In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters. And coronavirus is proving to be the biggest disaster of all. Congress has attempted to respond.
The undersigned members of the Consortium for Citizens with Disabilities (CCD) Task Force on Developmental Disabilities, Autism, and Family Support urge you to include the following programs in the next COVID-19 bill. The mission of the task force is to advocate for federal public policies that directly relate to individuals with developmental disabilities, autism spectrum disorders, family supports, and the prevention of child abuse and neglect. These programs were not included in previous COVID legislation and demand for the services they provide have increased dramatically in the last several weeks, leaving them unable to meet the needs of people with developmental disabilities and their family caregivers.Among the programs:
We urge Congress to allocate emergency funding to the Administration for Community Living to fund a National Autism and Other Developmental Disabilities Resource Network and Navigator Program. This resource network would help ensure access to specially trained navigators who can provide person-centered case management across the lifespan and referrals to local providers, and resources and information during this time and throughout the recovery. This program is needed to fill the gap in existing programs – namely, the Family-to-Family program (described below) which assists families of children with special health care needs with health care related issues, and the Parent Training and Information Centers under the Individuals with Disabilities Education Act (IDEA), which serves families of children and young adults needing assistance with issues related to early intervention, pre-school, elementary, and secondary education. A new navigator program would help meet the range of needs of adults with developmental disabilities who are not served by these other family support programs.
LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES (LEND) As affirmed by the Congressional Autism Caucus on March 21, 2020, the rapid shift to telehealth for assessment and treatment has a disproportionate impact on people with disabilities and their families. Critical support is needed to continue access to evaluation and treatment. The 52 programs funded under Autism CARES Act (P.L. 116-60) provide an existing infrastructure that is pivoting to meet this need and has capacity, with emergency funds, to provide access to assessment and treatment for people with neurodevelopmental disabilities and their families. We request $20 million to HRSA’s Autism and other Developmental Disabilities program for the LENDS.
Signers include the Autism Society of America and the Autistic Self Advocacy Network.