goals and function of the State's Protection and Advocacy 
System including the current Statement of Goals and Priorities;
    (iii) The name and address of the agency currently designated to 
administer and operate the State Protection and Advocacy System, and an 
indication of whether the agency also operates other Federal advocacy 
programs;
    (iv) A description of the current agency operating and 
administering the Protection and Advocacy System including, as 
applicable, descriptions of other Federal advocacy programs it 
operates;
    (v) A clear and detailed explanation of the good cause for the 
proposed redesignation;
    (vi) A statement suggesting that interested persons may wish to 
write the current agency operating and administering the State 
Protection and Advocacy System at the address provided in paragraph 
(d)(2)(iii) of this section to obtain a copy of its response to the 
notice required by paragraph (d)(1) of this section. Copies must be in 
a format accessible to individuals with disabilities (including plain 
language), and language assistance services will be provided to 
individuals with limited English proficiency, such as translated 
materials or interpretation, upon request;
    (vii) The name of the new agency proposed to administer and operate 
the State Protection and Advocacy System under the Developmental 
Disabilities Program. This agency will be eligible to administer other 
Federal advocacy programs;
    (viii) A description of the system which the new agency would 
administer and operate, including a description of all other Federal 
advocacy programs the agency would operate;
    (ix) The timetable for assumption of operations by the new agency 
and the estimated costs of any transfer and start-up operations; and
    (x) A statement of assurance that the proposed new designated State 
Protection and Advocacy System will continue to serve existing clients 
and cases of the current P&A system or refer them to other sources of 
legal advocacy as appropriate, without disruption.
    (3) The public notice as required by paragraph (d)(1) of this 
section, must be in a format accessible to individuals with 
disabilities, and language assistance services will be provided to 
individuals with limited English proficiency, such as translated 
materials or interpretation, upon request to individuals with 
developmental disabilities or their representatives. The designating 
official must provide for publication of the notice of the proposed 
redesignation using the State register, statewide newspapers, public 
service announcements on radio and television, or any other legally 
equivalent process. Copies of the notice must be made generally 
available to individuals with developmental disabilities and mental 
illness who live in residential facilities through posting or some 
other means.
    (4) After the expiration of the public comment period required in 
paragraph (d)(1) of this section, the designating official must conduct 
a public hearing on the redesignation proposal. After consideration of 
all public and agency comments, the designating official must give 
notice of the final decision to the currently designated agency and the 
public through the same means used under paragraph (d)(3) of this 
section. This notice must include a clear and detailed explanation of 
the good cause finding. If the notice to the currently designated 
agency states that the redesignation will take place, it also must 
inform the agency of its right to

[[Page 44814]]

appeal this decision to the Secretary, or his or her designee, the 
authority to hear appeals by the Secretary, or his or her designee, and 
provide a summary of the public comments received in regard to the 
notice of intent to redesignate and the results of the public hearing 
and its responses to those comments. The redesignation shall not be 
effective until 10 working days after notifying the current agency that 
administers and operates the State Protection and Advocacy System or, 
if the agency appeals, until the Secretary, or his or her designee, has 
considered the appeal.
    (e)(1) Following notification as indicated in paragraph (d)(4) of 
this section, the agency that administers and operates the State 
Protection and Advocacy System which is the subject of such action, may 
appeal the redesignation to the Secretary, or his or her designee. To 
do so, the agency that administers and operates the State Protection 
and Advocacy System must submit an appeal in writing to the Secretary, 
or his or her designee, within 20 days of receiving official 
notification under paragraph (d)(4) of this section, with a separate 
copy sent by registered of certified mail to the designating official 
who made the decision concerning redesignation.
    (2) In the event that the agency subject to redesignation does 
exercise its right to appeal under paragraph (e)(1) of this section, 
the designating official must give public notice of the Secretary's, or 
his or her designated person's, final decision regarding the appeal 
through the same means utilized under paragraph (d)(3) of this section 
within 10 working days of receipt of the Secretary's, or his or her 
designee's, final decision under paragraph (e)(6) of this section.
    (3) The designating official within 10 working days from the 
receipt of a copy of the appeal must provide written comments to the 
Secretary, or his or her designee, (with a copy sent by registered or 
certified mail to the Protection and Advocacy agency appealing under 
paragraph (e)(1) of this section), or withdraw the redesignation. The 
comments must include a summary of the public comments received in 
regard to the notice of intent to redesignate and the results of the 
public hearing and its responses to those comments.
    (4) In the event that the designating official withdraws the 
redesignation while under appeal pursuant to paragraph (e)(1) of this 
section, the designating official must notify the Secretary, or his or 
her designee, and the current agency, and must give public notice of 
his or her decision through the same means utilized under paragraph 
(d)(3) of this section.
    (5) As part of their submission under paragraph (e)(1) or (3) of 
this section, either party may request, and the Secretary, or his or 
her designee, may grant an opportunity for a meeting with the 
Secretary, or his or her designee, at which representatives of both 
parties will present their views on the issues in the appeal. The 
meeting will be held within 20 working days of the submission of 
written comments by the designating official under paragraph (e)(2) of 
this section. The Secretary, or his or her designee, will promptly 
notify the parties of the date and place of the meeting.
    (6) Within 30 days of the informal meeting under paragraph (e)(5) 
of this section, or, if there is no informal meeting under paragraph 
(e)(5) of this section, within 30 days of the submission under 
paragraph (e)(3) of this section, the Secretary, or his or her 
designee, will issue to the parties a final written decision on whether 
the redesignation was for good cause as defined in paragraph (d)(1) of 
this section. The Secretary, or his or her designee, will receive 
comments on the record from agencies administering the Federal advocacy 
programs that will be directly affected by the proposed redesignation. 
The P&A and the designating official will have an opportunity to 
comment on the submissions of the Federal advocacy programs. The 
Secretary, or his or her designee, shall consider the comments of the 
Federal programs, the P&A and the designating official in making his 
final decision on the appeal.
    (f)(1) Within 30 days after the redesignation becomes effective 
under paragraph (d)(4) of this section, the designating official must 
submit an assurance to the Secretary, or his or her designee, that the 
newly designated agency that will administer and operate the State 
Protection and Advocacy System meets the requirements of the statute 
and the regulations.
    (2) In the event that the agency administering and operating the 
State Protection and Advocacy System subject to redesignation does not 
exercise its rights to appeal within the period provided under 
paragraph (e)(1) of this section, the designating official must provide 
to the Secretary, or his or her designee, documentation that the agency 
was redesignated for good cause. Such documentation must clearly 
demonstrate that the Protection and Advocacy agency subject to 
redesignation was not redesignated for any actions or activities which 
were carried out under section 143 of the Act, this regulation or any 
other Federal advocacy program's legislation or regulations.


Sec.  1386.21  Requirements and authority of the State Protection and 
Advocacy System.

    (a) In order for a State to receive Federal funding for Protection 
and Advocacy activities under this subpart, as well as for the State 
Council on Developmental Disabilities activities (subpart D of this 
part), the Protection and Advocacy System must meet the requirements of 
section 143 and 144 of the Act (42 U.S.C. 15043 and 15044) and that 
system must be operational.
    (b) Allotments must be used to supplement and not to supplant the 
level of non-Federal funds available in the State for activities under 
the Act, which shall include activities on behalf of individuals with 
developmental disabilities to remedy abuse, neglect, and violations of 
rights as well as information and referral activities.
    (c) A P&A shall not implement a policy or practice restricting the 
remedies that may be sought on behalf of individuals with developmental 
disabilities or compromising the authority of the P&A to pursue such 
remedies through litigation, legal action or other forms of advocacy. 
Under this requirement, States may not establish a policy or practice, 
which requires the P&A to: Obtain the State's review or approval of the 
P&A's plans to undertake a particular advocacy initiative, including 
specific litigation (or to pursue litigation rather than some other 
remedy or approach); refrain from representing individuals with 
particular types of concerns or legal claims, or refrain from otherwise 
pursuing a particular course of action designed to remedy a violation 
of rights, such as educating policymakers about the need for 
modification or adoption of laws or policies affecting the rights of 
individuals with developmental disabilities; restrict the manner of the 
P&A's investigation in a way that is inconsistent with the System's 
required authority under the DD Act; or similarly interfere with the 
P&A's exercise of such authority. The requirements of this paragraph 
(c) shall not prevent P&As, including those functioning as agencies 
within State governments, from developing case or client acceptance 
criteria as part of the annual priorities identified by the P&A as 
described in Sec.  1386.23(c). Clients must be informed at the time 
they apply for services of such criteria.
    (d) A Protection and Advocacy System shall be free from hiring 
freezes, reductions in force, prohibitions on staff travel, or other 
policies, imposed by the

[[Page 44815]]

State, to the extent that such policies would impact system program 
staff or functions funded with Federal funds, and would prevent the 
system from carrying out its mandates under the Act.
    (e) A Protection and Advocacy System shall have sufficient staff, 
qualified by training and experience, to carry out the responsibilities 
of the system in accordance with the priorities of the system and 
requirements of the Act. These responsibilities include the 
investigation of allegations of abuse, neglect and representations of 
individuals with developmental disabilities regarding rights 
violations.
    (f) A Protection and Advocacy System may exercise its authority 
under State law where the State authority exceeds the authority 
required by the Developmental Disabilities Assistance and Bill of 
Rights Act of 2000. However, State law must not diminish the required 
authority of the Protection and Advocacy System as set by the Act.
    (g) Each Protection and Advocacy System that is a public system 
without a multimember governing or advisory board must establish an 
advisory council in order to provide a voice for individuals with 
developmental disabilities. The Advisory Council shall advise the 
Protection and Advocacy System on program policies and priorities. The 
Advisory Council and Governing Board shall be comprised of a majority 
of individuals with disabilities who are eligible for services, have 
received or are receiving services, parents, family members, guardians, 
advocates, or authorized representatives of such individuals.
    (h) Prior to any Federal review of the State program, a 30-day 
notice and an opportunity for public comment must be published in the 
Federal Register. Reasonable effort shall be made by AIDD to seek 
comments through notification to major disability advocacy groups, the 
State Bar, disability law resources, the State Councils on 
Developmental Disabilities, and the University Centers for Excellence 
in Developmental Disabilities Education, Research, and Service, for 
example, through newsletters and publication of those organizations. 
The findings of public comments may be consolidated if sufficiently 
similar issues are raised and they shall be included in the report of 
the onsite visit.
    (i) Before the Protection and Advocacy System releases information 
to individuals not otherwise authorized to receive it, the Protection 
and Advocacy System must obtain written consent from the client 
requesting assistance or his or her guardian.
    (j) Contracts for program operations. (1) An eligible P&A system 
may contract for the operation of part of its program with another 
public or private nonprofit organization with demonstrated experience 
working with individuals with developmental disabilities, provided 
that:
    (i) The eligible P&A system institutes oversight and monitoring 
procedures which ensure that any and all subcontractors will be able to 
meet all applicable terms, conditions and obligations of the Federal 
grant, including but not limited to the ability to pursue all forms of 
litigation under the DD Act;
    (ii) The P&A exercises appropriate oversight to ensure that the 
contracting organization meets all applicable responsibilities and 
standards which apply to P&As, including but not limited to, the 
confidentiality provisions in the DD Act and regulations, ethical 
responsibilities, program accountability and quality controls;
    (2) Any eligible P&A system should work cooperatively with existing 
advocacy agencies and groups and, where appropriate, consider entering 
into contracts for protection and advocacy services with organizations 
already working on behalf of individuals with developmental 
disabilities.


Sec.  1386.22  Periodic reports: State Protection and Advocacy System.

    (a) By January 1 of each year, each State Protection and Advocacy 
System shall submit to AIDD, an Annual Program Performance Report. In 
order to be accepted, the Report must meet the requirements of section 
144(e) of the Act (42 U.S.C. 15044), the applicable regulation and 
include information on the System's program necessary for the 
Secretary, or his or her designee, to comply with section 105(1), (2), 
and (3) of the Act (42 U.S.C. 15005). The Report shall describe the 
activities, accomplishments, and expenditures of the system during the 
preceding fiscal year. Reports shall include a description of the 
system's goals and the extent to which the goals were achieved, 
barriers to their achievement; the process used to obtain public input, 
the nature of such input, and how such input was used; the extent to 
which unserved or underserved individuals or groups, particularly from 
ethnic or racial groups or geographic regions (e.g., rural or urban 
areas) were the target of assistance or service; and other such 
information on the Protection and Advocacy System's activities 
requested by AIDD.
    (b) Financial status reports (standard form 425) must be submitted 
by the agency administering and operating the State Protection and 
Advocacy System semiannually.
    (c) By January 1 of each year, the State Protection and Advocacy 
System shall submit to AIDD, an Annual Statement of Goals and 
Priorities, (SGP), for the coming fiscal year as required under section 
143(a)(2)(C) of the Act (42 U.S.C. 15043). In order to be accepted by 
AIDD, an SGP must meet the requirements of section 143 of the Act.
    (1) The SGP is a description and explanation of the system's goals 
and priorities for its activities, selection criteria for its 
individual advocacy and training activities, and the outcomes it 
strives to accomplish. The SGP is developed through data driven 
strategic planning. If changes are made to the goals or the indicators 
of progress established for a year, the SGP must be amended to reflect 
those changes. The SGP must include a description of how the Protection 
and Advocacy System operates, and where applicable, how it coordinates 
the State Protection and Advocacy program for individuals with 
developmental disabilities with other Protection and Advocacy programs 
administered by the State Protection and Advocacy System. This 
description must include the System's processes for intake, internal 
and external referrals, and streamlining of advocacy services. If the 
System will be requesting or requiring fees or donations from clients 
as part of the intake process, the SGP must state that the system will 
be doing so. The description also must address collaboration, the 
reduction of duplication and overlap of services, the sharing of 
information on service needs, and the development of statements of 
goals and priorities for the various advocacy programs.
    (2) Priorities as established through the SGP serve as the basis 
for the Protection and Advocacy System to determine which cases are 
selected in a given fiscal year. Protection and Advocacy Systems have 
the authority to turn down a request for assistance when it is outside 
the scope of the SGP, but they must inform individuals when this is the 
basis for turning them down.
    (d) Each fiscal year, the Protection and Advocacy System shall:
    (1) Obtain formal public input on its Statement of Goals and 
Priorities;
    (2) At a minimum, provide for a broad distribution of the proposed 
Statement of Goals and Priorities for the next fiscal year in a manner 
accessible to individuals with developmental disabilities and their 
representatives,

[[Page 44816]]

allowing at least 45 days from the date of distribution for comment;
    (3) Provide to the State Councils on Developmental Disabilities and 
the University Centers for Excellence in Developmental Disabilities 
Education, Research and Service a copy of the proposed Statement of 
Goals and Priorities for comment concurrently with the public notice;
    (4) Incorporate or address any comments received through public 
input and any input received from the State Councils on Developmental 
Disabilities and the University Centers for Excellence in Developmental 
Disabilities Education, Research and Service in the final Statement 
submitted; and
    (5) Address how the Protection and Advocacy System, State Councils 
on Developmental Disabilities, and University Centers for Excellence in 
Developmental Disabilities Education Research and Service will 
collaborate with each other and with other public and private entities.


Sec.  1386.23  Non-allowable costs for the State Protection and 
Advocacy System.

    (a) Federal financial participation is not allowable for:
    (1) Costs incurred for activities on behalf of individuals with 
developmental disabilities to solve problems not directly related to 
their disabilities and which are faced by the general populace. Such 
activities include but are not limited to: Preparation of wills, 
divorce decrees, and real estate proceedings. Allowable costs in such 
cases would include the Protection and Advocacy System providing 
disability-related technical assistance information and referral to 
appropriate programs and services; and
    (2) Costs not allowed under other applicable statutes, Departmental 
regulations and issuances of the Office of Management and Budget.
    (b) Attorneys' fees are considered program income pursuant to 45 
CFR part 75 and must be added to the funds committed to the program and 
used to further the objectives of the program. This requirement shall 
apply to all attorneys' fees, including those earned by contractors and 
those received after the project period in which they were earned.


Sec.  1386.24  Allowable litigation costs.

    Allotments may be used to pay the otherwise allowable costs 
incurred by a Protection and Advocacy System in bringing lawsuits in 
its own right to redress incidents of abuse or neglect, discrimination 
and other rights violations impacting the ability of individuals with 
developmental disabilities to obtain access to records and when it 
appears on behalf of named plaintiffs or a class of plaintiff for such 
purposes.

Subpart C--Access to Records, Service Providers, and Individuals 
With Developmental Disabilities


Sec.  1386.25  Access to records.

    (a) Pursuant to sections 143(a)(2), (A)(i), (B), (I), and (J) of 
the Act, and subject to the provisions of this section, a Protection 
and Advocacy (P&A) System, and all of its authorized agents, shall have 
access to the records of individuals with developmental disabilities 
under the following circumstances:
    (1) If authorized by an individual who is a client of the system, 
or who has requested assistance from the system, or by such 
individual's legal guardian, conservator or other legal representative.
    (2) In the case of an individual to whom all of the following 
conditions apply:
    (i) The individual, due to his or her mental or physical condition, 
is unable to authorize the system to have access;
    (ii) The individual does not have a legal guardian, conservator or 
other legal representative, or the individual's guardian is the State 
(or one of its political subdivisions); and
    (iii) The individual has been the subject of a complaint to the P&A 
system, or the P&A system has probable cause (which can be the result 
of monitoring or other activities including media reports and newspaper 
articles) to believe that such individual has been subject to abuse and 
neglect.
    (3) In the case of an individual, who has a legal guardian, 
conservator, or other legal representative, about whom a complaint has 
been received by the system or, as a result of monitoring or other 
activities, the system has determined that there is probable cause to 
believe that the individual with developmental disability has been 
subject to abuse or neglect, whenever the following conditions exist:
    (i) The P&A system has made a good faith effort to contact the 
legal guardian, conservator, or other legal representative upon prompt 
receipt (within the timelines set forth in paragraph (c) of this 
section) of the contact information (which is required to include but 
not limited to name, address, telephone numbers, and email address) of 
the legal guardian, conservator, or other legal representative;
    (ii) The system has offered assistance to the legal guardian, 
conservator, or other legal representative to resolve the situation; 
and
    (iii) The legal guardian, conservator, or other legal 
representative has failed or refused to provide consent on behalf of 
the individual.
    (4) If the P&A determines there is probable cause to believe that 
the health or safety of an individual is in serious and immediate 
jeopardy, no consent from another party is needed.
    (5) In the case of death, no consent from another party is needed. 
Probable cause to believe that the death of an individual with a 
developmental disability resulted from abuse or neglect or any other 
specific cause is not required for the P&A system to obtain access to 
the records. Any individual who dies in a situation in which services, 
supports, or other assistance are, have been, or may customarily be 
provided to individuals with developmental disabilities shall, for the 
purposes of the P&A system obtaining access to the individual's 
records, be deemed an ``individual with a developmental disability.''
    (b) Individual records to which P&A systems must have access under 
section 143(a)(2), (A)(i), (B), (I), and (J) of the Act (whether 
written or in another medium, draft, preliminary or final, including 
handwritten notes, electronic files, photographs or video or audiotape 
records) shall include, but shall not be limited to:
    (1) Individual records prepared or received in the course of 
providing intake, assessment, evaluation, education, training and other 
services; supports or assistance, including medical records, financial 
records, and monitoring and other reports prepared or received by a 
service provider. This includes records stored or maintained at sites 
other than that of the service provider, as well as records that were 
not prepared by the service provider, but received by the service 
provider from other service providers.
    (2) Reports prepared by a Federal, State or local governmental 
agency, or a private organization charged with investigating incidents 
of abuse or neglect, injury or death. The organizations whose reports 
are subject to this requirement include, but are not limited to, 
agencies in the foster care systems, developmental disabilities 
systems, prison and jail systems, public and private educational 
systems, emergency shelters, criminal and civil law enforcement 
agencies such as police departments, agencies overseeing juvenile 
justice facilities, juvenile detention facilities, all pre- and post-

[[Page 44817]]

adjudication juvenile facilities, State and Federal licensing and 
certification agencies, and private accreditation organizations such as 
the Joint Commission on the Accreditation of Health Care Organizations 
or by medical care evaluation or peer review committees, regardless of 
whether they are protected by federal or state law. The reports subject 
to this requirement describe any or all of the following:
    (i) The incidents of abuse, neglect, injury, and/or death;
    (ii) The steps taken to investigate the incidents;
    (iii) Reports and records, including personnel records, prepared or 
maintained by the service provider in connection with such reports of 
incidents; or,
    (iv) Supporting information that was relied upon in creating a 
report including all information and records that describe persons who 
were interviewed, physical and documentary evidence that was reviewed, 
and the related investigative findings;
    (3) Discharge planning records; and
    (4) Information in professional, performance, building or other 
safety standards, and demographic and statistical information relating 
to a service provider.
    (c) The time period in which the P&A system must be given access to 
records of individuals with developmental disabilities under sections 
143(a)(2)(A)(i), (B), (I), and (J) of the Act, and subject to the 
provisions of this section, varies depending on the following 
circumstances:
    (1) If the P&A system determines that there is probable cause to 
believe that the health or safety of the individual with a 
developmental disability is in serious and immediate jeopardy, or in 
any case of the death of an individual with a developmental disability, 
access to the records of the individual with a developmental 
disability, as described in paragraph (b) of this section shall be 
provided (including the right to inspect and copy records as specified 
in paragraph (d) of this section) to the P&A system within 24 hours of 
receipt of the P&A system's written request for the records without the 
consent of another party.
    (2) In all other cases, access to records of individuals with 
developmental disabilities shall be provided to the P&A system within 
three business days after the receipt of such a written request from 
the P&A system.
    (d) A P&A shall be permitted to inspect and copy information and 
records, subject to a reasonable charge to offset duplicating costs. If 
the service provider or its agents copy the records for the P&A system, 
it may not charge the P&A system an amount that would exceed the amount 
customarily charged other non-profit or State government agencies for 
reproducing documents. At its option, the P&A may make written notes 
when inspecting information and records, and may use its own 
photocopying equipment to obtain copies. If a party other than the P&A 
system performs the photocopying or other reproduction of records, it 
shall provide the photocopies or reproductions to the P&A system within 
the time frames specified in paragraph (c) of this section. In 
addition, where records are kept or maintained electronically they 
shall be provided to the P&A electronically.
    (e) The Health Insurance Portability and Accountability Act Privacy 
Rule permits the disclosure of protected health information (PHI) 
without the authorization of the individual to a P&A system to the 
extent that such disclosure is required by law and the disclosure 
complies with the requirements of that law.
    (f) Educational agencies, including public, private, and charter 
schools, as well as, public and private residential and non-residential 
schools, must provide a P&A with the name of and contact information 
for the parent or guardian of a student for whom the P&A has probable 
cause to obtain records under the DD Act.


Sec.  1386.26  Denial or delay of access to records.

    If a P&A system's access is denied or delayed beyond the deadlines 
specified in Sec.  1386.25, the P&A system shall be provided, within 
one business day after the expiration of such deadline, with a written 
statement of reasons for the denial or delay. In the case of a denial 
for alleged lack of authorization, the name, address and telephone 
number of individuals with developmental disabilities and legal 
guardians, conservators, or other legal representative will be included 
in the aforementioned response. All of the above information shall be 
provided whether or not the P&A has probable cause to suspect abuse or 
neglect, or has received a complaint.


Sec.  1386.27  Access to service providers and individuals with 
developmental disabilities.

    (a) Access to service providers and individuals with developmental 
disabilities shall be extended to all authorized agents of a P&A 
system.
    (b) The P&A system shall have reasonable unaccompanied access to 
individuals with developmental disabilities at all times necessary to 
conduct a full investigation of an incident of abuse or neglect.
    (1) Such access shall be afforded upon request, by the P&A system 
when:
    (i) An incident is reported or a complaint is made to the P&A 
system;
    (ii) The P&A system determines that there is probable cause to 
believe that an incident has or may have occurred; or
    (iii) The P&A system determines that there is or may be imminent 
danger of serious abuse or neglect of an individual with a 
developmental disability.
    (2) A P&A system shall have reasonable unaccompanied access to 
public and private service providers, programs in the State, and to all 
areas of the service provider's premises that are used by individuals 
with developmental disabilities or are accessible to them. Such access 
shall be provided without advance notice and made available immediately 
upon request. This authority shall include the opportunity to interview 
any individual with developmental disability, employee, or other 
persons, including the person thought to be the victim of such abuse, 
who might be reasonably believed by the system to have knowledge of the 
incident under investigation. The P&A may not be required to provide 
the name or other identifying information regarding the individual with 
developmental disability or staff with whom it plans to meet; neither 
may the P&A be required to justify or explain its interaction with such 
persons.
    (c) In addition to the access required under paragraph (b) of this 
section, a P&A system shall have reasonable unaccompanied access to 
service providers for routine circumstances. This includes areas which 
are used by individuals with developmental disabilities and are 
accessible to individuals with developmental disabilities at reasonable 
times, which at a minimum shall include normal working hours and 
visiting hours. A P&A also shall be permitted to attend treatment 
planning meetings concerning individuals with developmental 
disabilities with the consent of the individual or his or her guardian, 
conservator or other legal representative, except that no consent is 
required if the individual, due to his or mental or physical condition, 
is unable to authorize the system to have access to a treatment 
planning meeting; and the individual does not have a legal guardian, 
conservator or other legal representative, or the individual's guardian 
is the State (or one of its political subdivisions).
    (1) Access to service providers shall be afforded immediately upon 
an oral or

[[Page 44818]]

written request by the P&A system. Except where complying with the 
P&A's request would interfere with treatment or therapy to be provided, 
service providers shall provide access to individuals for the purpose 
covered by this paragraph. If the P&As access to an individual must be 
delayed beyond 24 hours to allow for the provision of treatment or 
therapy, the P&A shall receive access as soon as possible thereafter. 
In cases where a service provider denies a P&A access to an individual 
with a developmental disability on the grounds that such access would 
interfere with the individual's treatment or therapy, the service 
provider shall, no later than 24 hours of the P&A's request, provide 
the P&A with a written statement from a physician stating that P&A 
access to the individual will interfere with the individual's treatment 
and therapy, and the time and circumstances under which the P&A can 
interview the individual. If the physician states that the individual 
cannot be interviewed in the next 24 hours, the P&A and the service 
provider shall engage in a good faith interactive process to determine 
when and under what circumstances the P&A can interview the individual. 
If the P&A and the service provider are unable to agree upon the time 
and circumstance, they shall select a mutually agreeable independent 
physician who will determine when and under what circumstances the 
individual may be interviewed. The expense of the independent 
physician's services shall be paid for by the service provider. 
Individuals with developmental disabilities subject to the requirements 
in this paragraph include adults and minors who have legal guardians or 
conservators.
    (2) P&A activities shall be conducted so as to minimize 
interference with service provider programs, respect individuals with 
developmental disabilities' privacy interests, and honor a recipient's 
request to terminate an interview. This access is for the purpose of:
    (i) Providing information, training, and referral for programs 
addressing the needs of individuals with developmental disabilities, 
information and training about individual rights, and the protection 
and advocacy services available from the P&A system, including the 
name, address, and telephone number of the P&A system. P&As shall be 
permitted to post, in an area which individuals with developmental 
disabilities receive services, a poster which states the protection and 
advocacy services available from the P&A system, including the name, 
address and telephone number of the P&A system.
    (ii) Monitoring compliance with respect to the rights and safety of 
individuals with developmental disabilities; and
    (iii) Access including, but is not limited to inspecting, viewing, 
photographing, and video recording all areas of a service provider's 
premises or under the service provider's supervision or control which 
are used by individuals with developmental disabilities or are 
accessible to them. This authority does not include photographing or 
video recording individuals with developmental disabilities unless they 
consent or State laws allow such activities.
    (d) Unaccompanied access to individuals with developmental 
disabilities including, but not limited to, the opportunity to meet and 
communicate privately with individuals regularly, both formally and 
informally, by telephone, mail and in person. This authority shall also 
include the opportunity to meet, communicate with, or interview any 
individual with a developmental disability, including a person thought 
to be the subject of abuse, who might be reasonably believed by the P&A 
system to have knowledge of an incident under investigation or non-
compliance with respect to the rights and safety of individuals with 
developmental disabilities. Except as otherwise required by law the P&A 
shall not be required to provide the name or other identifying 
information regarding the individual with a disability with whom it 
plans to meet; neither may the P&A be required to justify or explain 
its interaction with such persons.


Sec.  1386.28  Confidentiality of State Protection and Advocacy System 
records.

    (a) A P&A shall, at minimum, comply with the confidentiality 
provisions of all applicable Federal and State laws.
    (b) Records maintained by the P&A system are the property of the 
P&A system which must protect them from loss, damage, tampering, 
unauthorized use, or tampering. The P&A system must:
    (1) Except as provided elsewhere in this section, keep confidential 
all records and information, including information contained in any 
automated electronic database pertaining to:
    (i) Clients;
    (ii) Individuals who have been provided general information or 
technical assistance on a particular matter;
    (iii) The identity of individuals who report incidents of abuse or 
neglect, or who furnish information that forms the basis for a 
determination that probable cause exists; and
    (iv) Names of individuals who have received services, supports or 
other assistance, and who provided information to the P&A for the 
record.
    (v) Peer review records.
    (2) Have written policies governing the access, storage, 
duplication and release of information from client records, including 
the release of information peer review records.
    (3) Obtain written consent from the client, or from his or her 
legal representative; individuals who have been provided general 
information or technical assistance on a particular matter; and 
individuals who furnish reports or information that form the basis for 
a determination of probable cause, before releasing information 
concerning such individuals to those not otherwise authorized to 
receive it.
    (c) Nothing in this subpart shall prevent the P&A system from 
issuing a public report of the results of an investigation which 
maintains the confidentiality of the individuals listed in paragraph 
(a)(1) of this section, or reporting the results of an investigation in 
a manner which maintains the confidentiality of such individuals, to 
responsible investigative or enforcement agencies should an 
investigation reveal information concerning the service provider, its 
staff, or employees warranting possible sanctions or corrective action. 
This information may be reported to agencies responsible for service 
provider licensing or accreditation, employee discipline, employee 
licensing or certification, or criminal investigation or prosecution.
    (d) Notwithstanding the confidentiality requirements of this 
section, the P&A may make a report to investigative or enforcement 
agencies, as described in paragraph (b) of this section, which reveals 
the identity of an individual with developmental disability, and 
information relating to his or her status or treatment:
    (1) When the system has received a complaint that the individual 
has been or may be subject to abuse and neglect, or has probable cause 
(which can be the result of monitoring or other activities including 
media reports and newspaper articles) to believe that such individual 
has been or may be subject to abuse or neglect;
    (2) When the system determines that there is probable cause to 
believe the health or safety of the individual is in serious and 
immediate jeopardy; or
    (3) In any case of the death of an individual whom the system 
believes

[[Page 44819]]

may have had a developmental disability.

Subpart D--Federal Assistance to State Councils on Developmental 
Disabilities


Sec.  1386.30  State plan requirements.

    (a) In order to receive Federal funding under this subpart, each 
State Developmental Disabilities Council must prepare and submit a 
State plan which meets the requirements of sections 124 and 125 of the 
Act (42 U.S.C. 15024 and 15025), and the applicable regulation. 
Development of the State plan and its periodic updating are the 
responsibility of the State Council on Developmental Disabilities. As 
provided in section 124(d) of the Act, the Council shall provide 
opportunities for public input and review (in accessible formats and 
plain language requirements), and will consult with the Designated 
State Agency to determine that the plan is consistent with applicable 
State laws, and obtain appropriate State plan assurances.
    (b) Failure to comply with the State plan requirements may result 
in the loss of Federal funds as described in section 127 of the Act (42 
U.S.C. 15027). The Secretary, or his or her designee, must provide 
reasonable notice and an opportunity for a hearing to the Council and 
the Designated State Agency before withholding any payments for 
planning, administration, and services.
    (c) The State plan must be submitted through the designated system 
by AIDD which is used to collect quantifiable and qualifiable 
information from the State Councils on Developmental Disabilities. The 
plan must:
    (1) Identify the agency or office in the State designated to 
support the Council in accordance with section 124(c)(2) and 125(d) of 
the Act. The Designated State Agency shall provide required assurances 
and support services requested from and negotiated with the Council.
    (2) For a year covered by the State plan, include for each area of 
emphasis under which a goal or goals have been identified, the measures 
of progress the Council has established or is required to apply in its 
progress in furthering the purpose of the Developmental Disabilities 
Assistance and Bill of Rights Act through advocacy, capacity building, 
and systemic change activities.
    (3) Provide for the establishment and maintenance of a Council in 
accordance with section 125 of the Act and describe the membership of 
such Council. The non-State agency members of the Council shall be 
subject to term limits to ensure rotating membership.
    (d) The State plan must be updated during the five-year period when 
substantive changes are contemplated in plan content, including changes 
under paragraph (c)(2) of this section.
    (e) The State plan may provide for funding projects to demonstrate 
new approaches to direct services that enhance the independence, 
productivity, and integration and inclusion into the community of 
individuals with developmental disabilities. Direct service 
demonstrations must be short-term, with a strategy to locate on-going 
funding from other sources after five years. Any State desiring to 
receive assistance beyond five years, under this subtitle, shall 
include in the State plan the information listed in paragraphs (e)(1) 
through (3) of this section, and AIDD reserves the right as the 
overseeing agency to deny the continuation of the demonstration project 
beyond five years.
    (1) The estimated period for the project's continued duration;
    (2) Justifications of why the project cannot be funded by the State 
or other sources and should receive continued funding; and
    (3) Provide data outcomes showing evidence of success.
    (f) The State plan may provide for funding of other demonstration 
projects or activities, including but not limited to outreach, 
training, technical assistance, supporting and educating communities, 
interagency collaboration and coordination, coordination with related 
councils, committees and programs, barrier elimination, systems design 
and redesign, coalition development and citizen participation, and 
informing policymakers. Demonstrations must be short-term, with a 
strategy to locate on-going funding from other sources after five 
years. Any State desiring to receive assistance beyond five years, 
under this subtitle, shall include in the State plan the information 
listed in paragraphs (f)(1) through (3) of this section, and AIDD 
reserves the right as the overseeing agency to deny the continuation of 
the demonstration project beyond five years.
    (1) The estimated period for the project's continued duration;
    (2) Justifications on why the project cannot be funded by the State 
or other resources and should receive continued funding; and
    (3) Provide data showing evidence of success.
    (g) The State plan must contain assurances that are consistent with 
section 124 of the Act (42 U.S.C. 15024).


Sec.  1386.31  State plan submittal and approval.

    (a) The Council shall issue a public notice about the availability 
of the proposed State plan or State plan amendment(s) for comment. The 
notice shall be published in formats accessible to individuals with 
developmental disabilities and the general public (e.g. public forums, 
Web sites, newspapers, and other current technologies) and shall 
provide a 45-day period for public review and comment. The Council 
shall take into account comments submitted within that period, and 
respond in the State plan to significant comments and suggestions. A 
summary of the Council's responses to State plan comments shall be 
submitted with the State plan and made available for public review. 
This document shall be made available in accessible formats upon 
request.
    (b) The State plan or amendment must be submitted to AIDD 45 days 
prior to the fiscal year for which it is applicable.
    (c) Failure to submit an approvable State plan or amendment prior 
to the Federal fiscal year for which it is applicable may result in the 
loss of Federal financial participation. Plans received during a 
quarter of the Federal fiscal year are approved back to the first day 
of the quarter so costs incurred from that point forward are 
approvable. Costs resulting from obligations incurred during the period 
of the fiscal year for which an approved plan is not in effect are not 
eligible for Federal financial participation.
    (d) The Secretary, or his or her designee, must approve any State 
plan or plan amendment provided it meets the requirements of the Act 
and this regulation.


Sec.  1386.32  Periodic reports: Federal assistance to State Councils 
on Developmental Disabilities.

    (a) The Governor or appropriate State financial officer must submit 
financial status reports (AIDD-02B) on the programs funded under this 
subpart semiannually.
    (b) By January 1 of each year, the State Council on Developmental 
Disabilities shall submit to AIDD, an Annual Program Performance Report 
through the system established by AIDD. In order to be accepted by 
AIDD, reports must meet the requirements of section 125(c)(7) of the 
Act (42 U.S.C. 15025) and the applicable regulations, include the 
information on its program necessary for the Secretary, or his or her 
designee, to comply with section 105(1),

[[Page 44820]]

(2), and (3) of the Act (42 U.S.C. 15005), and any other information 
requested by AIDD. Each Report shall contain information about the 
progress made by the Council in achieving its goals including:
    (1) A description of the extent to which the goals were achieved;
    (2) A description of the strategies that contributed to achieving 
the goals;
    (3) To the extent to which the goals were not achieved, a 
description of factors that impeded the achievement;
    (4) Separate information on the self-advocacy goal described in 
section 124(c)(4)(A)(ii) of the Act (42 U.S.C. 15024);
    (5) As appropriate, an update on the results of the comprehensive 
review and analysis of the extent to which services, supports, and 
other assistance are available to individuals with developmental 
disabilities and their families, including the extent of unmet needs 
for services, supports, and other assistance for those individuals and 
their families, in the State as required in section 124(c)(3) of the 
Act (42 U.S.C. 15024);
    (6) Information on individual satisfaction with Council supported 
or conducted activities;
    (7) A description of the adequacy of health care and other 
services, supports, and assistance that individuals with developmental 
disabilities in Intermediate Care Facilities for Individuals with 
Intellectual Disabilities (ICF/IID) receive;
    (8) To the extent available, a description of the adequacy of 
health care and other services, supports, and assistance received by 
individuals with developmental disabilities served through home and 
community-based waivers (authorized under section 1915(c) of the Social 
Security Act);
    (9) An accounting of the funds paid to the State awarded under the 
DD Council program;
    (10) A description of resources made available to carry out 
activities to assist individuals with developmental disabilities 
directly attributable to Council actions;
    (11) A description of resources made available for such activities 
that are undertaken by the Council in collaboration with other 
entities; and
    (12) A description of the method by which the Council will widely 
disseminate the annual report to affected constituencies and the 
general public and will assure that the report is available in 
accessible formats.
    (c) Each Council must include in its Annual Program Performance 
Report information on its achievement of the measures of progress.


Sec.  1386.33  Protection of employees interests.

    (a) Based on section 124(c)(5)(J) of the Act (42 U.S.C. 
15024(c)(5)(J)), the State plan must assure fair and equitable 
arrangements to protect the interest of all institutional employees 
affected by actions under the plan to provide community living 
activities. The State must inform employees of the State's decision to 
provide for community living activities. Specific arrangements for the 
protection of affected employees must be developed through negotiations 
between the appropriate State authorities and employees or their 
representatives.
    (b) Fair and equitable arrangements must include procedures that 
provide for the impartial resolution of disputes between the State and 
an employee concerning the interpretation, application, and enforcement 
of protection arrangements. To the maximum extent practicable, these 
arrangements must include provisions for:
    (1) The preservation of rights and benefits;
    (2) Guaranteeing employment to employees affected by action under 
the plan to provide alternative community living arrangements; and
    (3) Employee training and retraining programs.


Sec.  1386.34  Designated State Agency.

    (a) The Designated State Agency shall provide the required 
assurances and other support services as requested and negotiated by 
the Council. These include:
    (1) Provision of financial reporting and other services as provided 
under section 125(d)(3)(D) of the Act; and
    (2) Information and direction, as appropriate, on procedures on the 
hiring, supervision, and assignment of staff in accordance with State 
law.
    (b) If the State Council on Developmental Disabilities requests a 
review by the Governor (or State legislature, if applicable) of the 
Designated State Agency, the Council must provide documentation of the 
reason for change, and recommend a new preferred Designated State 
Agency by the Governor (or State legislature, if applicable).
    (c) After the review is completed by the Governor (or State 
legislature, if applicable), and if no change is made, a majority of 
the non-State agency members of the Council may appeal to the 
Secretary, or his or her designee, for a review of the Designated State 
Agency if the Council's independence as an advocate is not assured 
because of the actions or inactions of the Designated State agency.
    (d) The following steps apply to the appeal of the Governor's (or 
State legislature, if applicable) designation of the Designated State 
Agency.
    (1) Prior to an appeal to the Secretary, or his or her designee, 
the State Council on Developmental Disabilities, must give a 30 day 
written notice, by certified mail, to the Governor (or State 
legislature, if applicable) of the majority of non-State members' 
intention to appeal the designation of the Designated State Agency.
    (2) The appeal must clearly identify the grounds for the claim that 
the Council's independence as an advocate is not assured because of the 
action or inactions of the Designated State Agency.
    (3) Upon receipt of the appeal from the State Council on 
Developmental Disabilities, the Secretary, or his or her designee, will 
notify the State Council on Developmental Disabilities and the Governor 
(or State legislature, if applicable), by certified mail, that the 
appeal has been received and will be acted upon within 60 days. The 
Governor (or State legislature, if applicable) shall within 10 working 
days from the receipt of the Secretary's, or his or her designated 
person's, notification provide written comments to the Secretary, or 
his or her designee, (with a copy sent by registered or certified mail 
to the Council) on the claims in the Council's appeal. Either party may 
request, and the Secretary, or his or her designee, may grant, an 
opportunity for an informal meeting with the Secretary, or his or her 
designee, at which representatives from both parties will present their 
views on the issues in the appeal. The meeting will be held within 20 
working days of the submission of written comments by the Governor (or 
State legislature, if applicable). The Secretary, or his or her 
designee, will promptly notify the parties of the date and place of the 
meeting.
    (4) The Secretary, or his or her designee, will review the issue(s) 
and provide a final written decision within 60 days following receipt 
of the appeal from the State Council on Developmental Disabilities. If 
the determination is made that the Designated State Agency should be 
redesignated, the Governor (or State legislature, if applicable) must 
provide written assurance of compliance within 45 days from receipt of 
the decision.
    (5) Anytime during this appeals process the State Council on 
Developmental Disabilities may withdraw such request if resolution has

[[Page 44821]]

been reached with the Governor (or State legislature, if applicable) on 
the Designated State Agency. The Governor (or State legislature, if 
applicable) must notify the Secretary, or his or her designee, in 
writing of such a decision.
    (e) The Designated State Agency may authorize the Council to 
contract with State agencies other than the Designated State Agency to 
perform functions of the Designated State Agency.


Sec.  1386.35  Allowable and non-allowable costs for Federal assistance 
to State Councils on Developmental Disabilities.

    (a) Under this subpart, Federal funding is available for costs 
resulting from obligations incurred under the approved State plan for 
the necessary expenses of administering the plan, which may include the 
establishment and maintenance of the State Council, and all programs, 
projects, and activities carried out under the State plan.
    (b) Expenditures which are not allowable for Federal financial 
participation are:
    (1) Costs incurred by institutions or other residential or non-
residential programs which do not comply with the Congressional 
findings with respect to the rights of individuals with developmental 
disabilities in section 109 of the Act (42 U.S.C. 15009).
    (2) Costs incurred for activities not provided for in the approved 
State plan; and
    (3) Costs not allowed under other applicable statutes, Departmental 
regulations, or issuances of the Office of Management and Budget.
    (c) Expenditure of funds that supplant State and local funds are 
not allowed. Supplanting occurs when State or local funds previously 
used to fund activities under the State plan are replaced by Federal 
funds for the same purpose. However, supplanting does not occur if 
State or local funds are replaced with Federal funds for a particular 
activity or purpose in the approved State plan if the replaced State or 
local funds are then used for other activities or purposes in the 
approved State plan.
    (d) For purposes of determining aggregate minimum State share of 
expenditures, there are three categories of expenditures:
    (1) Expenditures for projects or activities undertaken directly by 
the Council and Council staff to implement State plan activities, as 
described in section 126(a)(3) of the Act, require no non-Federal 
aggregate of the necessary costs of such activities.
    (2) Expenditures for projects whose activities or products target 
individuals with developmental disabilities who live in urban or rural 
poverty areas, as determined by the Secretary, or his or her designee, 
but not carried out directly by the Council and Council staff, as 
described in section 126(a)(2) of the Act, shall have non-Federal 
funding of at least 10 percent in the aggregate of the necessary costs 
of such projects.
    (3) All other projects not directly carried out by the Council and 
Council staff shall have non-Federal funding of at least 25 percent in 
the aggregate of the necessary costs of such projects.
    (e) The Council may vary the non-Federal funding required on a 
project-by-project, activity-by-activity basis (both poverty and non-
poverty activities), including requiring no non-Federal funding from 
particular projects or activities as the Council deems appropriate so 
long as the requirement for aggregate non-Federal funding is met.


Sec.  1386.36  Final disapproval of the State plan or plan amendments.

    The Department will disapprove any State plan or plan amendment 
only after the following procedures have been complied with:
    (a) The State plan has been submitted to AIDD for review. If after 
contacting the State on issues with the plan with no resolution, a 
detailed written analysis of the reasons for recommending disapproval 
shall be prepared and provided to the State Council and State 
Designated Agency.
    (b) Once the Secretary, or his or her designee, has determined that 
the State plan, in whole or in part, is not approvable, notice of this 
determination shall be sent to the State with appropriate references to 
the records, provisions of the statute and regulations, and all 
relevant interpretations of applicable laws and regulations. The 
notification of the decision must inform the State of its right to 
appeal in accordance with subpart E of this part.
    (c) The Secretary's, or his or her designee's, decision has been 
forwarded to the State Council and its Designated State Agency by 
certified mail with a return receipt requested.
    (d) A State has filed its request for a hearing with the Secretary, 
or his or her designee, within 21 days of the receipt of the decision. 
The request for a hearing must be sent by certified mail to the 
Secretary, or his or her designee. The date of mailing the request is 
considered the date of filing if it is supported by independent 
evidence of mailing. Otherwise the date of receipt shall be considered 
the date of filing.

Subpart E--Practice and Procedure for Hearings Pertaining to 
States' Conformity and Compliance With Developmental Disabilities 
State Plans, Reports, and Federal Requirements

General


Sec.  1386.80  Definitions.

    For purposes of this subpart:
    Payment or allotment. The term ``payment'' or ``allotment'' means 
an amount provided under part B or C of the Developmental Disabilities 
Assistance and Bill or Rights Act of 2000. This term includes Federal 
funds provided under the Act irrespective of whether the State must 
match the Federal portion of the expenditure. This term shall include 
funds previously covered by the terms ``Federal financial 
participation,'' ``the State's total allotment,'' ``further payments,'' 
``payments,'' ``allotment'' and ``Federal funds.''
    Presiding officer. The term ``presiding officer'' means anyone 
designated by the Secretary to conduct any hearing held under this 
subpart. The term includes the Secretary, or the Secretary's designee, 
if the Secretary or his or her designee presides over the hearing. For 
purposes of this subpart the Secretary's ``designee'' refers to a 
person, such as the Administrator of ACL, who has been delegated broad 
authority to carry out all or some of the authorizing statute. The term 
designee does not refer to a presiding officer designated only to 
conduct a particular hearing or hearings.


Sec.  1386.81  Scope of rules.

    (a) The rules of procedures in this subpart govern the practice for 
hearings afforded by the Department to States pursuant to sections 124, 
127, and 143 of the Act. (42 U.S.C. 15024, 15027 and 15043).
    (b) Nothing in this part is intended to preclude or limit 
negotiations between the Department and the State, whether before, 
during, or after the hearing to resolve the issues that are, or 
otherwise would be, considered at the hearing. Negotiation and 
resolution of issues are not part of the hearing, and are not governed 
by the rules in this subpart, except as otherwise provided in this 
subpart.


Sec.  1386.82  Records to the public.

    All pleadings, correspondence, exhibits, transcripts of testimony, 
exceptions, briefs, decisions, and other documents filed in the docket 
in any proceeding are subject to public inspection.

[[Page 44822]]

Sec.  1386.83  Use of gender and number.

    As used in this subpart, words importing the singular number may 
extend and be applied to several persons or things, and vice versa. 
Words importing either gender may be applied to the other gender or to 
organizations.


Sec.  1386.84  Suspension of rules.

    Upon notice to all parties, the Secretary or the Secretary's 
designee may modify or waive any rule in this subpart, unless otherwise 
expressly provided, upon determination that no party will be unduly 
prejudiced and justice will be served.


Sec.  1386.85  Filing and service of papers.

    (a) All papers in the proceedings must be filed with the designated 
individual in an original and two copies. Only the originals of 
exhibits and transcripts of testimony need be filed.
    (b) Copies of papers in the proceedings must be served on all 
parties by personal delivery or by mail. Service on the party's 
designated representative is deemed service upon the party.

Preliminary Matters--Notice and Parties


Sec.  1386.90  Notice of hearing or opportunity for hearing.

    Proceedings are commenced by mailing a notice of hearing or 
opportunity for hearing from the Secretary, or his or her designee, to 
the State Council on Developmental Disabilities and the Designated 
State Agency, or to the State Protection and Advocacy System or 
designating official. The notice must state the time and place for the 
hearing and the issues that will be considered. The notice must be 
published in the Federal Register.


Sec.  1386.91  Time of hearing.

    The hearing must be scheduled not less than 30 days, nor more than 
60 days after the notice of the hearing is mailed to the State.


Sec.  1386.92  Place.

    The hearing must be held on a date and at a time and place 
determined by the Secretary, or his or her designee with due regard for 
convenience, and necessity of the parties or their representatives. The 
site of the hearing shall be accessible to individuals with 
disabilities.


Sec.  1386.93  Issues at hearing.

    (a) Prior to a hearing, the Secretary or his or her designee may 
notify the State in writing of additional issues which will be 
considered at the hearing. That notice must be published in the Federal 
Register. If that notice is mailed to the State less than 20 days 
before the date of the hearing, the State or any other party, at its 
request, must be granted a postponement of the hearing to a date 20 
days after the notice was mailed or such later date as may be agreed to 
by the Secretary or his or her designee.
    (b) If any issue is resolved in whole or in part, but new or 
modified issues are presented, the hearing must proceed on the new or 
modified issues.
    (c)(1) If at any time, whether prior to, during, or after the 
hearing, the Secretary, or his or her designee, finds that the State 
has come into compliance with Federal requirements on any issue in 
whole or in part, he or she must remove the issue from the proceedings 
in whole or in part as may be appropriate. If all issues are removed 
the Secretary, or his or her designee, must terminate the hearing.
    (2) Prior to the removal of an issue, in whole or in part, from a 
hearing involving issues relating to the conformity with Federal 
requirements under part B of the Act, of the State plan or the 
activities of the State Protection and Advocacy System, the Secretary, 
or his or her designee, must provide all parties other than the 
Department and the State (see Sec.  1386.94(b)) with the statement of 
his or her intention to remove an issue from the hearing and the 
reasons for that decision. A copy of the proposed State plan provision 
or document explaining changes in the activities of the State's 
Protection and Advocacy System on which the State and the Secretary, or 
his or her designee, have settled must be sent to the parties. The 
parties must have an opportunity to submit in writing within 15 days 
their views as to, or any information bearing upon, the merits of the 
proposed provision and the merits of the reasons for removing the issue 
from the hearing.
    (d) In hearings involving questions of noncompliance of a State's 
operation of its program under part B of the Act, with the State plan 
or with Federal requirements, or compliance of the State Protection and 
Advocacy System with Federal requirements, the same procedure set forth 
in paragraph (c)(2) of this section must be followed with respect to 
any report or evidence resulting in a conclusion by the Secretary, or 
his or her designee, that a State has achieved compliance.
    (e) The issues considered at the hearing must be limited to those 
issues of which the State is notified as provided in Sec.  1386.90 and 
paragraph (a) of this section, and new or modified issues described in 
paragraph (b) of this section, and may not include issues or parts of 
issues removed from the proceedings pursuant to paragraph (c) of this 
section.


Sec.  1386.94  Request to participate in hearing.

    (a) The Department, the State, the State Council on Developmental 
Disabilities, the Designated State Agency, and the State Protection and 
Advocacy System, as appropriate, are parties to the hearing without 
making a specific request to participate.
    (b)(1) Other individuals or groups may be recognized as parties if 
the issues to be considered at the hearing have caused them injury and 
their interests are relevant to the issues in the hearing.
    (2) Any individual or group wishing to participate as a party must 
file a petition with the designated individual within 15 days after 
notice of the hearing has been published in the Federal Register, and 
must serve a copy on each party of record at that time in accordance 
with Sec.  1386.85(b). The petition must concisely state:
    (i) Petitioner's interest in the proceeding;
    (ii) Who will appear for petitioner;
    (iii) The issues the petitioner wishes to address; and
    (iv) Whether the petitioner intends to present witnesses.
    (c)(1) Any interested person or organization wishing to participate 
as amicus curiae must file a petition with the designated individual 
before the commencement of the hearing. The petition must concisely 
state:
    (i) The petitioner's interest in the hearing;
    (ii) Who will represent the petitioner; and
    (iii) The issues on which the petitioner intends to present 
argument.
    (2) The presiding officer may grant the petition if he or she finds 
that the petitioner has a legitimate interest in the proceedings and 
that such participation will not unduly delay the outcome and may 
contribute materially to the proper disposition of the issues.
    (3) An amicus curiae may present a brief oral statement at the 
hearing at the point in the proceedings specified by the presiding 
officer. It may submit a written statement of position to the presiding 
officer prior to the beginning of a hearing and must serve a copy on 
each party. It also may submit a brief or written statement at such 
time as the parties submit briefs and must serve a copy on each party.

[[Page 44823]]

Hearing Procedures


Sec.  1386.100  Who presides.

    (a) The presiding officer at a hearing must be the Secretary, his 
or her designee, or another person specifically designated for a 
particular hearing or hearings.
    (b) The designation of a presiding officer must be in writing. A 
copy of the designation must be served on all parties and amici curiae.


Sec.  1386.101  Authority of presiding officer.

    (a) The presiding officer has the duty to conduct a fair hearing, 
avoid delay, maintain order, and make a record of the proceedings. The 
presiding officer has all powers necessary to accomplish these ends, 
including, but not limited to, the power to:
    (1) Change the date, time, and place of the hearing, upon notice to 
the parties. This includes the power to continue the hearing in whole 
or in part;
    (2) Hold conferences to settle or simplify the issues in a 
proceeding, or to consider other matters that may aid in the 
expeditious disposition of the proceedings;
    (3) Regulate participation of parties and amici curiae and require 
parties and amici curiae to state their positions with respect to the 
issues in the proceeding;
    (4) Administer oaths and affirmations;
    (5) Rule on motions and other procedural items on matters pending 
before him or her, including issuance of protective orders or other 
relief to a party against whom discovery is sought;
    (6) Regulate the course of the hearing and conduct of counsel 
therein;
    (7) Examine witnesses;
    (8) Receive, rule on, exclude, or limit evidence or discovery;
    (9) Fix the time for filing motions, petitions, briefs, or other 
items in matters pending before him or her;
    (10) If the presiding officer is the Secretary, or his or her 
designee, make a final decision;
    (11) If the presiding officer is a person other than the Secretary 
or his or her designee, the presiding officer shall certify the entire 
record, including recommended findings and proposed decision, to the 
Secretary or his or her designee; and
    (12) Take any action authorized by the rules in this subpart or 5 
U.S.C. 551-559.
    (b) The presiding officer does not have authority to compel the 
production of witnesses, papers, or other evidence by subpoena.
    (c) If the presiding officer is a person other than the Secretary 
or his or her designee, his or her authority is to render a recommended 
decision with respect to program requirements which are to be 
considered at the hearing. In case of any noncompliance, he or she 
shall recommend whether payments or allotments should be withheld with 
respect to the entire State plan or the activities of the State's 
Protection and Advocacy System, or whether the payments or allotments 
should be withheld only with respect to those parts of the program 
affected by such noncompliance.


Sec.  1386.102  Rights of parties.

    All parties may:
    (a) Appear by counsel, or other authorized representative, in all 
hearing proceedings;
    (b) Participate in any prehearing conference held by the presiding 
officer;
    (c) Agree to stipulations of facts which will be made a part of the 
record;
    (d) Make opening statements at the hearing;
    (e) Present relevant evidence on the issues at the hearing;
    (f) Present witnesses who then must be available for cross-
examination by all other parties;
    (g) Present oral arguments at the hearing; and
    (h) Submit written briefs, proposed findings of fact, and proposed 
conclusions of law, after the hearing.


Sec.  1386.103  Discovery.

    The Department and any party named in the notice issued pursuant to 
Sec.  1386.90 has the right to conduct discovery (including 
depositions) against opposing parties as provided by the Federal Rules 
of Civil Procedure. There is no fixed rule on priority of discovery. 
Upon written motion, the presiding officer must promptly rule upon any 
objection to discovery action. The presiding officer also has the power 
to grant a protective order or relief to any party against whom 
discovery is sought and to restrict or control discovery so as to 
prevent undue delay in the conduct of the hearing. Upon the failure of 
any party to make discovery, the presiding officer may issue any order 
and impose any sanction other than contempt orders authorized by Rule 
37 of the Federal Rules of Civil Procedure.


Sec.  1386.104  Evidentiary purpose.

    The hearing is directed to receiving factual evidence and expert 
opinion testimony related to the issues in the proceeding. Argument 
will not be received in evidence; rather, it must be presented in 
statements, memoranda, or briefs, as directed by the presiding officer. 
Brief opening statements, which shall be limited to a statement of the 
party's position and what it intends to prove, may be made at hearings.


Sec.  1386.105  Evidence.

    (a) Testimony. Testimony by witnesses at the hearing is given 
orally under oath or affirmation. Witnesses must be available at the 
hearing for cross-examination by all parties.
    (b) Stipulations and exhibits. Two or more parties may agree to 
stipulations of fact. Such stipulations, or any exhibit proposed by any 
party, must be exchanged at the prehearing conference or at a different 
time prior to the hearing if the presiding officer requires it.
    (c) Rules of evidence. Technical rules of evidence do not apply to 
hearings conducted pursuant to this subpart, but rules or principles 
designed to assure production of the most credible evidence available 
and to subject testimony to test by cross-examination are applied where 
reasonably necessary by the presiding officer. A witness may be cross-
examined on any matter material to the proceeding without regard to the 
scope of his or her direct examination. The presiding officer may 
exclude irrelevant, immaterial, or unduly repetitious evidence. All 
documents and other evidence offered or taken for the record is open to 
examination by the parties and opportunity must be given to refute 
facts and arguments advanced on either side of the issues.


Sec.  1386.106  Exclusion from hearing for misconduct.

    Disrespectful, disorderly, or rebellious language or contemptuous 
conduct, refusal to comply with directions, or continued use of 
dilatory tactics by any person at the hearing before a presiding 
officer shall constitute grounds for immediate exclusion of such person 
from the hearing by the presiding officer.


Sec.  1386.107  Unsponsored written material.

    Letters expressing views or urging action and other unsponsored 
written material regarding matters in issue in a hearing is placed in 
the correspondence section of the docket of the proceeding. This 
material is not deemed part of the evidence or record in the hearing.


Sec.  1386.108  Official transcript.

    The Department will designate the official reporter for all 
hearings. The official transcript of testimony taken, together with any 
stipulations, exhibits, briefs, or memoranda of law filed with them is 
filed with the Department. Transcripts of testimony in hearings may be 
obtained from the official reporter by the parties and the public at 
rates not to exceed the maximum rates

[[Page 44824]]

fixed by the contract between the Department and the reporter. Upon 
notice to all parties, the presiding officer may authorize corrections 
to the transcript which involve matters of substance. Transcripts must 
be taken by stenotype machine and not be voice recording devices, 
unless otherwise agreed by all of the parties and the presiding 
officer.


Sec.  1386.109  Record for decision.

    The transcript of testimony, exhibits, and all papers and requests 
filed in the proceedings, except the correspondence section of the 
docket, including rulings and any recommended or initial decision, 
constitute the exclusive record for decision.

Post-Hearing Procedures, Decisions


Sec.  1386.110  Post-hearing briefs.

    The presiding officer must fix the time for filing post-hearing 
briefs. This time may not exceed 30 days after termination of the 
hearing and receipt of the transcript. Briefs may contain proposed 
findings of fact and conclusions of law. If permitted, reply briefs may 
be filed no later than 15 days after filing of the post-hearing briefs.


Sec.  1386.111  Decisions following hearing.

    (a) If the Secretary, or his or her designee, is the presiding 
officer, he or she must issue a decision within 60 days after the time 
for submission of post-hearing briefs has expired.
    (b)(1) If the presiding officer is another person designated for a 
particular hearing or hearings, he or she must, within 30 days after 
the time for submission of post-hearing briefs has expired, certify the 
entire record to the Secretary (or his or her designee) including the 
recommended findings and proposed decision.
    (2) The Secretary, or his or her designee, must serve a copy of the 
recommended findings and proposed decision upon all parties and amici.
    (3) Any party may, within 20 days, file exceptions to the 
recommended findings and proposed decision and supporting brief or 
statement with the Secretary, or his or her designee.
    (4) The Secretary, or his or her designee, must review the 
recommended decision and, within 60 days of its issuance, issue his or 
her own decision.
    (c) If the Secretary, or his or her designee, concludes:
    (1) In the case of a hearing pursuant to sections 124, 127, or 143 
of the Act, that a State plan or the activities of the State's 
Protection and Advocacy System does not comply with Federal 
requirements, he or she shall also specify whether the State's payment 
or allotment for the fiscal year will not be authorized for the State 
or whether, in the exercise of his or her discretion, the payment or 
allotment will be limited to the parts of the State plan or the 
activities of the State's Protection and Advocacy System not affected 
by the noncompliance.
    (2) In the case of a hearing pursuant to section 127 of the Act 
that the State is not complying with the requirements of the State 
plan, he or she also must specify whether the State's payment or 
allotment will be made available to the State or whether, in the 
exercise of his or her discretion, the payment or allotment will be 
limited to the parts of the State plan not affected by such 
noncompliance. The Secretary, or his or her designee, may ask the 
parties for recommendations or briefs or may hold conferences of the 
parties on these questions.
    (d) The decision of the Secretary, or his or her designee, under 
this section is the final decision of the Secretary and constitutes 
``final agency action'' within the meaning of 5 U.S.C. 704 and the 
``Secretary's action'' within the meaning of section 128 of the Act (42 
U.S.C. 15028). The Secretary's, or his or her designee's, decision must 
be promptly served on all parties and amici.


Sec.  1386.112  Effective date of decision by the Secretary.

    (a) If, in the case of a hearing pursuant to section 124 of the 
Act, the Secretary, or his or her designee, concludes that a State plan 
does not comply with Federal requirements, and the decision provides 
that the payment or allotment will be authorized but limited to parts 
of the State plan not affected by such noncompliance, the decision must 
specify the effective date for the authorization of the payment or 
allotment.
    (b) In the case of a hearing pursuant to sections 127 or 143 of the 
Act, if the Secretary, or his or her designee, concludes that the State 
is not complying with the requirements of the State plan or if the 
activities of the State's Protection and Advocacy System do not comply 
with Federal requirements, the decision that further payments or 
allotments will not be made to the State, or will be limited to the 
parts of the State plan or activities of the State Protection and 
Advocacy System not affected, must specify the effective date for 
withholding payments or allotments.
    (c) The effective date may not be earlier than the date of the 
decision of the Secretary, or his or her designee, and may not be later 
than the first day of the next calendar quarter.
    (d) The provision of this section may not be waived pursuant to 
Sec.  1386.84.

PART 1387--PROJECTS OF NATIONAL SIGNIFICANCE

Sec.
1387.1 General requirements.

    Authority: 42 U.S.C. 15001 et seq.


Sec.  1387.1  General requirements.

    (a) All projects funded under this part must be of national 
significance and serve or relate to individuals with developmental 
disabilities to comply with subtitle E of the Act, sections 161-163 (42 
U.S.C. 15081-15083).
    (b) In general, Projects of National Significance (PNS) provide 
technical assistance, collect data, demonstrate exemplary and 
innovative models, disseminate knowledge at the local and national 
levels, and otherwise meet the goals of Projects of National 
Significance section 161 (42 U.S.C. 15081).
    (c) Projects of National Significance may engage in one or more of 
the types of activities provided in section 161(2) of the Act.
    (d) In general, eligible applicants for PNS funding are public and 
private non-profit entities, 42 U.S.C. 15082, such as institutions of 
higher learning, State and local governments, and Tribal governments. 
The program announcements will specifically state any further 
eligibility requirements for the priority areas in the fiscal year.
    (e) Faith-based organizations are eligible to apply for PNS 
funding, providing that the faith-based organizations meet the specific 
eligibility criteria contained in the program announcement for the 
fiscal year.

PART 1388--THE NATIONAL NETWORK OF UNIVERSITY CENTERS FOR 
EXCELLENCE IN DEVELOPMENTAL DISABILITIES, EDUCATION, RESEARCH, AND 
SERVICE

Sec.
1388.1 Definitions.
1388.2 Purpose.
1388.3 Core functions.
1388.4 National training initiatives on critical and emerging needs.
1388.5 Applications.
1388.6 Governance and administration.
1388.7 Five-year plan and annual report.

    Authority: 42 U.S.C. 15001 et seq.


Sec.  1388.1  Definitions.

    States. For the purpose of this part, ``State'' means each of the 
several States of the United States, the District of

[[Page 44825]]

Columbia, the Commonwealth of Puerto Rico, the United States Virgin 
Islands, and Guam.


Sec.  1388.2  Purpose.

    (a) The Secretary, or his or her designee awards grants to eligible 
entities designated as University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service 
(``UCEDDs'', or ``Centers'') in each State to pay for the Federal share 
of the cost of the administration and operation of the Centers. Centers 
shall:
    (1) Provide leadership in, advise Federal, State, and community 
policymakers about, and promote opportunities for individuals with 
developmental disabilities to exercise self-determination, be 
independent, be productive, and be integrated and included in all 
facets of community life.
    (2) Be interdisciplinary education, research, and public service 
units of universities or public not-for-profit entities associated with 
universities that engage in core functions, described in Sec.  1388.3, 
addressing, directly or indirectly, one or more of the areas of 
emphasis, as defined in Sec.  1385.3 of this chapter.
    (b) To conduct National Training Initiatives on Critical and 
Emerging Needs as described in Sec.  1388.4.


Sec.  1388.3  Core functions.

    The Centers described in Sec.  1388.2 must engage in the core 
functions referred to in this section, which shall include:
    (a) Provision of interdisciplinary pre-service preparation and 
continuing education of students and fellows, which may include the 
preparation and continuing education of leadership, direct service, 
clinical, or other personnel to strengthen and increase the capacity of 
States and communities to achieve the purpose of the DD Act of 2000.
    (b) Provision of community services:
    (1) That provide training or technical assistance for individuals 
with developmental disabilities, their families, professionals, 
paraprofessionals, policy-makers, students, and other members of the 
community; and
    (2) That may provide services, supports, and assistance for the 
persons listed in paragraph (b)(1) of this section through 
demonstration and model activities.
    (c) Conduct of research, which may include basic or applied 
research, evaluation, and the analysis of public policy in areas that 
affect or could affect, either positively or negatively, individuals 
with developmental disabilities and their families.
    (d) Dissemination of information related to activities undertaken 
to address the purpose of the DD Act of 2000, especially dissemination 
of information that demonstrates that the network authorized under 
Subtitle D of the Act is a national and international resource that 
includes specific substantive areas of expertise that may be accessed 
and applied in diverse settings and circumstances.


Sec.  1388.4  National training initiatives on critical and emerging 
needs.

    (a) Supplemental grant funds for National Training Initiatives 
(NTIs) on critical and emerging needs may be reserved when each Center 
described in section 152 of the DD Act has received a grant award of at 
least $500,000, adjusted for inflation.
    (b) The grants shall be awarded to Centers to pay for the Federal 
share of the cost of training initiatives related to the unmet needs of 
individuals with developmental disabilities and their families.
    (c) The grants shall be awarded on a competitive basis, and for 
periods of not more than 5 years.


Sec.  1388.5  Applications.

    (a) To be eligible to receive a grant under Sec.  1388.2 for a 
Center, an entity shall submit to the Secretary, or his or her 
designee, an application at such time, in such manner, and containing 
such information, as the Secretary, or his or her designee, may require 
for approval.
    (b) Each application shall describe a five-year plan that must 
include:
    (1) Projected goal(s) related to one or more areas of emphasis 
described in Sec.  1385.3 of this chapter for each of the core 
functions.
    (2) Measures of progress.
    (c) The application shall contain or be supported by reasonable 
assurances that the entity designated as the Center will:
    (1) Meet the measures of progress;
    (2) Address the projected goals, and carry out goal-related 
activities, based on data driven strategic planning and in a manner 
consistent with the objectives of subtitle D of the Act, that:
    (i) Are developed in collaboration with the Consumer Advisory 
Committee established pursuant to paragraph (c)(5) of this section;
    (ii) Are consistent with, and to the extent feasible complement and 
further, the Council goals contained in the State plan submitted under 
section 124 of the DD Act of 2000 and the goals of the Protection and 
Advocacy System established under section 143 of the DD Act of 2000; 
and
    (iii) Will be reviewed and revised annually as necessary to address 
emerging trends and needs.
    (3) Use the funds made available through the grant to supplement, 
and not supplant, the funds that would otherwise be made available for 
activities described in Sec.  1388.2(a)(1) and (2).
    (4) Protect, consistent with the policy specified in section 101(c) 
of the DD Act of 2000 the legal and human rights of all individuals 
with developmental disabilities (especially those individuals under 
State guardianship who are involved in activities carried out under 
programs assisted under subtitle D of the Act).
    (5) Establish a Consumer Advisory Committee:
    (i) Of which a majority of the members shall be individuals with 
developmental disabilities and family members of such individuals;
    (ii) That is comprised of:
    (A) Individuals with developmental disabilities and related 
disabilities;
    (B) Family members of individuals with developmental disabilities;
    (C) A representative of the State Protection and Advocacy System;
    (D) A representative of the State Council on Developmental 
Disabilities;
    (E) A representative of a self-advocacy organization described in 
section 124(c)(4)(A)(ii)(I) of the DD Act of 2000 (42 U.S.C. 
15024(c)(4)(A)(ii)(I)); and
    (F) Representatives of organizations that may include parent 
training and information centers assisted under section 671or 672 of 
the Individuals with Disabilities Education Act (20 U.S.C. 1471, 1472), 
entities carrying out activities authorized under section 104 or 105 of 
the Assistive Technology Act of 1998 (29 U.S.C. 3003, 3004), relevant 
State agencies, and other community groups concerned with the welfare 
of individuals with developmental disabilities and their families.
    (iii) That reflects the racial and ethnic diversity of the State;
    (iv) That shall:
    (A) Consult with the Director of the Center regarding the 
development of the five-year plan;
    (B) Participate in an annual review of, and comment on, the 
progress of the Center in meeting the projected goals contained in the 
plan;
    (C) Make recommendations to the Director of the Center regarding 
any proposed revisions of the plan that might be necessary; and
    (v) Meet as often as necessary to carry out the role of the 
committee, but at a minimum twice during each grant year.
    (6) To the extent possible, utilize the infrastructure and 
resources obtained

[[Page 44826]]

through funds made available under the grant to leverage additional 
public and private funds to successfully achieve the projected goals 
developed in the five-year plan;
    (7) Have a director with appropriate academic credentials, 
demonstrated leadership, expertise regarding developmental 
disabilities, significant experience in managing grants and contracts, 
and the ability to leverage public and private funds; and
    (i) Allocate adequate staff time to carry out activities related to 
each of the core functions described in Sec.  1388.3.
    (ii) [Reserved]
    (8) Educate, and disseminate information related to the purpose of 
the DD Act of 2000 to the legislature of the State in which the Center 
is located, and to Members of Congress from such State.
    (d) All applications submitted under this section shall be subject 
to technical and qualitative review by peer review groups as described 
under paragraph (d)(1) of this section.
    (1) Each peer review group shall include such individuals with 
disabilities and parents, guardians, or advocates of or for individuals 
with developmental disabilities, as are necessary to carry out this 
section.
    (2) [Reserved]
    (e)(1) The Federal share of the cost of administration or operation 
of a Center, or the cost of carrying out a training initiative, 
supported by a grant made under subtitle D of the Act may not be more 
than 75 percent of the necessary cost of such project, as determined by 
the Secretary, or his or her designee.
    (2) In the case of a project whose activities or products target 
individuals with developmental disabilities who live in an urban or 
rural poverty area, as determined by the Secretary, or his or her 
designee, the Federal share of the cost of the project may not be more 
than 90 percent of the necessary costs of the project, as determined by 
the Secretary, or his or her designee.


Sec.  1388.6  Governance and administration.

    (a) The UCEDD must be associated with, or an integral part of, a 
university and promote the independence, productivity, integration, and 
inclusion of individuals with developmental disabilities and their 
families.
    (b) The UCEDD must have a written agreement or charter with the 
university, or affiliated university that specifies the UCEDD 
designation as an official university component, the relationships 
between the UCEDD and other university components, the university 
commitment to the UCEDD, and the UCEDD commitment to the university.
    (c) Within the university, the UCEDD must maintain the autonomy and 
organizational structure required to carry out the UCEDD mission and 
provide for the mandated activities.
    (d) The UCEDD Director must report directly to, or be, a University 
Administrator who will represent the interests of the UCEDD within the 
University.
    (e) The University must demonstrate its support for the UCEDD 
through the commitment of financial and other resources.
    (f) UCEDD senior professional staff, including the UCEDD Director, 
Associate Director, Training Director, and Research Coordinator, must 
hold faculty appointments in appropriate academic departments of the 
host or an affiliated university, consistent with university policy. 
UCEDD senior professional staff must contribute to the university by 
participation on university committees, collaboration with other 
university departments, and other university community activities.
    (g) UCEDD faculty and staff must represent the broad range of 
disciplines and backgrounds necessary to implement the full inclusion 
of individuals with developmental disabilities in all aspects of 
society, consonant with the spirit of the Americans with Disabilities 
Act (ADA).
    (h) The management practices of the UCEDD, as well as the 
organizational structure, must promote the role of the UCEDD as a 
bridge between the University and the community. The UCEDD must 
actively participate in community networks and include a range of 
collaborating partners.
    (i) The UCEDD's Consumer Advisory Committee must meet regularly. 
The membership of the Consumer Advisory Committee must reflect the 
racial and ethnic diversity of the State or community in which the 
UCEDD is located. The deliberations of the Consumer Advisory Committee 
must be reflected in UCEDD policies and programs.
    (j) The UCEDD must maintain collaborative relationships with the 
SCDD and P&A. In addition, the UCEDD must be a permanent member of the 
SCDD and regularly participate in Council meetings and activities, as 
prescribed by the Act.
    (k) The UCEDD must maintain collaborative relationships and be an 
active participant with the UCEDD network and individual organizations.
    (l) The UCEDD must demonstrate the ability to leverage additional 
resources.
    (m) The university must demonstrate that the UCEDD have adequate 
space to carry out the mandated activities.
    (n) The UCEDD physical facility and all program initiatives 
conducted by the UCEDD must be accessible to individuals with 
disabilities as provided for by section 504 of the Rehabilitation Act 
and Titles II and III of the Americans with Disabilities Act.
    (o) The UCEDD must integrate the mandated core functions into its 
activities and
    programs and must have a written plan for each core function area.
    (p) The UCEDD must have in place a long range planning capability 
to enable it to respond to emergent and future developments in the 
field.
    (q) The UCEDD must utilize state-of-the-art methods, including the 
active participation of individuals, families and others of UCEDD 
programs and services to evaluate programs. The UCEDD must refine and 
strengthen its programs based on evaluation findings.
    (r) The UCEDD Director must demonstrate commitment to the field of 
developmental disabilities, leadership, and vision in carrying out the 
mission of the UCEDD.
    (s) The UCEDD must meet the ``Employment of Individuals with 
Disabilities'' requirements as described in section 107 of the Act.


Sec.  1388.7  Five-year plan and annual report.

    (a) As required by section 154(a)(2) of the DD Act of 2000 (42 
U.S.C. 15064), the application for core funding for a UCEDD shall 
describe a five-year plan, including a projected goal or goals related 
to one or more areas of emphasis for each of the core functions in 
section 153(a)(2) of the DD Act of 2000 (42 U.S.C.15063).
    (1) For each area of emphasis under which a goal has been 
identified, the UCEDD must state in its application the measures of 
progress with the requirements of the law and applicable regulation, in 
accordance with current practice.
    (2) If changes are made to the measures of progress established for 
a year, the five-year plan must be amended to reflect those changes and 
approved by AIDD upon review.
    (3) By July 30 of each year, a UCEDD shall submit an Annual Report, 
using the system established or funded by AIDD. In order to be accepted 
by AIDD, an Annual Report must meet the requirements of section 154(e) 
of the Act (42 U.S.C. 15064) and, the applicable regulations, and 
include the information necessary for the Secretary, or his or her 
designee, to comply with section 105(1), (2), and (3) of the Act (42 
U.S.C. 15005) and any other information requested by AIDD. The Report 
shall include information on progress made in

[[Page 44827]]

achieving the UCEDD's goals for the previous year, including:
    (i) The extent to which the goals were achieved;
    (ii) A description of the strategies that contributed to achieving 
the goals;
    (iii) The extent to which the goals were not achieved;
    (iv) A detailed description of why goals were not met; and
    (v) An accounting of the manner in which funds paid to the UCEDD 
for a fiscal year were expended.
    (4) The Report also must include information on proposed revisions 
to the goals and a description of successful efforts to leverage funds, 
other than funds under the Act, to pursue goals consistent with the 
UCEDD program.
    (5) Each UCEDD must include in its Annual Report information on its 
achievement of the measures of progress.
    (b) [Reserved]

[FR Doc. 2015-18070 Filed 7-24-15; 8:45 am]
 BILLING CODE 4150-04-P