Other Critical Goals
Our legislative goals reflect major laws and programs that may receive scrutiny in Congress. These laws and programs also play key roles in the lives of our constituents and their families. In particular, they provide the essential health care, employment, family, transportation, and technology supports to make community living a reality for our constituents. Essential criminal justice; data collection; Developmental Disabilities; emergency management; child welfare, foster care, and adoption; immigration and naturalization; liability insurance protection; non-profit organizations; prevention; quality of services; research; social services; tax policy; Temporary Assistance for Needy Families; and transportation are addressed by these goals.
Statistics clearly indicate that more and more individuals with disabilities are ending up in penal institutions and juvenile justice facilities. Many end up in such placements due to the lack of alternative treatment programs. These individuals frequently are victims of abuse and neglect. Too little is being done to protect these individuals and prevent systemic mistreatment.
The collection of accurate data on the incidence, prevalence, and well-being of individuals with I/DD is essential to informing public policy. Significant gaps in data collection exist. Many national surveys still do not include questions that identify disability in a consistent manner. Different definitions of disability and measures of disability across various surveys make it difficult to assess the status of people with disabilities and identify trends. Consequently, there is no comprehensive data on individuals with I/DD and their families.
The Developmental Disabilities and Bill of Rights Act (DD Act) is the fundamental law supporting states to enhance the lives of people with developmental disabilities and their families. This law promotes the independence, productivity, integration, and inclusion in society of people with I/DD.
Recent natural, public health, and man-made disasters demonstrate that preparedness and relief and recovery efforts remain critically inadequate with regard to people with disabilities. People with disabilities still disproportionately represent those who remain uprooted and at risk in communities around the country. While significant legislative action to address the situation of people with disabilities in emergency preparedness and relief efforts has taken place, much remains to be done. Furthermore, the legislative progress that was achieved must be built upon.
Child Welfare, Foster Care, and Adoption
At least one-third of the more than 400,000 children and youth in American foster care systems today have disabilities. The very systems intended to protect children were not designed to identify, assess, and manage the needs of children with disabilities and their foster families. Once in the foster care system, children with disabilities may face a full range of systemic problems that prevent positive life experiences and often experience abuse and neglect. Caseworkers lack the tools to identify and assess disabilities, foster parents lack even basic information about the unique needs of children placed in their homes, and foster children with disabilities are often considered “unadoptable.”
The voluntary and faith-based non-profit sector has provided, and must continue to provide, the overwhelming majority of services and supports for our constituents. Disability related non-profits are assuming greater roles as state funding is reduced. The non-profit sector must also be allowed to maintain its traditional role of advocacy.
Quality of Services
The federal government has an important role in ensuring quality services. This includes ensuring that services are based upon principles of maximizing independence, self-direction, and a person-centered community-supported life, while providing for health and safety. The federal government should be fulfilling its role in monitoring and enforcement of the quality of services to our constituents.
A variety of federal agencies are responsible for undertaking vital research activities to prevent and ameliorate disability and to improve the quality of life for children and adults with I/DD. Some of these research efforts directly target our constituents, while others are more broad based.
Our public policy goals are to recognize that social services programs are underfunded and that a wide variety of needs remain unmet. Title XX of the Social Security Act, the Social Services Block Grant, provides states with funding to provide many community-based services to people with disabilities and other targeted low income populations. The Congress should protect and, at a minimum, restore funding for Title XX to $2.8 billion or bring it to the level it would have been had it been adjusted annually for inflation.
Millions of Americans with disabilities have difficulties obtaining transportation. People often have trouble traveling from place to place because transit systems are unavailable, inaccessible, or not coordinated. Transportation provides a vital lifeline for people with disabilities to access employment, education, health care, and community life. With the two year extension of the Moving Ahead for Progress in the 21st Century (MAP-21) accomplished, Congress must begin addressing the longer term need for reauthorization of the surface transportation legislation. A significant expansion of public transportation will achieve many important societal goals such as more jobs, a cleaner environment, and better mobility options for seniors and people with disabilities. Principles of universal design should be integrated in the development of new transportation devices and projects to ensure greater mobility for people with disabilities.