NCSA’s president shares her experience advocating for severe/profound autism on Capitol Hill
Jill ventured from her California home to spend three days advocating in and around D.C.
By Jill Escher
America is a representative democracy, but increasingly it feels that the country’s population disabled by severe and profound autism is not being represented, at all.
Let’s be honest. A misleading feel-good narrative about autism has conquered Washington, D.C. For example, at the behest of Autism Society of America, President Biden signed a proclamation dubbing April 2 “Autism Acceptance Day,” to, among other things “celebrate the immense contributions of all neurodiverse people” and “learn more about the experiences of autistic people from autistic people.” Federal agencies gush about “Autism Acceptance Month,” with a parade of “neurodivergent” speakers and nary a word about the enormity of the autism crisis. Regulations increasingly seem almost designed to ignore severe and profound autism, while the IACC (federal Interagency Autism Coordinating Committee) obsesses about “preferred language,” and research dollars flow away from the dire needs of the severely impaired.
Considering that those disabled by severe and profound autism cannot advocate for themselves, and that their parents, typically burdened by duties of care and financial stress, are largely unable to travel to D.C., this massive and growing population of Americans — some of the most devastatingly disabled people in the country — easily sinks into a hell-pit of invisibility.
So when I traveled to Washington, DC with other advocates last week, I did so with a heavy heart (and not just because of insomnia on the red-eye), knowing our urgent NCSA message is overshadowed by louder voices selling the myth, “Autism isn’t a problem, it’s just a diversity to be celebrated, please move on.”
Organized by the nonprofit Together for Choice, our group of five fierce advocates however spoke a unfiltered story with an unwavering voice: those with severe autism and related I/DDs need and deserve specific attention in federal policy, but they are being left behind.
Our major asks were around Medicaid policy, HUD (Department of Housing and Urban Development) law, and the Autism CARES Act, though we would sometimes veer into other territory, such as non-competitive employment (see handouts below). We spoke of the growing numbers of autistic young people and adults stuck in ERs with nowhere to go, of evictions and lawsuits, of people losing their cherished jobs due to fairytales about “competitive, integrated employment,” of the need for a wide variety of housing options, including congregate settings that offer needed space, amenities, and social opportunities. We spoke of kids and adults who are too disabled to be served by our disability system.
We shared stories of state Medicaid HCBS (Home and Community-Based Services) programs that routinely deny services to the severely disabled via “empty waivers,” as happens when service providers pick and choose their clients — and typically reject our children and how self-direction often discriminate against severe clients by denying payments for disability-oriented programs. We told of discriminatory HUD policy that has made it all but impossible to develop new housing for our population. We spoke of a growing population of adults isolated at home, the staffing crisis, and aging parents panicked about the future.
So what do we need? Medicaid HCBS rules that are truly person-centered, not just person-centered for the high-functioning. We need a national baseline requirements free from arbitrary state rules that have no relationship to person-centered needs, financial reality or quality of care. We need HUD dollars to work for us. We need research to address our families’ desperate needs. The full continuum of care to meet the full continuum of needs.
It can feel futile to make change at the federal level when disability policy is so strongly guided by federally funded advocates who often refuse to grapple with the needs of the severe and profound autism community.
But guess what. Medicaid is OUR system, HUD is OUR program, the Autism CARES Act is OUR money. These things belong to US. We deserve a much louder say in how these federal programs are funded and how they are managed, we have to stand up for the truth. Lawmakers and agency staff must hear our voices.
The trip gave me hope. I could easily envision severe and profound autism families connected with their elected representatives in a unified message to demand a system that works for us, and not just for an idealized vision of disability. Though many cannot travel to D.C., most can connect to the field offices or hold virtual meetings.
Our group at work: Left: Ashley Kim (Together for Choice), Jill (NCSA), Rep. Marc Molinaro of NY, Jackie Ceonzo (SNACK NYC), and Kari Bates (Arc of Jacksonville). Center: Kari, Jill, Jackie, and Arzu Forough (Washington Autism Alliance) at CMS. Right: Jackie, Jill, Rep. Aaron Bean of FL, and Kari.
In just this one brief trip, we met with key Medicaid HCBS managers at CMS headquarters in Baltimore, and on Capitol Hill key staff of Senate and House committees, and congresspeople, with several follow-ups by Zoom as well. Yes, some Capitol denizens were more attuned to autism issues than others, and yes we did encounter some alarming myths (“But isn’t the increase in autism just due to a change in the diagnostic code?”), but overall we found people willing to listen and receptive to our message.
It was particularly gratifying to meet with Representative Marc Molinaro, R-NY, the father of an adult daughter with autism.
Jackie, Jill and Arzu with Alison Singer of the Autism Science Foundation, who was also on Capitol Hill fighting for improvements to the Autism CARES Act.
NCSA will continue to work with organizations around the country to reform federal policy so that all people disabled by severe and profound autism have an equal chance at receiving the supports they need and deserve. We know that many of you will be joining us in this quest. Please consider signing up for the NCSA National Grassroots Network here so you can join the front lines in the fight for rational federal and state autism policy. Under the capable guidance of NCSA Policy Director Jackie Kancir, our Network is destined to do incredible things.
Jill Escher is president of the National Council on Severe Autism.
Some of our handouts:
