The Arc, AAIDD, ANCOR, AUCD, NACDD, and UCP recognize the vital role that the federal government plays in providing services, supports, and benefits for our constituents and in supporting programs that help prevent the causes and mitigate the effects of mental and physical disabilities. Millions of people with disabilities will continue to depend on the federal government for certain services, supports, and benefits throughout their lives.
Nonetheless, most federal programs that support our constituents and their families are grossly under-funded, leaving hundreds of thousands underserved or continually waiting for services, and these numbers are constantly growing.
There is also an explosive national crisis in the availability of appropriately qualified direct support workers, due to factors such as low pay, inadequate benefits, and limited career options. This situation leads to high turnover among workers and severely limits the ability of providers to maintain or expand their services and supports. Worse, this crisis puts the lives of our constituents at risk. These problems also affect the availability of other professionals in the field.
American society continues to support tremendous mobility of all families within and between states. However, people with disabilities who receive any level of supports from state systems are often unable to move to join family in other states, for example, when their parents move for employment or retirement, or when their parents die and they need to move nearer adult siblings. Research demonstrates that wage earners in many families decline promotions, transfers, and overtime in order to care for their family member with a disability, thus limiting that entire family’s income and future. Research should be conducted to document the hardships of such families, including but not limited to, impacts on the health, income, assets, and divorce rates of caretakers. It is time for the nation to develop family-friendly mechanisms to ensure portability of federally funded supports so that the money can truly follow the person.
The Arc, AAIDD, ANCOR, AUCD, NACDD, and UCP recognize that the Congress drives the disability agenda, and some of our priority policy agenda may not be dealt with in this Congress. We will respond as appropriate to all Congressional activity related to disability policy.