From Transition Letter Attachment Sent by AAPD and a Coalition of Consumer Controlled Organizations (12/22/08):
Promote a Disability Research Agenda
· Federally funded disability research focuses disproportionately on basic scientific research to discover the cause of “disabling conditions,” while ignoring the impact of disabilities on quality of life and participation for individuals affected by the particular condition or disability.
· A quality of life and participation-based research agenda will provide evidence on the most effective and methods of delivering services in housing, transportation, education, prevention, wellness, healthcare, recreation, and other community services that empower individuals with disabilities, and enhance and promote transition and independent living.
· At present, the minimal research related to quality of life and participation of individuals with disabilities is split between many federal agencies, and lacks coordination, and noticeable outcomes.
· Under several federal programs, researchers who work on basic scientific research are eligible for student loan forgiveness, while researchers who investigate quality of life and participation of individuals with disabilities do not, thereby disincentivizing disability research.
· A robust coordinated disability agenda that includes input from the disability community will ensure that federal disability research programs compliment other aspects of disability policy, such as de-institutionalization (Olmstead), IDEA’s requirement for evidence-based methodologies for students with disabilities, and increasing the number of individuals with disabilities in the workforce.
Long Term Goals:
· Establish parity between basic science and quality of life and participation-based research in the federal disability research agenda and within each disability specific research agenda.
Short Term Goals:
· Issue an Executive Order requiring that all federal agencies, including, but not limited to NIH, HRSA, NIDRR, CDC, DOL, SSA, and HHS, provide at least equal funding for services-related, quality of life, and participation-based research, as basic science research, both within general disability research agendas and within each disability specific research agenda, and where feasible, use methodologies that include individuals with disabilities as equal partners.
· Issue an Executive Order appointing representatives of the disability community to the Interagency Committee on Disability Research to provide consumer input and ensure this order applies to all disability specific inter-agency research committees, such as the Inter-Agency Autism Coordinating Committee.
· Issue an Executive Order including student loan forgiveness for services-related or quality of life and participation-based researchers on parity with researchers who work on basic scientific research.