Legislative Agenda for the 112th Congress 

While the United States is one of the wealthiest countries in the world, our nation is far from meeting the diverse needs of our constituents and their families, many of whom find their lives at stake as the federal role in disability policy is being addressed.

The First Session of the 112th Congress faces numerous challenges.  Frozen federal funding, escalating federal and state deficits and numerous federal disability laws requiring expansion and modernization combine to put the system of disability benefits and supports at grave risk. 

What is The Role of Federal Policy in Disability?

For many decades, the six national disability advocacy organizations that endorse the legislative agenda contained in this document have recognized the vital role the federal government plays in the everyday lives of children and adults with developmental disabilities 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 developmental disabilities.  These programs are funded though entitlement programs such as Medicaid and Medicare and discretionary programs such as vocational rehabilitation, HUD housing, and education.  Many families and even some 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 on the following pages sets forth Critical and Priority goals that the U.S. Congress needs to respond to in this Congress.

What is a Developmental Disability?

Developmental Disabilities are physical or mental impairments that begin before age 22 and alter or substantially inhibit a person's capacity to do at least three of the following:

• Take care of themselves (dress, bathe, eat, and other daily tasks)
• Speak and be understood clearly
• Learn
• Walk/Move around
• Make decisions
• Live on their own

• Earn and manage an income

Some common types of developmental disabilities are cerebral palsy, intellectual disabilities, autism spectrum disorders, and epilepsy.

What is an Intellectual Disability?

Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior, which covers many everyday 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 should remain in use until the official disability classification systems conform to the use of the term “intellectual disability.”

What is Cerebral Palsy?

Cerebral Palsy (CP) is a number of disorders of the developing brain affecting body movement, posture and muscle coordination.  CP is caused by damage to one or more specific areas of the brain, usually occurring during fetal development; before, during, or shortly after birth; during infancy; or early childhood.  It is not a disease, not progressive, nor communicable.  The United Cerebral Palsy Research and Educational Foundation estimates between 1.5-2.0 million children and adults have cerebral palsy in the United States