The Developmental Disabilities Act
Released: 2010-11-12T00:00:00

Background

The Developmental Disabilities Assistance and Bill of Rights Act (DD Act) provides federal financial assistance to states and public and nonprofit agencies to support community-based delivery of services to persons with developmental disabilities (DD). The aim of the programs established by the DD Act is to help persons with DD maximize their work potential, facilitate their ability to live independently, and foster their integration into the community. The protection of the legal rights of individuals with DD is another major objective of the DD Act. Current law encourages coordination and collaboration among the State Councils on Developmental Disabilities (SCDDs), various independent living centers, and its state Protection and Advocacy (P&A) programs to support the legal rights of individuals with DD. Although the DD Act does not provide direct services, its programs are intended to plan and better coordinate the delivery of services and to advocate on behalf of individuals with DD. The Administration on Developmental Disabilities (ADD), part of the Administration for Children and Families (ACF) in the Department of Health and Human Services (HHS), is the federal agency that oversees all DD Act programs.

The DD Act was originally Title I of the Mental Retardation Facilities and Community Mental Health Centers Construction Act of 1963 (P.L. 88-164). It was renamed the Developmental Disabilities Assistance and Bill of Rights Act by P.L. 95-602 in 1978, and was completely reorganized by P.L. 98-527 in 1984. Congress last reauthorized the DD Act ( P.L. 106-402 ) in 2000. Authorizations of appropriations for the DD Act programs expired at the end of FY2007, although Congress has continued to provide appropriations for the programs. Legislation to reauthorize the DD Act has not been introduced in the 111 th Congress.

Based on data from the U.S. Census Bureau, there are an estimated 4.6 million individuals with developmental disabilities in the United States. Although the term "developmental disability" originally specified disabling conditions such as mental retardation and cerebral palsy, the current definition is based on functional limitations that manifest prior to adulthood. Section 102(8)(A) of the DD Act defines "developmental disabilities" as

"a severe, chronic disability of an individual that (i) is attributable to a mental or physical impairment or combination of mental and physical impairments; (ii) is manifested before the individual attains age 22; (iii) is likely to continue indefinitely; (iv) results in substantial functional limitations in 3 or more of the following areas of major life activity: (I) Self-care. (II) Receptive and expressive language. (III) Learning. (IV) Mobility. (V) Self-direction. (VI) Capacity for independent living. (VII) Economic self-sufficiency; and (v) reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated."

The DD Act also specifies that "an individual from birth to age 9, inclusive, who has a substantial developmental delay or specific congenital or acquired condition, may be considered to have a developmental disability without meeting 3 or more of the criteria described ... if the individual, without services and supports, has a high probability of meeting those criteria later in life."

Without appropriate services and supports, the choices open to some people with DD, including where they live, work, and play, may be minimal. Many may be isolated rather than fully integrated and included in the mainstream of society. Others may require individually planned and coordinated services and supports (e.g., housing, employment, education, civil and human rights protection, health care) from many providers in order to live in the community.

This report describes the major programs authorized under Title I of the DD Act. Federal funds for these programs are used to help state governments, local communities, and private sector organizations provide health care services, educational opportunities, P&A, and employment training to persons with developmental disabilities. A list of P&A programs and their respective administering agencies is provided in Table 1 . A funding history for each of these programs is included in Table 2 . Table A -1 and Table A -2 in Appendix A detail allotments for SCDDs and for P&A programs, respectively, by state and U.S. territory. Appendix C lists the full names of the acronyms used in this report.

DD Act Programs

State Councils on Developmental Disabilities

Each state and U.S. territory receives federal funding to establish a SCDD, which is expected to develop and implement a comprehensive statewide plan for delivering services to individuals with DD—and their families—especially those not otherwise served under existing health and welfare programs. Members of a state's Council are appointed by the governor and must be geographically, ethnically, and racially representative of the state as a whole. At least 60% of the members of the Council must be individuals with DD, immediate relatives of persons with a DD, or legal guardians to such individuals. Representatives from relevant state agencies are also required to sit on each SCDD. SCDDs are given wide latitude to use the DD Act funding they receive. Each is permitted to engage in advocacy activities that promote independent living and social integration. These efforts may include, but are not limited to

training, technical assistance, barrier elimination, coalition development and citizen participation, informing policymakers, advocacy, capacity building and systems change, and demonstration of new approaches to services and supports.

Funds are allotted to states and territories based on population, the need for services for individuals with DD, and the financial need of each state or territory (see Appendix A , Table A -1 ). The DD Act of 2000 ( P.L. 106-402 ) amended the previously established minimum allotments for states and territories. P.L. 106-402 stipulates that in years when total appropriations for SCDDs are less than or equal to $70 million, each state will receive at least $400,000 from this program and each territory will receive $210,000. When appropriations exceed $70 million, minimum allotments for states and territories will be $450,000 and $220,000, respectively. Matching funds are required on a 75% federal-25% state basis, except in the case of projects in "poverty areas," where the federal share may be up to 90%. For projects conducted by Council members or staff to implement state plan activities, the federal share may be up to 100% of the aggregate necessary cost of such activities.

Protection and Advocacy

As a condition for receipt of grant funds for SCDDs, states must have in effect a system of programs to protect and advocate for the rights of individuals with DD. P&A programs provide information and referral services and investigate reported incidents of abuse and neglect of individuals with DD. These programs have the authority to pursue legal, administrative, and other appropriate remedies to protect and defend the legal and human rights of individuals with DD. There are 57 P&A systems in the United States. Each state (50), each U.S. territory (5), the District of Columbia (1), and American Indian tribes (1) receive P&A funding. Appropriations for all entities are detailed in Table A -2 of Appendix A .

Funds for P&A systems are allotted on the same basis as the SCDDs, except no matching funds are required. The Developmental Disabilities Assistance and Bill of Rights Act Amendments of 1994 ( P.L. 103-230 ) set the minimum allotments under this program at $200,000 for states and $107,000 for territories in fiscal years when the total amount appropriated for the program is at least $20 million, and current law maintains those minimum allotments.

Although the DD Act provides a mandate for protection and advocacy of persons with DD, other federal laws have similar mandates for P&A programs for similarly vulnerable populations. Table 1 lists other P&A programs and the federal agencies that administer them. Together, these programs form a state, territorial, or tribal P&A system that focuses on securing the rights of persons with all types of disabilities wherever they reside. The DD Act is unique in that it charges the SCDDs with coordination of services with the other programs in the P&A system.

University Centers for Excellence in Developmental Disabilities Education, Research, and Service

Formerly known as "university-affiliated programs," University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDDs) are interdisciplinary research and public service units of universities or public, not-for-profit entities associated with universities. They provide training and technical assistance, and engage in scientific research that is intended to be directly applicable to meeting the needs of people with DD. These centers are in a unique position to facilitate the flow of research findings and disability-related information from the university environment to the public at-large. UCEDDs educate policy makers, employers, and community leaders about opportunities for persons with disabilities in an effort to increase the capacity of such individuals to live independently and lead economically productive lives.

UCEDD discretionary grants are awarded on a competitive basis for a period of five years. According to statute, existing UCEDDs receive first priority when DD Act funding is being distributed. In FY2010, there are 67 such UCEDDs, with at least one center in every U.S. state, the District of Columbia, Guam, Puerto Rico, the U.S. Virgin Islands, receiving $542,000 per year in federal funding.

Projects of National Significance

This program funds grants or contracts to public nonprofit institutions to enhance the independence, productivity, and social inclusion of people with DD. Projects of National Significance (PNS) differ from the SCDDs and P&A programs because PNS activities focus on emerging areas of concern, on issues that transcend the border of particular states and territories. Such projects may (1) provide support services for families of individuals with DD; (2) involve data collection and analysis; (3) support the advocacy, planning, and training functions of SCDDs; or (4) fund other projects, such as conferences and special meetings that may have an impact on federal or state policy. Examples of PNS projects include studies of racial disparities in access to services used by individuals with DD, or research that explores the transition from school to work for the DD population. PNS grants are administered by ADD at the federal level. Funding for the PNS grants in FY2010 was expected to support 46 grants for: youth activities, family support activities, data collection, evaluations of all DD Act programs, and programs focused on emerging issues of concern for the disability community such as Medicaid services available to adults and children with developmental disabilities.

New Programs Authorized

In addition to reauthorizing the existing programs described above, the DD Act of 2000 authorized three new programs. Title II authorized competitive grants to help states strengthen their family support programs for families with a severely disabled family member. Title III authorized one scholarship program to provide vouchers for post-secondary education for direct support workers who assist individuals with DD as well as a grant program for the development, evaluation, and dissemination of a staff development curriculum.

Funding

In FY2002, the following amounts were allocated for DD Act programs: $66.9 million for the SCDDs, $31.9 million for P&A programs, $24.0 million for the UCEDDs, $11.7 million for PNS, and $800,000 each for the new scholarships and staff development curriculum grants. Although authorization for the staff development curriculum lapsed after FY2003, the act authorized such sums as may be necessary for the other DD programs through FY2007, including a separate family support program that came into existence in FY2003. Known as Family Support 360 , this program only received funding in FY2003 (for planning) and FY2004 (for implementation). Since FY2005, ADD has funded the family support program using monies appropriated for PNS.

Congress appropriated $168.4 million for DD Act programs for FY2010. Table 2 shows the recent history of total funding allocations for the programs authorized by the DD Act. Total allocations for all the DD Act's programs have increased from $134.5 million in FY2002 to $168.4 for FY2010. Table A -1 and Table A -2 in Appendix A provide FY2002-FY2011 funding allotments for the SCDDs and for P&A programs, respectively, by state and territory. Although FY2011 appropriations have not yet been finalized, estimates are provided.

Program Evaluation

In accordance with accountability requirements of the DD Act, as well as those of the Government Performance and Results Act (GPRA) of 1993 and the Program Assessment Rating Tool (PART), the Developmental Disabilities Program Independent Evaluation (DDPIE) project has been developed to assess the overall effectiveness of the DD Act programs. The DDPIE project was divided into two phases. Phase One of the DDPIE involved (1) the development of evaluation tools, and (2) the implementation of a pilot study to test the accuracy, feasibility, and utility of the evaluation tools. Phase One included an advisory panel of relevant stakeholders, such as individuals with DD; families of individuals with DD; other consumers; advocates; researchers; and representatives from various DD networks to provide input and review draft materials. A working group of DD program representatives from SCDDs, P&A programs, and UCEDDs was established to incorporate DD program input; address concerns, such as potential duplication of data collection; and facilitate collaboration between DD program components in the development and piloting of evaluation tools.

Phase One Evaluation

Phase One evaluation activities, occurring between 2005 and 2008, were guided by the principles of the Centers for Disease Control and Prevention's (CDC's) Framework for Program Evaluation in Public Health and the American Evaluation Association. The DDPIE program evaluation process included identification of DD program key functions, with the development of measurements for each key function. A select, geographically diverse group of SCDDs, P&A programs, and UCEDDs piloted these evaluation measures.

Several findings emerged from the Phase One evaluation activities, including recommendations on (1) benchmarks and indicators to be used in a full-scale evaluation, (2) logistics for data collection, and (3) ways of making use of existing data that is reported from DD Act programs to ADD.

National Council on Disability Evaluation

A separate DD program evaluation effort has been initiated by the National Council on Disability (NCD). This one-year project is designed to study the effectiveness of services established by the DD Act and to develop recommendations for improvements that will enhance the quality of life and opportunities for people with DD. Specifically, it will

examine how the ADD administers, supports, monitors, evaluates, and holds accountable the programs and services under the DD Act, and evaluate select programs and services authorized under the DD Act.

Recent Legislative Efforts

Legal Representation of Individuals with Developmental Disabilities

Legislation that directly related to the DD Act was considered, but not enacted, in the 110 th Congress. In June 2007, H.R. 2839 was introduced by Representative Barney Frank. This bill would have amended the DD Act to require SCDDs and P&A programs to obtain authorization from individuals or their legal guardians before pursuing legal remedies on their behalf. In effect, litigants would have to "opt-in" to lawsuits filed on their behalf by DD Councils or P&A programs.

In October 2007, H.R. 3995 was also introduced by Representative Frank. Intended as a substitute for H.R. 2839 , it would have extended the right of individuals or their legal guardians to "opt-out" of any proposed class action lawsuits. H.R. 3995 would have required federally funded organizations representing plaintiffs in a class action to give notice to any Intermediate Care Facility for the Mentally Retarded (ICF/MR) that was named in said lawsuit. In turn, this ICF/MR would be obliged to give notice of the proposed action to its residents or their legal guardians.

Paralleling the bills introduced by Representative Frank, the ADD proposed a new rule that would modify the implementation regulations for the DD Act. Specifically, HHS sought comment on "…whether the current process involving class action lawsuits provides adequate protection for individuals with developmental disabilities," and on what criteria should be applied, or what clearance process should be followed, to include an individual as a member of a "class." In addition, HHS asked for feedback about how to handle situations in which there is a difference of opinion between the individual with a DD and his or her guardian regarding whether to become a member of a class action lawsuit. The public comment period for this notice of proposed rulemaking closed on September 29, 2008. Final rules were never issued.

Issues Surrounding H.R. 2839, H.R. 3995, and Proposed Regulations

The underlying objective of bills introduced in the 110 th Congress and the proposed regulations discussed above was to address some concerns that have been raised about the activities of some federally funded DD Act programs. Specifically, Voice of the Retarded (VOR), an advocacy organization, has argued that P&A organizations have been complicit in the neglect, and even death, of some individuals with severe mental retardation by bringing class action lawsuits, which have ultimately led to the closure of some ICFs/MR. VOR has contended that some low-functioning persons would have preferred to remain in an institutional setting and would have been able to do so, if P&A programs had been required to secure the approval of the families or guardians of these individuals with DDs before filing class action suits "on their behalf." In contrast, organizations such as American Disabled for Attendant Programs Today (ADAPT) have argued that the administrative burden associated with "opting-in" to a lawsuit is unreasonable and would only delay or hinder efforts to deinstitutionalize services for individuals with disabilities. Moreover, they contend, by limiting the number of class action suits brought against ICFs/MR, the "opt-in" provision in H.R. 2839 would have insulated facilities that provide substandard care, making it more difficult to penalize these institutions. ADAPT and other advocacy groups welcomed Representative Frank's substitution of H.R. 3995 for H.R. 2839 .

Individuals with Autism

Additionally during the 110 th Congress, the Expanding the Promise for Individuals With Autism Act of 2007 ( S. 937 , H.R. 1881 ), sponsored by Senator Hillary Rodham Clinton and Representative Mike Doyle, would have awarded additional grants to UCEDDs to (1) provide services and address the unmet needs of individuals with autism and their families, (2) make grants to P&A programs to address the needs of individuals with autism and other emerging populations of individuals with disabilities, and (3) award a grant to a national nonprofit organization for the establishment and maintenance of a national technical assistance center for autism services and information dissemination. Although individuals with autism already receive services funded under the DD Act, these bills would have given additional monies to SCDDs and P&A programs for the purposes of funding services specifically geared towards individuals with autism.

In the 111 th Congress, Representative Doyle also introduced the Training and Research for Autism Improvements Nationwide Act ( H.R. 5756 ), cosponsored by Representative Christopher Smith. H.R. 5756 would award grants to UCEDDs to provide interdisciplinary training, continuing education, technical assistance, and information to parents and healthcare professionals for the purpose of improving services to individuals with autism and their families.

Considerations for the 111th Congress

Legislation Related to the Protection and Advocacy Systems Authorized Under the DD Act

In the 111 th Congress, the House has passed H.R. 911 , the Stop Child Abuse in Residential Programs for Teens Act of 2009. Similar legislation ( H.R. 6358 ) also passed the House during the 110 th Congress. H.R. 911 requires standards and enforcement provisions to prevent child abuse and neglect in public and private residential programs that serve children with emotional, behavioral, or mental health problems or disorders; or problems with alcohol or substance abuse. Among other provisions, H.R. 911 would direct the Assistant Secretary of Children and Families in HHS to (1) implement an ongoing review process for investigating and evaluating reports of child abuse and neglect at covered programs; (2) establish public websites with information about each covered program, as well as a national toll-free telephone hotline to receive complaints; (3) establish civil penalties for violations of standards; and (4) establish a process to ensure that complaints received by the hotline are promptly reviewed by persons with appropriate expertise. H.R. 911 would require the Assistant Secretary to develop a process to immediately notify the state, appropriate law enforcement, and appropriate P&A system of any credible complaint of child abuse and neglect at a covered residential program.

Reauthorization of the Developmental Disabilities Act

Should reauthorization of the DD Act be considered in the 111 th Congress, advocates have identified a need to address expanded funding for the UCEDDs to meet the needs of individuals with DD and their families across the lifespan. There are indications that individuals with DD are now living longer. Also, there is increased recognition and appreciation of the impact of early life experiences on later life. Therefore, clinicians, families, and people with disabilities are increasingly recognizing the importance of long term planning for individuals with developmental disabilities who are living beyond childhood. The need to address the transition from pediatric health care services to adult care services for youth with chronic health conditions or disabilities was also identified in the 2007 Institute of Medicine report on The Future of Disability in America . The National Association of Councils on Developmental Disabilities recommended reauthorization of the DD Act; increased funding for SCDDs; provisions that would address community-based employment of individuals with DD; and the appointment of executive branch officials who have knowledge of DD as priorities for the incoming administration.

As of the date of this CRS Report, no bills to reauthorize the Developmental Disabilities Act have been introduced in the 111 th Congress.

Appendix A. Allotments for State Councils on Developmental Disabilities and Protection and Advocacy Programs, FY2002 - FY2011 (est.)

Appendix B. Current Projects of National Significance (PNS)

Appendix C. Acronym Glossary