Courtney Johnson, founder of the East Tennessee State University Neurodiversity Club, and others from the Autistic Self-Advocacy Network, met with the staffs of Sens. Bob Corker and Lamar Alexander, both R-Tenn., and Rep. Phil Roe, R-1st, on Friday as part of the group’s Autism Campus Inclusion Program.
It was all part of “a week-long training program on how to be better self-advocates, understanding the disability rights movement, and running campus organizations,” Johnson said.
But the main purpose of Johnson’s trip to Capitol Hill was to urge the reinstatement and expansion of the Empower Care Act and the Autism CARES Act. The group also proposed legislation banning the use of electroshock devices on those with autism.
Johnson said the Empower Care Act, or Money Follows the Person provision, is a bill that disability rights advocates are hoping will be reauthorized this year. It allows states’ funds for nursing homes to be used to pay for long-term support and services for people with disabilities outside of institutions.
Johnson, who also has autism and is currently on a waiting list for services under the act, said she hopes to see more programs expanded to help people with autism integrate into the community at large, citing the 85 percent unemployment rate for those with autism.
“With the Empower Care Act, we were talking about how it needs to pass so that more people with disabilities can be a part of the community instead of just being in institutions,” Johnson said. “I think Lamar Alexander and Corker’s offices were both pretty interested (in reauthorizing the act). That one saved $1 billion in Medicaid, so they were really excited about that.”
The Autism CARES Act, which is up for reauthorization in 2019, is a law that funds autism-related research and training programs. The goal is to coordinate research and training efforts across the government and private sector, but Johnson and others said they are pushing for a few changes when it comes to comprehensive autism research.
Johnson said adult autism research is lacking, saying that only 2 percent of research goes toward learning more about adults with autism and 2 percent goes toward research into the effectiveness of services provided.
“There’s not much research into autism throughout the lifespan,” she said. “We also discussed that there should be a CDC study on the prevalence of autism in adults.”
Johnson said one of the biggest concerns of the organization is the use of electroshock devices, which she said are still being used to “punish” people with disabilities at the Judge Rotenberg Center in Massachusetts.
While these devices have been denounced by the United Nations as a form of torture, the practice has still not been banned. Activists and advocates like Johnson are hoping to put pressure on legislators to ban it after it was ruled dangerous in 2014 and further proposals to ban the practice were put forward in 2016.
“That’s currently a big human rights issue in the autistic community,” she said. “There’s been a bunch of abuse of people with PTSD and trauma.”
Another concern for disability self-advocates like Johnson is the lack of representation on the Interagency Autism Coordinating Committee instituted under the Autism CARES Act. Out of 24 members on the committee, only two have autism. Johnson said that’s problematic, and changing this lack of political representation is a primary goal of organizations like the ASAN.
“Parents and friends and families don’t experience (autism) through the eyes of people who have it. We live with it every day, and there’s a lot of social stigma surrounding being disabled, so it’s important for people with disabilities to be at the forefront of advocacy,” she said. “If you don’t have the voices of the people affected, you’re not going to get a full view of the picture.”