Developmental Disabilities Program, 19708-19741 [E8-7412]

Agencies

• DEPARTMENT OF HEALTH AND HUMAN SERVICES

[Federal Register Volume 73, Number 70 (Thursday, April 10, 2008)]
[Proposed Rules]
[Pages 19708-19741]
From the Federal Register Online via the Government Printing Office [www.gpo.gov]
[FR Doc No: E8-7412]



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Part III





Department of Health and Human Services





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45 CFR Parts 1385, 1386, 1387, and 1388



Developmental Disabilities Program; Proposed Rule

Federal Register / Vol. 73, No. 70 / Thursday, April 10, 2008 / 
Proposed Rules

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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 Developmental Disabilities, Administration 
for Children and Families, HHS.

ACTION: Notice of proposed rulemaking (NPRM).

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SUMMARY: This rule proposes clarifications and new requirements to 
implement the Developmental Disabilities Assistance and Bill of Rights 
Act of 2000 (DD Act of 2000). Of particular note, the proposed rule 
covers responsibilities of the Secretary in the area of program 
accountability and the indicators of progress. Under the proposal, one 
or more measures of progress must be used to measure the goal(s) 
developed for each area of emphasis. The areas of emphasis include: (1) 
Quality assurance activities; (2) education activities and early 
intervention activities; (3) child care-related activities; (4) health-
related activities; (5) employment-related activities; (6) housing-
related activities; (7) transportation-related activities; (8) 
recreation-related activities; and (9) other services available or 
offered to individuals in a community, including formal and informal 
community supports that affect their qualify of life.

DATES: Comments will be accepted through June 9, 2008.

ADDRESSES: Interested persons are invited to submit comments regarding 
this proposed rule to: Commissioner, Administration on Developmental 
Disabilities, Administration for Children and Families, 370 L'Enfant 
Promenade SW., Mail Stop: HHH 405D, Washington, DC 20447. Persons may 
also transmit comments electronically via the Internet at: https://
www.regulations.acf.hhs.gov. Electronic comments must include the full 
name, address, and organizational affiliation (if any) of the 
commenter. All comments and letters will be available for public 
inspection, Monday through Friday 7 a.m. to 4 p.m., at the address 
above, by calling (202) 690-5841 to set up an appointment and gain 
entry to the building. Electronically-submitted comments will be 
available for viewing immediately. To download an electronic version of 
the rule, you should access ACF's regulation page at: https://
www.regulations.acf.hhs.gov or www.regulations.gov.

FOR FURTHER INFORMATION CONTACT: Elsbeth Porter Wyatt, Administration 
on Developmental Disabilities, telephone (202) 690-5841 (Voice). The 
TDD telephone number for the Administration on Developmental 
Disabilities is (202) 690-6415. These are not toll-free numbers. This 
document will be made available in alternative formats upon request.

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. 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). The DD Act of 2000 directs the 
Secretary of Health and Human Services to implement an accountability 
process to monitor the grantees that receive funds under the Act 
(Section 104(a)(3), 42 U.S.C. 15004(a)(3)). The process is to identify 
and report on progress achieved through advocacy, capacity building, 
and systemic change activities. Indicators of progress are to be 
developed for each area of emphasis and each entity receiving funds is 
required to meet these indicators of progress. A report to the 
President, Congress, and the National Council on Disability must be 
prepared using information on grantee progress with regard to these 
indicators every two years. Activities that focus on coordination and 
collaboration within and across the programs must be included in the 
report.
    The accountability system and the new reporting requirements form 
the substantive basis of this proposed rule. In addition, the proposed 
rule addresses the following changes made by the DD Act:
     The DD Act of 2000 also requires State Councils 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)(1)(C)(3)).
     The DD Act of 2000 also requires that a Protection and 
Advocacy (P&A) governing board be selected by the P&A and be subject to 
the policies and procedures the P&A chooses to establish. The 
membership of the board is now subject to term limits set by the P&A to 
ensure rotating membership. The DD Act of 2000 strengthens provisions 
regarding access to service providers and records of individuals with 
developmental disabilities in order to investigate potential abuse and 
neglect. Also, the State must now provide information to a P&A about 
the adequacy of health care and other services, supports, and other 
assistance that individuals with developmental disabilities receive 
through home and community-based waivers.
     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, ADD is required to award 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 would be in 
States or for populations that are unserved or underserved due to such 
factors as population, a high concentration of rural or urban areas or 
a high concentration of unserved or underserved populations (Section 
152(d)).
     Finally, the DD Act of 2000 authorizes Federal interagency 
initiatives 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 through the Projects of 
National Significance program.
    While not the subject of this proposed rule, 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.

II. Grantees of the Administration on Developmental Disabilities (ADD) 
Network Under the Act

A. Protection and Advocacy of Individual Rights

    Formula grants are made to each State and other eligible 
jurisdictions for the establishment of a system to protect and advocate 
for the rights of individuals with developmental disabilities (P&As).

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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, with 
particular attention to members of ethnic and racial minority groups. 
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.

B. Federal Assistance to State Councils on Developmental Disabilities

    Formula grants are made to each State and other eligible 
jurisdictions to support a State Council on Developmental Disabilities 
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. Formula grants provide 
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. Activities contribute to a coordinated, consumer and family-
centered, consumer 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.

C. Projects of National Significance

    Under subtitle E of title I of the Act, ADD may award grants, 
contracts or cooperative agreements for Projects of National 
Significance (PNS) to enhance the independence, productivity, and 
inclusion of individuals with developmental disabilities. Generally, 
projects are to promote promising practices, demonstrate innovative 
approaches, provide technical assistance, collect data, educate 
policymakers, disseminate information, and expand opportunities for 
individuals with disabilities to participate in decision making and 
community life.

D. National Network of University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDs). 
[Formerly University Affiliated Programs/UAP]

    In order to provide leadership, advise Federal, State, and 
community policymakers, and promote self-determination, independence, 
productivity, and full integration of individuals with developmental 
disabilities, grants are awarded to entities designated as Centers in 
the States and other eligible jurisdictions. The Centers 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 NPRM

    This proposed regulation addresses the requirements of the DD Act 
of 2000 and reflects input from the grantees of the ADD network (State 
Councils on Developmental Disabilities, P&As, UCEDDs, and the national 
organizations that represent them: The National Association of 
Developmental Disability Councils (NADDC), the National Association of 
Protection and Advocacy Systems (NAPAS), and the Association of 
University Centers on Disabilities (AUCD)).
    Key proposed provisions are as follows:
    (a) The Definitions section (Sec.  1385.3) of the regulations has 
been updated to reflect terms defined in the statute that apply to all 
of the programs authorized by the DD Act of 2000;
    (b) Section 1385.5 of the regulations has been added to address 
program accountability and indicators of progress requirements for the 
State Councils on Developmental Disabilities, P&As and UCEDDs as added 
by Section 104(a) of the DD Act of 2000;
    (c) Current section 1386.22 of the regulations addresses access to 
records, facilities and individuals with developmental disabilities. We 
propose to move and revise this section to establish these regulations 
as a separate subpart C for the Protection and Advocacy Program;
    (d) Section 1388.5 of the regulations addresses the five-year plan 
and reporting requirements for UCEDDs. This section proposes a new 
Annual Report for UCEDDs to meet the requirements of the Act (42 U.S.C. 
15064).
    Technical and conforming changes to other sections of the rules for 
the DD Act programs have been made to address new terminology and 
revised statutory cites and to provide clarity. For ease of public 
understanding and comment, we have republished the regulatory text of 
all provisions of 45 CFR Chapter XIII, Subchapter I, The Administration 
on Developmental Disabilities, Developmental Disabilities Program in 
full.
    In developing this proposed regulation ADD examined many issues 
tied to the legislation and the administration of the programs funded 
under the DD Act.
    One issue for which we specifically seek public comment is whether 
the current process involving class action lawsuits provides adequate 
protection for individuals with developmental disabilities. For 
example, in order to include an individual as a member of a class what 
criteria should be applied or clearance process should be followed? 
Informed consent is a cornerstone of class action lawsuits to protect 
the rights of individuals who may choose to be or not to be members of 
a potential class. When an individual has a developmental disability a 
guardian may have a role in that decision. State laws vary greatly with 
regard to the roles and authority of guardians. What happens when there 
is a difference of opinion between the individual and guardian on 
whether to be a member of a class action lawsuit? It would be very 
helpful to receive comments on the procedures used to reach decisions 
on whether to pursue class action lawsuits and the method of informing/
obtaining consent. We will carefully consider all comments provided to 
determine whether any changes are warranted in the final regulations to 
ensure adequate protection of individual choice.
    Another issue is the question of which activities grantees may 
engage in to influence legislation and still be in compliance with 
statutes, regulations and OMB Circulars which generally restrict such 
activities and other activities ordinarily referred to as ``lobbying.'' 
The questions arise because State Councils, Protection and Advocacy 
agencies (P&As), University Centers for Excellence and Projects of 
National Significance are authorized under the provisions of the DD 
Act, to ``educate,'' ``advise'' or ``inform'' Federal, State and local 
policymakers. Sections 125(a)(5)(J), 143(a)(2)(L), 153(a)(1), and 
161(2)(D)(iii). The ``policymakers'' referred to in the statute

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include members of Congress, officials of the Federal executive branch, 
Governors, members of State legislatures and staff of State agencies.
    Congress customarily has included in the annual appropriations acts 
for HHS language restricting the use of appropriated funds to influence 
legislation. See, e.g., Section 503 of Public Law 209-149. 
Additionally, all projects funded by ADD, including those projects 
funded for the purpose of informing, educating or advising 
policymakers, are subject to restrictions on the use of Federal funds 
for lobbying purposes. Non-profit organizations receiving ADD awards 
are subject to the requirements of OMB Circular A-122, Attachment B, 
Paragraph 25, pertaining to lobbying.
    A section-by-section discussion of the significant changes made by 
this proposed regulation follows:

PART 1385--REQUIREMENTS APPLICABLE TO THE DEVELOPMENTAL DISABILITIES 
PROGRAMS

Section 1385.1 General

    Section 1385.1 General, covers administrative requirements for the 
ADD Network grantees. We are proposing to amend Sec.  1385.1 of this 
part by revising the introductory text to include a reference to 
section 1385.5 Program Accountability and Indicators of Progress. 
Paragraph (a) is proposed to be amended to update the name of the State 
Developmental Disabilities Councils to State Councils on Developmental 
Disabilities. Similarly, paragraph (b) is proposed to be amended to 
update the reference from Protection and Advocacy of the Rights of 
Individuals with Developmental Disabilities to Protection and Advocacy 
of Individual Rights. Paragraph (d) is proposed to be amended to update 
the reference from University Affiliated Programs to National Network 
of University Centers for Excellence in Developmental Disabilities 
Education, Research, and Service. These changes are proposed to conform 
the regulations with the language of the DD Act of 2000.

Section 1385.2 Purpose of the Regulation

    This section of the NPRM proposes to update the statutory reference 
to reflect enactment of the Developmental Disabilities Assistance and 
Bill of Rights Act of 2000.

Section 1385.3 Definitions

    This section of the NPRM updates terminology and definitions 
resulting from enactment of the Developmental Disabilities Assistance 
and Bill of Rights Act of 2000 and other necessary updates.

Section 1385.4 Rights of Individuals With Developmental Disabilities

    We are proposing to amend paragraph (a) to update the statutory 
citations. Section 109 of the Act is only applicable to State Councils 
on Developmental Disabilities. Additionally, the DD Act of 2000 
repealed the requirement that Councils, UAPs and Projects of National 
Significance provide assurances of compliance with Section 110 of the 
Act.
    Similarly, we are proposing to amend paragraph (b) to update 
statutory and U.S. Code citations for this requirement of the Councils 
and the submission of the State plan.
    We are proposing to amend paragraph (c). The PNS reference is being 
deleted as the Act no longer contains this provision or a comparable 
requirement. The UAP reference is proposed to be updated to refer to 
UCEDD and the application's assurance of compliance cite is being 
changed to Section 101(c) of the Act as provided in Section 
154(a)(3)(D) of the Act of 2000.

Section 1385.5 Program Accountability and Indicators of Progress

    We propose to add under section 1385.5, previously reserved, the 
Program Accountability and Indicators of Progress requirements for ADD 
grantees.
    The DD Act of 2000 requires that: (1) There be indicators of 
progress for each area of emphasis; (2) the indicators of progress be 
used by the Secretary and grantees to describe and measure at a minimum 
progress in advocacy, capacity building, and systemic change activities 
by satisfaction, collaboration, and improvement; (3) the indicators of 
progress be complied by grantees; (4) the indicators of progress result 
in information which can be included in the Secretary's report to 
Congress; and (5) the Secretary have a monitoring process for 
establishing program accountability that incorporates the indicators of 
progress.
    As proposed in section 1385.3, the areas of emphasis under the DD 
Act include: 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 support that affect 
their quality of life.
    The NPRM establishes the requirements for State Councils, P&As, and 
UCEDDs to identify, characterize, and track progress on grant goals. 
Each goal must be related to an area of emphasis. First, a grantee must 
select a goal or goals for the year in question. Second, a grantee must 
select a type of activity--advocacy, capacity building, or systemic 
change--through which each goal shall be undertaken. Third, a grantee 
must track progress on each goal by establishing measures of progress.
    The measures of progress must describe and measure: (1) Consumer 
satisfaction with the services provided through the activities of the 
grantee under its ADD funded program; (2) collaboration with other ADD 
grantees subject to the regulation; and (3) improvements in the ability 
of individuals with developmental disabilities to make choices about 
and exert control over the services which they receive, to participate 
in the full range of community life with persons of the individual's 
choice, and to access services, supports, and assistance to ensure the 
individual is free from exploitation, violations of legal and human 
rights, and inappropriate restraint or seclusion.
    The approach taken by the Administration on Developmental 
Disabilities in developing the proposed regulations was to comply with 
the requirements of the Act while preserving the capacity of grantees 
to design their programs to meet the needs of their individual 
communities as provided under the Federal Assistance to State Councils 
on Developmental Disabilities, the system of Protection and Advocacy of 
Individual Rights, and the national network of University Centers for 
Excellence in Developmental Disabilities Education, Research, and 
Service.
    The proposed regulations were developed in response to these 
requirements as follows: paragraph (a) Program Accountability Process; 
paragraph (b) Measures of Progress; paragraph (c) Indicators of 
Progress; paragraph (d) Measures of Consumer Satisfaction; paragraph 
(e) Measures of Collaboration; and paragraph (f) Measures of 
Improvement.
    For each area of emphasis under which a goal has been identified, 
each State Council on Developmental Disabilities, P&A, and UCEDD must 
state in its required planning document (State plan for Councils, 
Statement of Goals and Priorities for P&As, and the Five-Year plan for 
UCEDDs) the measures of progress (measures of

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consumer satisfaction, improvement, and collaboration) to be applied to 
its goals in the areas of emphasis selected for each year covered by 
the planning document. Each UCEDD plan also must categorize its goals 
under both an area of emphasis and one of its four core functions. 
Those functions are: (1) Interdisciplinary pre-service preparation and 
continuing education of students and fellows; (2) community services 
that provide training or technical assistance; (3) conduct of research; 
and (4) dissemination of information.
    Accordingly, under paragraph (a)(1) as proposed, the required 
planning document must classify under one or more areas of emphasis 
each of the goals related to advocacy, capacity building, and systemic 
change activities to be pursued during the year. The areas of emphasis 
selected may vary from grantee to grantee. UCEDDS also must classify 
any goal activity in terms of mandated core functions. Following is an 
example of the Education and Early Intervention area of emphasis using 
the goal of children with developmental disabilities being included in 
preschool programs:

    Example: Area of Emphasis: Education and Early Intervention.

 
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    Long-term goal     Short-term  objective  Role of State Council       Role of P&A           Role of UCEDD
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Children with          Number of children     Present information    Train parents on       Train Head Start
 developmental          with developmental     to Head Start          legal rights of        providers on
 disabilities are       disabilities in Head   directors on number    children with          inclusion of
 included in            Start programs will    of children with       developmental          children with
 preschool programs.    increase by 10%.       developmental          disabilities to        developmental
                                               disabilities waiting   participate in         disabilities in the
                                               for inclusive          preschool programs.    classroom.
                                               preschool programs.    Include information   Follow up to
                                              Attend meetings of      on accessibility,      determine actual
                                               Head Start directors   ADA, assistive         increase in number
                                               to outline issues      technology, etc.       of children
                                               and barriers.                                 included.
                                              Convene meeting of
                                               Head Start directors
                                               and DD Act network
                                               to develop plan of
                                               action.
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    Paragraph (a)(2) requires that for each area of emphasis the 
required planning document must include measures of progress for goals 
identified measuring: Consumer satisfaction; collaboration; and 
improvements in outcomes for persons with developmental disabilities. 
Measures of progress developed must be able to, over time, demonstrate 
whether the grantee has achieved progress in meeting the goals of the 
Act through its advocacy, capacity building, and systemic change 
activities.
    Paragraph (a)(3) provides that the measures of progress must meet 
all applicable program regulations. In the event the planning document 
fails to meet these regulatory requirements, the Commissioner shall 
decline to accept the planning document.
    Paragraph (a)(4) requires that the results of the application of 
the measures of progress for each areas of emphasis under which a goal 
has been established be reported.
    Paragraph (c) of the proposed rule requires that for each of the 
areas of emphasis under which the State Councils on Developmental 
Disabilities, the P&A, or UCEDD has classified activities, the 
indicators of progress shall be the grantee's achievement of the 
measures of progress it has established pursuant to this section for 
the years on which the grantee is reporting. Each State Council on 
Developmental Disabilities, the P&A, and UCEDD is required to meet the 
indicators of progress for each of the areas of emphasis in which it 
has classified activities for the year on which it is reporting.
    Measures of consumer satisfaction are addressed under proposed 
paragraph (d). Under this paragraph, each State Council on DD, P&A, and 
UCEDD must establish criteria on the level of consumer satisfaction to 
be attained for each area of emphasis for each goal identified and 
track its progress.
    Any grantee that is a member of the ADD Network must establish a 
goal or goals in one or more areas of emphasis. For each area of 
emphasis selected, a grantee must measure progress related to its 
goal(s) through activity(ies) in terms of consumer satisfaction in each 
of its selected area(s) of emphasis. Consumer satisfaction may be 
measured by the results of surveys of individuals with developmental 
disabilities affected by its activities, surveys of stakeholders, focus 
groups, and phone interviews. A grantee may include reports on whether 
the planned activity associated with a goal resulted in improved access 
to services for individuals with developmental disabilities.
    The following is an example of consumer satisfaction measures with 
respect to a Council. A State does not currently have a program to 
financially assist families who care for their children with 
developmental disabilities who live at home. A Council plans to fund a 
voucher program to support these families and children. Using examples 
from other States, several different approaches will be used with 
vouchers going toward different services including housing and child 
care. The Council plans to locate families and provide vouchers. 
Consumer satisfaction is measured through a post-activity 
questionnaire. A consumer survey of the program is planned to provide 
this information. The survey will address how the activity: (1) 
Improved the ability of individuals with developmental disabilities to 
exert choice and control over the services, support, and assistance; 
(2) Improved the ability to participate in community life; (3) Improved 
the ability to access services in a way that the individual is free 
from abuse, neglect, exploitation, and harmful treatment; and (4) 
Improved the individual's situation and circumstances. A final 
evaluation will lead to the development of a legislative proposal to 
introduce a permanent program for the State. This would be a Council 
systemic change, capacity building activity. The results of these 
measures must be reported in the annual Program Performance Report.
    The following is an example for P&As. A P&A plans to represent 
children who are not being allowed into an inclusive program at schools 
within the State. Looking at enrollment data the P&A targets three 
counties. The P&A identifies the cases of greatest need. The

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P&A then works with the school districts on Individualized Education 
Programs, facilitating the placement of children with developmental 
disabilities into regular classrooms. The P&A documents the numbers of 
children placed in inclusive programs as a result of the intervention, 
surveys those involved with this initiative and obtains their input to 
assist the P&A with future advocacy activities. This is a P&A advocacy 
activity. The goals in this example focus on: Identifying clients to be 
served; targeted education and early intervention as the area of 
emphasis; tracking progress through improvement measures; and, surveys 
that measure client satisfaction.
    The following is a UCEDD example. A UCEDD wants to train a group of 
pediatricians to serve individuals with developmental disabilities. The 
UCEDD identifies the group and provides the training. It checks back 
with the pediatricians to see if the training helped them. Consumer 
satisfaction is measured through a survey of a sample of patients or 
family members/advocates to assess the level of their satisfaction with 
their pediatricians trained by the UCEDD and to receive recommendations 
on expansion or changes in the training activities. This is a UCEDD 
capacity building activity. The goals in this example focus on the 
health area of emphasis. The type of activity includes training via 
curricula, role playing, case example, and/or consumer or family 
member/advocate interview or presentation. The UCEDD measure of 
progress would be an increase in pediatricians' caseloads of clients 
with developmental disabilities and patients being satisfied with the 
care they received from trained pediatricians.
    Proposed paragraph (e) specifies the requirement related to 
measures of collaboration. Under this paragraph, we propose to require 
each Council, P&A, and UCEDD to identify collaborative activities it 
will implement for each area of emphasis related to a goal. Under the 
proposal, UCEDDs also must identify interstate collaborative 
activities. In-state collaborations must include a meeting or 
Memorandum of Understanding on the proposed collaborative activities.
    Collaboration among a State's ADD grantees is very important. By 
collaboration ADD means efforts in which all three categories of a 
State's grantees work together (State Council, P&A, and UCEDD). In some 
States there are multiple UCEDDs. In these States the multiple UCEDDs 
would be expected to collaborate with each other and the State's 
Council and P&A.
    Proposed paragraph (f) specifies requirements related to measures 
of improvement. Under this proposed paragraph, State DD Councils, P&As, 
and UCEDDs must establish measures of improvement they will attain for 
each area of emphasis where a goal has been established by assessing 
the extent to which grantee activities have improved outcomes for 
individuals with developmental disabilities.
    Specifically, under the proposed rule, improvement measures assess 
the contribution of a grantee's activity to the ability of individuals 
with developmental disabilities to: (1) Make choices and exert control 
over the type, intensity, and timing of services, supports, and 
assistance that the individuals have used; (2) participate in the full 
range of community life with persons of the individual's choice; and 
(3) access services, supports and assistance in a manner that ensures 
that such an individual is free from abuse, neglect, sexual and 
financial exploitation, violation of legal and human rights, and the 
inappropriate use of restraints and seclusion.
    Improvement measures a grantee selects will be influenced by the 
nature of the goal(s) set by a grantee for its selected area(s) of 
emphasis. Describing and measuring improvements requires collection of 
baseline data and then tracking change. It would be appropriate to use 
either qualitative or quantitative measures, or both. ADD recognizes 
that a goal, rather than an area of emphasis, may be a determinant 
factor when a grantee decides on which improvement measures to use.
    The following is an example of improvement measures with respect to 
a Council. A Council selects the area of emphasis on employment. A goal 
is established that individuals with developmental disabilities will be 
employed through a variety of flexible employment options, including 
self-employment and working for temporary service agencies. The 
activities are to foster collaboration, provide technical assistance 
and training. The Council will work with the Division of Vocational 
Services (DVS) who will then contact interested individuals to develop 
work plans. Such plans will include marketing strategies and budgeting 
for fiscal responsibility. The Council will coordinate small, low-
interest loans through the local Business Leadership network and the 
Chamber of Commerce. Measures of progress will include: Adults have 
jobs of their choice through Council efforts; increased dollars 
leveraged for employment programs; employment programs or policies are 
created/improved; and individuals with developmental disabilities have 
additional employment opportunities.
    An example of an improvement measure with respect to an agency 
designated to administer the State P&A system follows. A P&A agency 
selects the area of emphasis on employment. A goal is established to 
reduce discrimination in the hiring, promotion, termination and failure 
to provide reasonable accommodations for people with developmental 
disabilities. The activities will be tied to requests for assistance. A 
case comes up involving a thirty year old person with mental 
retardation who lives in the community and has worked in the mailroom 
of a local bank for seven years. Following a change in management, the 
individual has a new supervisor. This supervisor has been increasingly 
hostile to the individual, including making it difficult for the 
individual's job coach to provide on-site assistance. In this case, the 
P&A will document that they provided training to management of the bank 
on the Americans with Disabilities Act, information on what constitutes 
a reasonable accommodation and information on the importance of natural 
supports to assist individuals with developmental disabilities to live 
and succeed in the community. This information included literature and 
contact information. The measure of progress will include increased 
consumer satisfaction with changes in workplace conditions after P&A 
intervention, and individuals with developmental disabilities will 
retain jobs in competitive workplace environments. The P&A would use 
this measure as baseline and work towards increasing the number of 
individuals being served.
    An example of improvement measures with respect to a University 
Center follows. A UCEDD wants to develop, implement, and evaluate a 
comprehensive statewide training program for direct support 
professionals (e.g., personal care assistants, occupational and 
physical therapy aides, home health aides, medical assistants, and 
human services case managers). The UCEDD establishes a timeframe of 
five years. The UCEDD develops a curriculum, obtaining input from other 
UCEDDs and other network partners and from individuals with 
developmental disabilities or family members/advocates. The UCEDD 
trains direct support professionals with the curriculum. The UCEDD 
evaluates its program annually and at the end of the five-year period, 
using input from all parties involved with respect to their 
satisfaction and recommendations for

[[Page 19713]]

future activities and revision of materials. The goals of this example 
focus on the health area of emphasis. The type of activity includes 
training via modules, role-playing, case examples, and/or consumer or 
family member/advocate interview or presentation. The proposed UCEDD 
measure of progress would be an increase in the number of direct 
support personnel successfully trained.
    As indicated above, under this proposed rule the areas of emphasis 
may vary from grantee to grantee. Examples that highlight the 
flexibility grantees have in selecting areas of emphasis include: (1) 
State Councils--One Council may focus on activities that support 
individuals with developmental disabilities in obtaining employment, 
while another Council may award funding to a model demonstration 
project to provide vouchers for respite care to families of persons who 
have developmental disabilities; (2) Protection and Advocacy System 
(P&A)--One P&A may spend time assisting children with developmental 
disabilities to secure an education in their neighborhood schools, 
while another P&A may focus on abuse and neglect within a large State-
run residential facility; (3) University Centers for Excellence in 
Developmental Disabilities Education, Research, and Service (UCEDDs)--
One UCEDD may provide direct clinical services by performing diagnostic 
evaluations on children with developmental disabilities, while another 
UCEDD may be involved with aging issues and people with developmental 
disabilities. This NPRM maximizes flexibility and fosters collaboration 
among grantees of the ADD Network.
    These proposed provisions are based in part on input from the 
field. The requirements also represent an evolution of a product called 
the ADD Roadmap to the Future, written prior to the DD Act of 2000. The 
Roadmap was developed to establish performance measures. Reporting 
mechanisms were developed in response to the requirements of the 
Government Performance and Results Act (GPRA) in 1993.
    GPRA was passed in response to ongoing concerns that policy making, 
spending decisions, and program oversight were being hindered by 
insufficient information about program performance and results. GPRA 
holds agencies accountable for program performance by requiring the 
development of a five-year strategic plan, an annual performance plan, 
and an annual performance report. The strategic plan must include a 
comprehensive mission statement and general goals and objectives 
covering the major functions and operations of the agency. The annual 
performance plan must: (1) Be consistent with the agency's strategic 
plan; (2) establish measurable performance goals; and (3) describe the 
operational processes, resources and technology required to meet the 
performance goals. The agency must submit an annual performance report 
to the President and the Congress on the results for the previous 
fiscal year. The performance report compares the annual performance 
goals established for the fiscal year with the actual performance 
achieved in that year. The report assesses the progress made in 
achieving the goals and explains factors causing deviations from the 
original goal targets.
    It is important that the ADD programs continue to focus on the GPRA 
measures, where applicable, as well as the goals and activities tied to 
the measures of progress.
    Prior to 2002, ADD's GPRA measures focused on consumer impact, 
systemic change, and the establishment of baseline data in the areas of 
employment, housing, education, health, self-determination, and 
community inclusion. Although grantees may focus on any area(s) of 
emphasis through their goals, we encourage that goals be tied to ADD's 
GPRA measures.

Section 1385.6 Employment of Individuals With Disabilities

    This section of the regulation addresses grantee responsibilities 
regarding affirmative action and employment tied to disability without 
discrimination and is proposed to be published unchanged except to 
update statutory and U.S. Code citations.

Section 1385.7 Reports of the Secretary

    We are proposing to add a new section covering Reports of the 
Secretary as required by Section 105 of the DD Act of 2000 (42 U.S.C. 
15005) at Sec.  1385.7 which is currently reserved. Under the proposed 
language, in order for ADD to have the required information to prepare 
the Report to Congress all grantees would be required to submit plans, 
applications and reports that label goals, activities and results 
clearly in terms of the following: Area of emphasis, type of activity, 
and categories of measures of progress.

Section 1385.8 Formula for Determining Allotments

    This section addresses how the Commissioner will allocate funds 
appropriated under the Act for the Councils and the P&As. This section 
of the regulation is proposed to be published unchanged except to 
update the reference from State Developmental Disabilities Councils to 
State Councils on Developmental Disabilities.

Section 1385.9 Grants Administration

    The NPRM proposes technical changes to Sec.  1385.9 to include 
reference to two additional parts of title 45 CFR that apply to grants 
under this section, 45 CFR part 76--Government-Wide Debarment and 
Suspension (Non-Procurement) and Government-Wide Requirements for Drug-
Free Workplace and 45 CFR part 93--New Restrictions on Lobbying, and to 
delete reference to Part 75--Informal Appeal Procedures, as these 
requirements have been withdrawn by the Department of Health and Human 
Services. Other changes are proposed to address terminology changes 
made by the DD Act of 2000.

PART 1386--FORMULA GRANT PROGRAMS

Subpart A--Basic Requirements

Section 1386.1 General
    The NPRM proposes technical changes to Sec.  1386.1 to update the 
terminology.
Section 1386.2 Obligation of Funds
    Similarly, the NPRM revises Sec.  1386.2 to update terminology.
    We propose to revise the title of subpart B to read: Subpart B--
Protection and Advocacy of Individual Rights.
Section 1386.19 Definitions
    This section of the NPRM revises the terms and definitions that 
apply in Sec. Sec.  1386.20, 1386.21, 1386.24 and 1386.25 of this 
subpart and to subpart C. Specifically:
     The definition of ``abuse'' has been revised to be 
consistent with the interpretation contained in the preamble 
accompanying the Protection and Advocacy for Individual with Mental 
Illness (PAIMI) regulation, at 62 FR 53551 (Oct. 15, 1997). The current 
regulation includes a list of acts that constitute abuse. The new 
language indicates that what constitutes abuse is not limited to these 
acts. The regulation does not define specifically the threshold at 
which a violation of an individual's rights constitutes abuse. Such a 
decision would be up to the P&A system to determine based on their 
intimate knowledge of the situation on behalf of an individual with 
developmental disabilities. The definition is not intended to limit the 
authority of the courts to review the

[[Page 19714]]

determinations of P&As of whether individuals with developmental 
disabilities have been subject to abuse.
     The definition of ``American Indian Consortium'' was added 
to clarify the eligibility requirements for the award of an American 
Indian Consortium under the P&A program. The American Indian Consortium 
is unique to the P&A program and carries out the responsibilities and 
exercises the authorities specified for a state.
     The definition of ``complaint'' has been revised from 
language indicating that the complaint be tied to alleged abuse or 
neglect of an individual with a developmental disability to broader 
language indicating that the complaint relates to the status or 
treatment of an individual with a developmental disability.
     The definition of the term ``facility'' was deleted. The 
Act no longer refers to ``facilities,'' but instead refers to ``a 
location in which services, supports, or other assistance are provided 
to an individual with a developmental disability.'' See 42 U.S.C. 
15043(a)(2)(H) (access authority) and 42 U.S.C. 15043(c) (definition of 
``records''). The Act's use of this phrase confirms that P&As may serve 
persons residing in community settings so we also are deleting the 
definition of ``Community living arrangements.''
     The term ``full investigation'' has been revised to delete 
reference to ``facilities'' and ``clients'' to be replaced with the 
phrase ``individuals with developmental disabilities'' as all eligible 
persons are to have access to P&A services, not just those where a 
client relationship has been established.
     The definition of ``neglect'' has been revised to indicate 
that an individual perpetrating the act of neglect now must be 
responsible for providing ``services, supports or other assistance'' 
rather than an individual providing ``treatment or habilitation 
services.''
     The definition of ``probable cause'' has been revised. The 
proposed regulation indicates 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. The definition is not intended to 
affect the authority of the courts to review the determinations of P&As 
of whether probable cause exists.
     Additionally, a new definition of ``Service Provider'' has 
been proposed. The definition states, the term ``service provider'' 
refers to any individual (including a family member of an individual 
with a developmental disability), or a public or private organization 
or agency that provides, directly or through contract, brief or long-
term services, supports or other assistance to one or more individuals 
with developmental disabilities. Service providers include, but are not 
limited to, locations such as group homes, board and care homes, 
individual residence and apartments, day programs, public and private 
residential and non-residential schools (including charter schools), 
juvenile detention centers, hospitals, nursing homes, homeless 
shelters, and jails and prisons.
     A definition of ``State Protection and Advocacy system'' 
has been added to clarify that 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 Part C.
Section 1386.20 Agency Designated To Administer the State Protection 
and Advocacy System
    ADD is proposing to revise the title of section 1386.20 to Agency 
Designated To Administer the State Protection and Advocacy System from 
Designated State Protection and Advocacy Agency. The statute makes a 
distinction between the ``system'' which must be in existence and the 
agency implementing the system. See 42 U.S.C. 15043(a)(4). This phrase 
has been substituted throughout this section of the proposed rule as 
appropriate.
    ADD also is proposing to revise paragraph (e)(6) regarding 
redesignation to clarify that the P&A and the designating official will 
have an opportunity to respond to comments from agencies administering 
the Federal protection and advocacy program. Additionally, statutory 
citations have been updated for paragraphs (d)(2)(i) and (f)(2), and 
paragraph (d)(4) has been slightly edited.
Section 1386.21 Requirements and Authority of the State Protection and 
Advocacy System
    ADD is proposing to revise the title to include a reference to 
``State'' in relation to the Protection and Advocacy System for 
clarity. In paragraphs (a) and (f) we are proposing to update 
terminology and statutory cites. We are proposing two substantive 
changes. First, we propose to revise paragraph (c) to include 
additional language regarding prohibited State actions which would 
diminish or interfere with the exercise of the P&As required authority. 
Second, in order to ensure that the notice and the opportunity for 
comment is given to all individuals who might potentially be interested 
in commenting, ADD is proposing to revise paragraph (h) to indicate 
that prior to any Federal review of the State program, a 30-day notice 
and opportunity for public comment must be provided in the Federal 
Register.
    To improve organization of the regulation, ADD is proposing to 
redesignate current Sec.  1386.22 as section 1386.25 that would be 
included under a new subpart C. This section is discussed in more 
detail later in the preamble.
    Current section 1386.23 is proposed to be revised and redesignated 
as Sec.  1386.22, Periodic Reports: State Protection and Advocacy 
System.
    Under proposed section 1386.22 ADD is proposing to revise the title 
to include a reference to ``State'' in relation to the Protection and 
Advocacy System for clarity. ADD is proposing to revise paragraph (a) 
to address the requirements of Section 144(e) of the Act (42 U.SC. 
15044), the applicable regulations and include information on the 
system's program necessary for the Secretary to comply with Section 
105(1), (2), and (3) of the Act (42 U.S.C. 15005). Each system must 
report on its achievement of the measures of progress for the 
proceeding year pursuant to section 1385.5.
    ADD is proposing to revise paragraph (b) to clarify what financial 
report is required and that the report shall be submitted semiannually.
    ADD also is proposing to revise paragraphs (c) and (d) to update 
terminology, including converting references to ``Statement of 
Objectives and Priorities (SOP)'' to Annual Statement of Goals and 
Priorities (SGP). Under paragraph (c), we also are proposing to include 
language regarding each area of emphasis and the measure of progress 
(measures of consumer satisfaction, improvement, and collaboration) as 
provided under section 1385.5 of this part to measures goals. If 
changes are made to the goals or the measures 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. The description also must address 
collaboration, the reduction of duplication and overlap of services, 
the sharing of information on service needs,

[[Page 19715]]

and the development of statements of goals and priorities for the 
various advocacy programs. In addition, we are proposing that each 
Protection and Advocacy system be required to disclose in its SGP 
whether it will be requesting or requiring fees or donations from 
clients as part of the intake process. This new requirement is being 
proposed in order that the public will have notice of such a policy and 
an opportunity to comment on it as part of the process required under 
paragraph (d).
    Section 1386.24 Non-allowable costs for the State Protection and 
Advocacy System of the current regulations is proposed to be 
redesignated as section 1386.23. ADD is proposing to revise the title 
to include a reference to ``State'' in relation to the Protection and 
Advocacy System for clarity. We are republishing the full text of newly 
designated Sec.  1386.23, Non-allowable costs for the State Protection 
and Advocacy System for the ease of public comment. No changes are 
proposed to be made in this section.
    Finally, section 1386.25 Allowable litigation costs for the State 
Protection and Advocacy System, is proposed to be redesignated as 
section 1386.24. ADD is proposing to revise the title to include a 
reference to the ``State Protection and Advocacy System'' for clarity. 
We are republishing the remaining text for the ease of public comment.

Subpart C--Access To Records, Service Providers and Service Recipients

    ADD is proposing to create a new subpart C. This change is being 
proposed because of the increased level of importance and detail that 
accessing records of individuals with developmental disabilities plays 
in supporting the P&A system in investigating suspected cases of abuse 
and neglect. ADD also is proposing to make the regulation on access to 
records consistent, where applicable, with the PAIMI regulation 
referenced earlier (42 CFR part 51.41). The goal is to ensure that all 
facets of the P&A system administered by the Department are subject to 
the same legally supportable requirements. ADD is the lead agency that 
administers the P&A system and the DD Act establishes those 
requirements. Many of the changes reflect the new access authority 
language contained in 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 System's authority to 
investigate abuse and neglect and ensure the protection of rights. This 
broad interpretation of available records and reports also is 
consistent with the requirements of the PAIMI regulations.
    This NPRM addresses key provisions in subtitle C (42 U.S.C. 
15043)(a)(1); (2)(A), (H), (I), (J); and (c) Protection and Advocacy of 
Individual Rights, in the DD Act that pertain to P&As access to service 
providers, access to recipients of services (i.e., individuals with 
developmental disabilities) and access to records when incidents of 
abuse or neglect are suspected or reported, the health and safety of 
individuals with developmental disabilities are in jeopardy or are 
suspected of being in jeopardy, or in the case of a death of an 
individual with a developmental disability. In addition, the NPRM 
addresses provisions in Subtitle C concerning when consent for access 
to records from an individual with a developmental disability or the 
individual's guardian, conservator or legal representative is required 
and when it is not required. Moreover, the NPRM addresses provisions in 
Subtitle C that describe examples of the types of records to which a 
P&A shall have access. Given the obligation of P&As to conduct 
investigations of the incidences described here and in certain 
circumstances to contact an individual's guardian, conservator or legal 
representative, the Administration on Developmental Disabilities takes 
the position in this NPRM that a P&A shall have prompt access to 
contact information of such individuals. The law and this NPRM make 
distinctions about when a P&A will have access to records between 
``routine incidents'' and other incidents involving abuse, neglect, 
health, safety, or a death.
    The NPRM approach to addressing these key provisions are not only 
consistent with the DD Act but also consistent with the 2nd Circuit 
decision in ``State of Connecticut Office of Protection and Advocacy 
for Persons with Disabilities and James McGaughey, Executive Director, 
State of Connecticut, Office of Protection & Advocacy for Persons with 
Disabilities v. Hartford Board of Education, Hartford Public Schools 
and Robert Henry, Supt. Of School.''
    Consistent with the DD Act, the 2nd Circuit's decision, and the 
proposed definition of ``service provider'' elsewhere in this NPRM, 
when schools provide services to individuals with developmental 
disabilities, they must provide P&As with access to locations, 
individuals, and records under the conditions spelled out in the DD Act 
(42 U.S.C. 15043)(a)(1); (2)(A), (H), (I), (J); and (c)).
    Second, the 2nd Circuit decision and this NPRM track the DD Act, 
requiring 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 the DD Act, and 
therefore this NPRM makes no distinctions on the basis of age with 
regard to access an individual by the P&A.
    Third, the 2nd Circuit in its decision and this NPRM recognize that 
the charge to P&As is to engage in a range of activities--protect the 
legal and human rights of individuals with developmental disabilities 
and monitoring for incidents of abuse or neglect and the health and 
safety of individuals with developmental disabilities. Thus, a P&As 
work does not end when it investigates and brings to closure a specific 
incident of abuse or neglect or risk to health and safety. We interpret 
the DD Act as providing P&As with the authority to pro-actively monitor 
situations where abuse and neglect or risks to health and safety may 
occur. We believe this NPRM outlines reasonable parameters for which 
P&As may have access to individuals with developmental disabilities, 
their records, their service providers, and the locations where 
services are provided to them, even under non-emergency situations 
(i.e., those not involving 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).
    Fourth, this NPRM and the DD Act 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 should be provided no later 
than within 24 hours (42 U.S.C. 15043(a)(2)(J)(ii)). The 2nd Circuit in 
its decision recognizes and cites the DD Act as having special 
conditions (noted here) when an emergency situation is the issue ( 
i.e., those involving 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).
    Fifth, the 2nd Circuit, the DD Act (at 42 U.S.C. 
15043(a)(2)(I)(iii)(III)-(V)), and this NPRM recognize the importance 
of having contact information when P&As are conducting investigations. 
As such, and consistent with the 2nd Circuit, this NPRM proposes to 
require that P&As

[[Page 19716]]

have access to contact information when conducting an investigation. In 
incidences of suspected or reported abuse or neglect (when such 
incidents have been reported or good cause has been shown), risks to 
health and safety, or in the case of a death of an individual with a 
developmental disability, timing is a vital factor. Service providers 
should maintain up-to-date contact information for individuals with 
developmental disabilities, and parents, guardians, legal 
representatives, or conservators for individuals with developmental 
disabilities. In the situations noted here, when asked by a P&A for 
this contact information, a service provider should provide the 
information immediately.
    As indicated previously, section 1386.22 is proposed to be 
redesignated and renamed section 1386.25 Access to Records. We are 
proposing to revise section 1386.25(a)(3), as redesignated, to 
incorporate monitoring activities and changing reference to ``health 
and safety'' to ``abuse or neglect.'' In paragraph (3)(i), we propose 
to add a requirement for disclosure of the name and address of a 
representative be given to the P&A promptly. ADD believes that it is 
critical to the investigative function that P&As be given access to the 
names of representatives promptly. This requirement prevents undue 
delay in the P&As' intervention in the prevention of further abuse and 
neglect. Paragraphs (a)(2)(iii) and (3)(ii), as redesignated, are 
republished with slight edits. Paragraph (3)(iii) has been changed to 
read, ``the representative has failed or refused to act on behalf of 
the individual.''
    We also are proposing to make changes to section 1386.25(b) as 
redesignated. In paragraph (b)(1) we propose to delete reference to 
``supportive'' and refer instead to ``supports or assistance'' and 
``service provider'' to be consistent with the Act. The language 
regarding reports available to the P&A is based on Congress' intent to 
ensure access to records to promote the System's authority to 
investigate abuse or neglect and ensure the protection of rights. The 
remainder of paragraph (b) has been revised to reflect editorial 
changes.
    ADD also is proposing to revise paragraph (c) of this section to 
reflect new authority contained in the DD Act of 2000. Specifically, 
the second sentence of (c)(1) proposes language related to access to 
the records of a deceased person without any showing of probable cause, 
and is based on our interpretation of 42 U.S.C. 15043 
(a)(2)(J)(ii)(ll). The provision also requires that a P&A have access 
to records of an individual with a developmental disability within 24 
hours of the P&A's written request when the P&A has probable cause to 
believe that the individual is in serious and immediate jeopardy. In 
the case of a deceased individual or where the P&A has probable cause 
to believe the individual is in serious and immediate jeopardy, the 
consent of another party is not necessary for access to the records. 
ADD is also proposing to set a standard in the regulation for 
determining whether a decedent had a developmental disability. The 
proposed regulation provides: ``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 purposes of the P&A's obtaining access to the individual's 
records, be deemed an individual with a developmental disability.'' The 
purpose of this proposal is to simplify the task of P&As in 
establishing that the decedent was an individual with a development 
disability. Proving that the functional definition of the developmental 
disability which appears in Section 102(8) of the Act applies to a 
living person can be difficult; it will be all the more difficult to 
prove its application to an individual who is no longer living. In 
making this proposal ADD is seeking to avoid making access to the 
records of a deceased individual so difficult that the intent of 
Congress in enacting Section 143(a)(2)(J)(ii)(II) of the Act would be 
frustrated.
    ADD is proposing to remove all of section 1386.25(e) as 
redesignated and consolidate the provisions into section 1386.28(e), 
discussed later in this preamble.
    Proposed section 1386.25(d) addresses the remaining provisions 
regarding sharing and copying of records. This paragraph proposes, ``If 
the organization or agency having possession of the records copies them 
for the P&A system, it may not charge the P&A system an amount that 
would exceed the amount it customarily charged other non-profit or 
State government agencies for reproducing documents.'' These revisions 
also will make this new section consistent with the PAIMI regulation. 
The PAIMI regulation states (42 CFR 51.41) that the P&A system may not 
be charged for copies more than is ``reasonable'' according to 
prevailing local rates, and 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. Many service providers 
have tried to impose excessive costs on P&As for copies as a means of 
obstructing access. The above clarifications are necessary to prevent 
this from occurring. Also the clarification on the time frame during 
which copies of records mu