Notice of proposed rulemaking (NPRM).
Developmental Disabilities Program
DEPARTMENT OF HEALTH AND HUMAN SERVICES
45 CFR Parts 1385, 1386, 1387, and 1388
RIN 0970-AB11
This rule proposes clarifications and new requirements to implement the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act of 2000). Notice of proposed rulemaking (NPRM) [Issued April 10, 2008 Federal Register: April 10, 2008 (Volume 73, Number 70)]
[Federal Register: April 10, 2008 (Volume 73, Number 70)]
[Proposed Rules]
[Page 19707-19741]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr10ap08-15]
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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
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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: http://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: http://www.regulations.acf.hhs.gov or http://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.
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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.
- 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:
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(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).
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.
- 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.
- 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.
- 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.
- 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:
| Children with developmental disabilities are included in preschool programs. | Number of children with developmental disabilities in Head Start programs will increase by 10%. | Present information to Head Start directors on number of children with developmental disabilities waiting for inclusive preschool programs. Attend meetings of Head Start directors to outline issues and barriers. Convene meeting of Head Start directors and DD Act network to develop plan of action. | Train parents on legal rights of children with developmental disabilities to participate in preschool programs. Include information on accessibility, ADA, assistive technology, etc. | Train Head Start providers on inclusion of children with developmental disabilities in the classroom. Follow up to determine actual increase in number of children included. |
- 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
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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.
- 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.
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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.
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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.
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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.
Subpart A--Basic Requirements
Section 1386.1 General
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The NPRM proposes technical changes to Sec. 1386.1 to update the
terminology.
-
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.
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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.
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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.
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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.
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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 must be provided to P&As is necessary to avoid the frequently long delays in this regard. Often it is the service provider and not the P&A which makes the copies of the requested records. Prompt access for the P&A to inspect records is of little assistance in its investigation if copies of the records themselves are not provided quickly.
In Sec. 1386.25(d) it is not the intent of ADD that the requirement for P&As to have a right to use their own equipment for copying be used to require that organizations being investigated allow P&As to remove records from the organization's premises to make the copies. The remaining provisions of 1386.25 as redesignated, ((current regulations section 1386.22 (f), (g), (h) and (i)), are proposed to be incorporated into new Sec. Sec. 1386.26 and 1386.27 as discussed below.
ADD is proposing a new section 1386.26 named "Denial or Delay of Access." This section parallels the PAIMI regulation at 42 CFR 51.43. Under this paragraph, P&As must be able to obtain the identities of service recipients from service providers (who have control of this information). The confidentiality of such P&A records as proposed are protected under other provisions of this regulation. In emergency situations or in the case of a service recipient's death, section 143(a)(2)(J)(ii) of the DD Act provides P&As with access to records of service recipients within 24 hours after written request is made and without consent. In that vein, we propose a one-business day deadline for providing the written justification denying access. ADD believes that such standards are necessary in recognition of the consequences of not accessing individuals quickly 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.
Section 1386.26 concludes with a description of the information that should be included in the justification denying access. This provision is contained in current regulations at 1386.22(i).
ADD is proposing a new section 1386.27 Access to Service Providers and Service Recipients to replace section 1386.22(f) of the current regulations. Under this section, the term "service provider" is substituted throughout for the term "facility." The language
[[Page 19717]]
otherwise remains the same except for editorial changes. We are proposing changes under (b)(1) through (3) to address the times and circumstances under which access shall be afforded. This language is consistent with the PAIMI regulation (62 FR 53561-62).
In this NPRM, we propose that P&A systems should not be required to provide notice to a service provider when they are coming to investigate 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. However, P&As should give notice when it will be visiting a service provider as part of an investigation in non-emergency situations (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).
ADD is proposing that P&A systems should have the right to access service providers "all times necessary * * *" to conduct a full investigation, and particularly when the system has determined "probable cause" that there is or may be imminent danger of serious abuse or neglect of an individual. ADD believes that immediate access is necessary with respect to service providers to permit P&As to uncover situations that may involve immediate threats to health or safety. It also is necessary to prevent interested parties from concealing situations involving abuse or neglect or taking actions which may compromise evidence related to such incidents (such as intimidating staff or service recipients).
To address this, ADD is proposing a new subsection 1386.27(c) which replaces section 1386.22(g) of the current regulation. We are proposing to add new language in paragraph (c) to read, "A P&A also shall be permitted to attend treatment planning meetings concerning individual service recipients with the consent of the individual or his or her guardian, conservator or other legal representative. Access to facilities shall be afforded immediately upon an oral or 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 within 24 hours of the system's making a request. If the P&A's 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. Service recipients subject to the requirements in this paragraph include adults or minors who have legal guardians or conservators. P&A activities shall be conducted so as to minimize interference with service provider programs, respect service recipients' privacy interests, and honor a recipient's request to terminate an interview." Under the proposed rule, such access is for the purpose of:
(1) 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;
(2) Monitoring compliance with respect to the rights and safety of service recipients; and
(3) Inspecting, viewing and photographing all areas of a service provider's premises which are used by service recipients or are accessible to them.
ADD is proposing 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 service recipients. The limitation related to individual/guardian consent would provide an appropriate safeguard concerning privacy. Consent of other individuals who may be receiving treatment or services at the same location (for example, group therapy situations) will be tied to the policies of the premises where the care is being provided.
The ADD proposed regulations support the PAIMI Act regulation. For example, such access is 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). Based on this statement (and in the interest of assuring consistency with the PAIMI Program), the P&A also should be authorized to attend treatment team meetings, which serve some of the same purposes as discharge planning sessions. The DD Act and its case law generally support extremely broad access to individuals to monitor conditions relating to safety and health. We interpret these authorities, then, to generally support treatment team access; as such access is an important strategy in monitoring the adequacy of health care.
We are further proposing to move section 1386.22(h) in the current regulation to section 1386.27(d) in the proposed regulation. Changes proposed are only editorial.
Similar to the approach used in the PAIMI regulation at section 42 CFR 51.45, ADD is proposing to incorporate in a new section 1386.28, Confidentiality of Protection and Advocacy Systems Records. This section will replace the current ADD regulation in 45 CFR 1386.22(e), Access to Records, Facilities and Individuals that deals with P&A access authority. Because the confidentiality provisions relate to a broad range of client information, and not only materials obtained through the P&A's access authority, it is more appropriate to address the issues in a separate, dedicated section of the regulation. ADD also proposes that the new provision on confidentiality be modeled after the existing provision on this subject in the PAIMI regulation at 42 CFR 51.45, with certain alterations. Paragraph (a) and (a)(1) of section 1386.28 as proposed mirror the existing provisions (1386.22(e) and (e)(3)) with editorial changes. Paragraphs (a)(1)(i), (ii), (iii) and (iv) contain new language to clarify that the P&A must keep confidential--records and information, in any automated electronic database pertaining to clients; individuals who have been provided general information or technical assistance on a particular matter; 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 names of individuals who have received services; and names of individuals who have received services, supports or other assistance, and who provided information to the P&A for the record. Paragraph (a)(2) remains the same as current regulations (1386.22(e)(2)). Paragraph (a)(2) requires the P&A systems to have written policies governing the access, storage, duplication and release of information from client records. Paragraph (a)(3) as proposed requires the P&A system to obtain written consent from the client and/ or various other individuals, before releasing information on such individuals to individuals not authorized to receive such information.
Proposed paragraphs (b) and (c) reflect the critical need for P&As to disclose to other investigative and enforcement agencies information about ongoing or potential abuse and neglect and specific individuals affected. Frequently, a P&A will uncover, as part of its own investigation or monitoring efforts, information about abuse and
[[Page 19718]]
neglect which must be addressed promptly by other agencies with specialized State or Federal authority and/or greater resources, such as State licensing and certification agencies, the Department of Justice, and the police. In order for these agencies to act promptly and effectively, they must be provided specific information about individuals subject to abuse or neglect and the relevant circumstances. We recommend that such information be disclosed where possible with significant restrictions on redisclosure and only under those circumstances in which the P&As have obtained the information pursuant to the authority under the DD Act.
The NPRM 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.
In Sec. 1386.30, State plan requirements, we are proposing in paragraph (c) that the State plan must be submitted through the Electronic Data Submission system rather than any other format. In paragraph (c)(2) new language on the plan goals is being proposed. The goals must be clearly expressed in terms of the area(s) of emphasis to be covered, the types of activity to be undertaken (i.e., advocacy, capacity building, systems change), the specific measures of progress to be used (consumer, collaboration, improvement), and if applicable, and not reflected otherwise, the extent to which unserved or underserved individuals or groups, particularly from ethnic or racial groups or geographic regions (e.g., rural) were the target of assistance or services (see Section 125(c)(7) and Section 105(1)(C) of the Act).
Paragraph (c)(3) proposes that the plan provide for the establishment and maintenance of a Council and describe the membership of the Council. This includes the requirement that the non-State agency members of the Council shall be subject to term limits to ensure rotating membership. Paragraph (d) proposes to require that the State plan be updated as appropriate during the five-year plan period and specifies that amendments to plans are required when substantive changes are made, including changes under proposed paragraph (c)(2) related to performance activities. In paragraph (e) we are proposing time limits (no longer than five years) for demonstration projects and activities performed by the Councils. A five-year time limit has been established to coincide with the duration of the State plan. Paragraph (a) is republished with updated statutory citations, and paragraphs (b) and (f) are republished with updated statutory citations and editorial changes.
In Sec. 1386.31 State plan submittal and approval, we are proposing to revise paragraph (b) to require that the plan be submitted to ADD rather than the appropriate regional office. Also, we are proposing to revise the provision which requires the Governor or the Governor's designee approval of the State plan or amendment. The regulation proposes that the State plan or amendment must be approved by the entity or individual authorized to do so under State law. This requires States to determine who would approve the State plan or amendment, which could be the Council, the Governor or the Governor's designee. This authorization could be based on such actions as: executive orders, proclamations, State statute, common law, or the State constitution. In paragraph (c) we are proposing to indicate that 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. Paragraphs (a) and (d) are proposed to be republished without change.
In Sec. 1386.32, Periodic reports: Federal assistance to State Developmental Disabilities Councils, we are proposing to revise the title to read Sec. 1386.32 Periodic reports: Federal assistance to State Councils on Developmental Disabilities. ADD is proposing to revise paragraph (a) to clarify what financial report is required and that the report shall be submitted semiannually. In Sec. 1386.32(b) the reference to a statutory cite is proposed to be updated and language is revised to clarify that State Council's Program Performance Report (PPR) must be clearly expressed in terms of area(s) of emphasis to be covered, the types of activity to be undertaken (i.e., advocacy, capacity building, systems change), the measures of progress to be used, and if applicable, and not stated elsewhere in the document, the extent to which unserved or underserved individuals or groups, particularly from ethnic or racial groups or geographic regions (e.g., rural), were the target of assistance or services (see Section 125(c)(7) and Section 105(1)(C)). Under paragraphs (b)(1)-(12), each report must contain information about the progress made by the Council in achieving its goals. In new section 1386.32(c) each State Council on Developmental Disabilities must include in its Annual Program Performance Report information on its achievement of the measures of progress established pursuant to section 1385.5.
Section 1386.33, Protection of employee's interests, is revised to update statutory cites and to provide clarity.
Section 1386.34, Designated State Agency, is revised to update statutory cites and technical changes are made to provide clarity.
Section 1386.35, Allowable and non-allowable costs for Federal Assistance to State Councils on Developmental Disabilities, is proposed to be revised to update statutory cites with technical changes to provide clarity.
Section 1386.36, Final disapproval of the State plan or plan amendments, is revised to update statutory cites, remove references to the HHS Regional Offices, and contains slight editorial changes.
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, is being revised to make technical changes and is republished in full.
Specifically under the General section, in section 1386.80 Definitions, we are proposing to add the terms Act and Department. In section 1386.81, Scope of rules, we have updated the legal cites. No changes are proposed to section 1386.82-1386.85 but these sections are republished for the ease of public comment. Under the section on Preliminary Matters--Notice and Parties, section 1386.90 is proposed to be revised to update references to the State Councils on Developmental Disabilities. Section 1386.91-1386.94 are proposed to be republished unchanged. Under Hearing Procedures, sections 1386.100-1386.109 are republished with technical edits made to sections 101 and 106. Finally under the section on Post-hearing Procedures and Decisions, no change is proposed to section 1386.110 but it is being republished for the ease of public comments and sections 1386.111-1386.112 have been revised to update legal cites.
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In Sec. 1387.1 General Requirements ADD is proposing to revise
paragraph (a) to indicate that all projects funded under this part must
be of national significance and serve or relate to individuals with
developmental disabilities to comply with section 161 of the Act as
well as section 162 of the Act. We are proposing to remove the current
regulatory language of paragraph (b) as the requirement for the
Secretary to publish the proposed priorities for PNS funding in the
Federal Register for
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public comments is no longer required under the Act. Current regulatory language of paragraph (c) will now become paragraph (b), indicating that the requirements concerning format and content of the application, submittal procedures, eligible applicants, and final priority areas will be published in program announcements in the Federal Register. Current regulatory language of paragraph (d), with minor edits, will now become paragraph (c), indicating that in general, Projects of National Significance provide technical assistance, collect data, demonstrate exemplary and innovative models, disseminate knowledge at the local and national levels, and otherwise meet the goals of Part E of the Act, 42 U.S.C. 15081.
As the DD Act provided several new types of activities allowable under Projects of National Significance we are proposing in paragraph (d) to indicate that Projects of National Significance may engage in one or more of the types of activities provided in Section 161(2) of the statute.
As provided under new paragraph (e), funding for projects are to be awarded to public and private non-profit entities for wide applicability and impact. A request for proposal process shall solicit applications from non-profits, institutions of higher learning, State and local governments, and Tribal governments for PNS funding.
As provided under new paragraph (f), faith-based organizations are eligible to apply for PNS funding, providing that the faith-based organization meets the specific eligibility criteria contained in the Program Announcement for a given Fiscal Year.
Program Announcements, requesting proposals, are published in the Federal Register and posted on ADD's Web site at http://www.acf.dhhs.gov/programs/add. A panel of experts shall review and score each eligible application, received by the submission deadline, based on the evaluation criteria in the Program Announcement. Final funding decisions are made by the ADD Commissioner.
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The Notice of Proposed Rulemaking for the UCEDDs includes a number
of changes to part 1388. The DD Act of 2000 included a significant
restructuring of subtitle D--National Network of University Centers for
Excellence in Developmental Disabilities Education, Research, and
Service. These changes have led to a proposed reorganization of the
regulation.
First, section 1388.1, Definitions, has been changed to Purpose. Several of the terms under the proposed rule appear in proposed Sec. 1385.3 of the regulation and other terms were removed from the DD Act of 2000 and therefore are no longer needed in the regulation. In the case of the term "Mandated Core Functions", these are now more clearly defined under section 1388.2. In addition, "Research and Evaluation" is included as a Core Function separate from dissemination of information. Both are included and described in Sec. 1388.2 of the proposed regulation. Section 1388.1 Purpose, as proposed provides information about the Centers, including their intended functions.
Sections 1388.2-1388.7 of the current regulation provides information about `Program Criteria' for the UCEDDs in the following areas: Purpose, Mission, Governance and Administration, Preparation of Personnel, Services and Supports, Dissemination, and Peer Review. The DD Act of 2000 deleted the provisions specifically associated with the `Program Criteria' and the proposed changes to the regulation are necessary to make it consistent with the DD Act of 2000.
The title of section 1388.2 has been changed to Core Functions. The DD Act of 2000 now refers to Core Functions of Centers. This section proposes to provide information about Core Functions, including the provision of interdisciplinary pre-service preparation and continuing education of students and fellows, provision of community services, the carrying out of research, and dissemination of information.
The title of section 1388.3 has been changed to National Training Initiatives on Critical and Emerging Needs. Centers have discretion in selecting the activities they will pursue within the broad definition of their purpose in the statute and therefore the current regulation which defines the mission of the Centers as a group is not needed. ADD proposes that revised section 1388.3 contain information about the National Training Initiatives on Critical and Emerging Needs, which replaces the Training Initiative Projects (TIPs) that appear in the current regulation. Under this section, supplemental grant funds for National Training Initiatives on Critical and Emerging Needs will be reserved when each Center funded has received a grant award of at least $500,000, adjusted for inflation. The critical and emerging needs grants are to pay the Federal share of the cost of training initiatives and will be awarded on a competitive basis for periods of not longer than 5 years.
The title of section 1388.4 Program Criteria--Governance and Administration, has been changed to Applications and provides information about a Center's eligibility for grant awards through applications as well as required application contents such as the five- year plan describing the projected goal(s) related to one or more areas of emphasis for each of the core functions; a number of assurances, including how the Center will address the projected goals, carry out goal-related activities, collaborate with the consumer advisory committee comprised of a cross-section of stakeholders (e.g., individuals with developmental disabilities and related disabilities, family members of individuals with developmental disabilities, a representative of the State Protection and Advocacy System, a representative of a self-advocacy organization, and representatives of other relevant organizations), strategies for leveraging additional public and private funds, director qualifications, and plans for information dissemination. The applications section also includes reference to the measures of progress, which now represent the regulatory standards for the Centers. The program criteria of the current regulation had been the basis for such standards. In addition, the Applications section proposes to include information about the peer review process, including the composition of the peer review groups. Finally, information about the Federal Share under the proposed rule is provided in the Applications section of the regulation. For the purpose of determining the Federal share with respect to the project, expenditures on that project by a political subdivision of a State or by a public or private entity shall be subject to the provisions of 45 CFR part 93--New Restrictions on Lobbying (see section 1385.9 Grants administration) and must be considered as an expenditure of the Center under subtitle D.
Section 1388.5 of the proposed rule has been revised to address the five-year plan and annual report. Provisions on `Program Criteria-- Preparation of Personnel' are no longer needed in this section because of changes in the DD Act of 2000 and changes made in other sections of this proposed rule. Under the proposal, section 1388.5 addresses the five-year plan and annual report and includes requirements for Centers to report on their progress. The Annual Report must be submitted by July 31st of each year and include information on the progress made in achieving the
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projected goals, proposed revisions to the goals, and a description of successful efforts to leverage funds. The timeframe for the Annual Report is tied to the UCEDDs fiscal and reporting cycle. The five-year plan must be amended to reflect changes made to the measures of progress established for any year.
We propose to delete the remaining paragraphs in section 1388 to reflect the DD Act of 2000 and changes made elsewhere in the proposed rule.
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The Administration on Developmental Disabilities presents 45 CFR
parts 1385, 1386, 1387, and 1388 as an amended whole in response to
numerous requests by direct consumers, family members of individuals
with developmental disabilities, members of advocacy organizations, and
the Developmental Disabilities Network. Reprinting the regulation in
its entirety to include the proposed new regulations and the current
regulation will assist these individuals in responding to the proposed
rule, especially the proposed measures of progress.
Executive Order 12866
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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
proposed 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 proposed rule seeks to implement the Developmental Disabilities Act of 2000 and especially provisions of the Act addressing program accountability and indicators of progress. In developing this regulation, we considered input we received from the developmental disabilities community, especially in relation to our extensive discussion on the issue of performance outcomes with 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). In addition, we are providing a 60 day public comment period.
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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, State Protection and Advocacy Systems, and
UCEDDs. P&As are administered by small nonprofits. This regulation will
support the work of the P&As by providing guidance regarding access to
service providers and records of individuals in order to investigate
potential abuse and neglect. 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 of the
program, especially the measures of progress, which now represent the
regulatory standards for the UCEDDs. The regulation does not have a
significant economic impact on these entities. We estimate an average
impact of $300 per grantee, resulting in a total cost across the DD
network of less than $100,000.
This rule is considered a "significant regulatory action" as it relates to service providers and the P&As. If a complaint is made against a service provider and the P&A investigates potential abuse and neglect, it may result in adversely affecting those service providers in a material way, (section 3(f)(1) of Executive Order 12866). Therefore, this proposed regulation has been reviewed by the Office of Management and Budget.
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Sections 1386.22, 1386.32, and 1388.5 contain information
collection requirements. In Section 1386 of the NPRM, the State Council
on Developmental Disabilities Program Performance Report and the
Protection and Advocacy Statement of Goals and Priorities required
reinstatement from OMB. Further changes to these reports will be
required once the indicators of progress are established through final
regulations. For the Protection and Advocacy Program Performance Report
in Section 1386 of the NPRM, the OMB Standard Form--PPR will be used.
Recordkeeping and reporting requirements for the UCEDDs (Part 1388) include the submission of an approved grant application (section 154(a)(2) of the Act (42 U.S.C. 15064)) and a new annual report (section 154(e)). The application for core funding uses OMB Standard Form 424--Application for Federal Assistance and Budget Information. The annual report will require a new reporting format that will address the satisfaction of individuals with developmental disabilities with advocacy, capacity building, and systemic change activities; the extent to which the advocacy, capacity building, and systemic change activities provided results through improvements; and the extent to which collaboration was achieved in the areas of advocacy, capacity building and systemic change activities.
Reporting and Recordkeeping Requirements In Part 1386 and 1388 of the NPRM
| 1386.22(a) SF-PPR 0970-0334 |
06/30/2009 | 57 | 44 | 2,508 |
| 1386.22(c) P&A SGP Reinstatement 0980-0270 |
11/30/2009 | 57 | 44 | 2,508 |
| 1386.30(c) Council State Plan 0980-0162 |
05/31/2009 | 55 | 80 | 4,400 |
| 1386.32(b) Council PPR Reinstatement 0980-0172 |
02/28/2009 | 55 | 44 | 2,420 |
| 1386 32(a) Council Financial Status Report (ADD-02B): ADD-02 Council 0980-0212 |
05/31/2009 | 55 | 8 | 440 |
| 1388.5(b) UCEDD Annual Report 0970-0289 |
08/31/2008 | 67 | 200 | 13,400 |
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The Administration for Developmental Disabilities will consider
comments by the public on these collections of information in the
following areas:
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(a) Evaluating whether the proposed collection(s) is (are)
necessary for the proper performance of the functions of ADD, including
whether the information will have practical utility;
(b) Evaluating the accuracy of the ADD's estimate of the burden of the proposed collection(s) of information, including the validity of the methodology and assumptions used;
(c) Enhancing the quality, usefulness and clarity of the information to be collected; and
(d) Minimizing the burden of the collection of information on those who are to respond, including through the use of appropriate automated, electronic, mechanical, or other technology, e.g., permitting electronic submission of responses.
OMB is required to make a decision concerning the collection(s) of information contained in these proposed regulations between 30 and 60 days after publication of this document in the Federal Register. Therefore, a comment is best assured of having its full effect if OMB receives it within 30 days of publication. This does not affect the deadline for the public to comment to the Department on the NPRM. Written comments to OMB for the proposed information collection should be sent directly to OMB either by FAX to 202-395-6974 or by e-mail to OIRA_submission@omb.eop.gov, attn: desk officer for the Administration for Children and Families.
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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 and 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 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 proposed rule.
We have 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.
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This rule is not a major rule as defined in 5 U.S.C.Sec. 804(2).
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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.
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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.
ADD 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. ADD would welcome comments from any State whose laws would be in conflict with the requirements of the proposed regulation or whose laws require modification to establish compliance with requirements of the proposed regulation, States should alert ADD in their comments of the specific provisions of the NPRM that would require delay in the effective dates in order to bring State laws into conformance. ADD will consider delaying the effective date of some provisions in the final regulation if States must modify legislation or enact new legislation to bring their laws into conformance with the new regulation. The rule does not impose unfunded mandates.
This proposed rule does contain regulatory policies with federalism implications that require specific consultation with State or local elected officials. For example, compliance with the indicators of progress is mandatory for State programs. However, prior to the development of the rule, the Administration on Developmental Disabilities consulted with State Developmental Disabilities Councils, P&As, and UCEDDs to minimize any substantial direct effect on them and indirectly on States.
45 CFR Part 1385
- Disabled, Grant programs/education, Grant programs/social programs,
Reporting and recordkeeping requirements.
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Disabled, Administrative practice and procedures, Grant programs--
education, Grant programs--social programs, Reporting and recordkeeping
requirements.
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Administrative practice and procedure, Grant programs--education,
Grant programs--social programs, Individuals with disabilities.
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Colleges and Universities, Grant programs/education, Grant
programs/social programs/University Centers for Excellence in
Developmental Disabilities Education, Research and Services.
(Catalog of Federal Domestic Assistance Program, Nos. 93.630 Developmental Disabilities Basic Support and 93.632 Developmental Disabilities--University Centers for Excellence)
Dated: November 20, 2007. Daniel C. Schneider, Acting Assistant Secretary for Children and Families.
Approved: November 26, 2007. Michael O. Leavitt, Secretary, Department of Health and Human Services.
Editorial Note: This document was received at the Office of the Federal Register on April 3, 2008.
For reasons set forth in the preamble, The Department of Health and Human Services proposes to amend subchapter I, chapter XIII, of title 45 of the Code of Federal Regulations as set forth below. 1. Revise part 1385 to read as follows:
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Section Contents
Sec.
[[Page 19722]]
1385.1 General.
1385.2 Purpose of the regulations.
1385.3 Definitions.
1385.4 Rights of individuals with developmental disabilities.
1385.5 Program accountability and indicators of progress.
1385.6 Employment of individuals with disabilities.
1385.7 Reports to the Secretary.
1385.8 Formula for determining allotments.
1385.9 Grants administration requirements.
Authority: 42 U.S.C. 15001 et seq.
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Except as specified in Sec. Sec. 1385.4 and 1385.5, 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 of Individual Rights;
(c) Projects of National Significance; and
(d) National Network of University Centers for Excellence in Developmental Disabilities Education, Research, and Service.
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These regulations implement the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15001 et seq.).
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The following definitions apply:
ACF. The term "ACF" means the Administration for Children and Families within the Department of Health and Human Services.
Act. The term "Act" means the Developmental Disabilities Assistance and Bill of Rights 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 45 CFR part 84 and the Americans with Disabilities Act of 1990.
ADD. "ADD" means the Administration on Developmental Disabilities, within the Administration for Children and Families.
ADD Network. "ADD Network" means the State Councils on Developmental Disabilities, the Protection and Advocacy System, and the University Centers for Excellence in Developmental Disabilities Education, Research, and Service.
Advocacy activities. The term "Advocacy activities" means active support of policies and practices that promote self-determination and inclusion in the community and workforce 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 maintain, increase amount of or improve quality of the 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 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, serve, 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 a system for sustaining and expanding the successful delivery of services, support and other assistance to individuals with developmental disabilities and their families.
Center. The term "Center" means a University Center for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD) established under subtitle D of the DD Act of 2000.
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.
Collaboration. The term "collaboration" means the use of interagency agreements and similar mechanisms by agencies under the Act (State Developmental Disabilities Councils, the Protection and Advocacy agencies and the University Centers for Excellence in Developmental Disabilities Education Research, and Service). These agencies may work among themselves and with private individuals, groups, and organizations and State and local government agencies to foster cooperation in achieving the purposes of the Act.
Commissioner. The term "Commissioner" means the Commissioner of the Administration on Developmental Disabilities, Administration for Children and Families, Department of Health and Human Services, or his or her designee.
Culturally competent. The term "culturally competent," 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," as determined on a case by case basis, 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--
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(i) Self-care;
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(ii) Receptive and expressive language;
(iii) Learning;
(iv) Mobility;
(v) Self-direction;
(vi) Capacity for independent living; and
(vii) Economic self-sufficiency.
(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 (A)(1) through (5), 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," 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 of their own choice; live in homes close to community resources with regular contact with individuals without disabilities in their communities; enjoy full access 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 as individuals without disabilities, living, learning, working, and enjoying life in regular contact with individuals without disabilities.
Indicators of progress. The term "indicators of progress" means the grantee's compliance with its own self-selected, ADD approved, measures of progress.