United Cerebral Palsy (UCP), The Arc, the American Association on Intellectual and Developmental Disabilities (AAIDD), the American Network of Community Options and Resources (ANCOR), the Association of University Centers on Disabilities (AUCD), and the National Association of Councils on Developmental Disabilities (NACDD) envision a nation whose high expectations for all of our citizens with disabilities make possible the fulfillment of academic potential, productive employment in the community, active engagement in civic life, and full inclusion in society. The Americans with Disabilities Act (1990) and the U.S. Supreme Court in the 1999 Olmstead decision affirmed the right of people with disabilities to a life in the community.
For decades, Congress has been taking important steps to secure that right and achieve that vision. Now - even under daunting fiscal constraints - is not the time to halt that forward movement. The vision is not only just, but affordable. People with disabilities want to live, work, pay taxes, and be productive and fully included in their communities. People would rather live in the community than in nursing homes or institutions.
We can accomplish the goals laid out in this Public Policy Agenda. Our members are working hard with federal, state, and local partners to redirect taxpayer dollars within redesigned systems and policies realigned to achieve the outcomes all Americans want: dignity, meaningful choice, and the opportunity to contribute and to succeed.
We look forward to working with Congress to achieve these goals.
For many decades, the six national disability advocacy organizations that endorse the public policy agenda contained in this document have recognized the vital role the federal government plays in the everyday lives of children and adults with intellectual and developmental disabilities (I/DD) and their families. From civil rights protections to community housing, from special education to Social Security benefits, from job training to basic health care, from transportation to long-term supports and services and more, the federal government spends billions of dollars, both directly and in partnership with state government, on people with I/DD. These programs are funded through entitlement programs such as Medicaid and Medicare and discretionary programs such as vocational rehabilitation, HUD housing, and education. Many individuals, families, and professionals in the field are, however, unaware of the huge impact of this federal funding since most of it flows through state and local governments.
State and local governments, particularly during economic crises like our nation is now experiencing, are increasingly dependent on federal dollars. In addition to providing funding for disability benefits, services, and supports, the federal government also monitors state and local governments to assure quality services and protection against the abuse of various civil rights. It also conducts research and prevention programs, improves preparation and response in major emergencies, and collects vital data on disability.
State and local governments and the private and non-profit sectors cannot replace the funding and other roles played by the federal government in disability policy. Therefore, people with disabilities, their families and advocates, and the disability service system are committed to helping protect, enhance, and modernize the federal approach to disability policy.
It is critical that, in all of their actions, Congress, as well as state and local governments, adhere to the principles established by landmark legislation for people with disabilities – the Individuals with Disabilities Education Act (IDEA) of 1975 and the Americans with Disabilities Act (ADA) of 1990. Both of these laws embody the fundamental values eloquently expressed in the Developmental Disabilities and Bill of Rights Act of 2000:
“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.”
The legislative agenda below sets forth critical and priority goals that the U.S. Congress needs to respond to in this Congress.
Developmental disabilities are physical or mental impairments that begin before age 22, are likely to continue indefinitely, and result in substantial functional limitations in at least three of the following:
Self-care (dressing, bathing, eating, and other daily tasks);
Developmental disabilities also result in a need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong duration and individually planned and coordinated.
Some common types of developmental disabilities are cerebral palsy, intellectual disability, autism spectrum disorders, Down syndrome, Fetal Alcohol Spectrum Disorder, Fragile X, and epilepsy.
Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers conceptual, social, and practical skills. This disability originates before the age of 18. The term intellectual disability covers the same population of individuals who were diagnosed previously with “mental retardation” in number, kind, level, type, and duration of the disability and the need of people with this disability for individualized services and supports. Furthermore, every individual who is or was eligible for a diagnosis of “mental retardation” is eligible for a diagnosis of intellectual disability.
Most federal laws that serve people with disabilities through established eligibility categories use the term “mental retardation.” In 2010, the President signed Rosa’s Law, which directed the substitution of the term “intellectual disability” in federal education, health, and labor laws; however, the term remains in other federal laws. The Congress should substitute the term “intellectual disability” for the term “mental retardation” whenever a law that uses that term is subject to reauthorization. This change should not in any way alter eligibility requirements or service availability since the change in terms is not intended to do so. However, because court decisions and federal law regarding the death penalty use the term “mental retardation,” that term will likely remain in use until federal law and state and federal courts adopt the use of the term “intellectual disability.”