Wednesday, January 6, 2016

Hillary Clinton's Autism Plan: In Which Autistic People Are Deserving Human Beings

Shannon Des Roches Rosa
Senior Editor, Thinking Person's Guide to Autism

Hilary Clinton's campaign published an autism plan yesterday. It's like nothing I've ever seen in an autism-centric policy statement, in a good way. It's not perfect, because this is politics, and politics are more about compromise and incremental gains than revolutionary change. But throughout the statement, autistic people are treated as human beings with legitimate and sorely unmet needs, and not the usual (infuriating-to-read) millstones, pity magnets, or financial black holes that are tearing the fabric of families, not to mention our nation's budget, apart. Human beings who deserve to be prioritized. That's welcome progress, and I would like to see such outlooks become our country's policy reality.

The author and her son
[image: selfie of two white
people on a twilight hilltop.]
As the parent of a beloved autistic teenager, and as a person who adores her autistic friends, I am pleased that so many of the proposals are in line with what autistic, autism, and disability advocates want, and have been pushing for -- for years. These are also topics the community at Thinking Person's Guide to Autism asks after, almost daily.

The core of the Clinton autism statement is as follows:
Hillary Clinton believes that our country must make supporting individuals and families with autism a priority—for the millions of people living with autism and their loved ones, and millions more who will be diagnosed in the future. As president, Clinton will:
  • Conduct a nationwide early screening outreach campaign to ensure that all children, and in particular children from underserved backgrounds, can get screened for autism.
  • Push states to require health insurance coverage for autism services in private insurance plans as well as marketplace plans offered in the state so that people with autism are not turned away.
  • Launch the Autism Works Initiative to extend new resources and establish public-private partnerships that will connect people with autism with employment opportunities.
  • Authorize the first-ever adult autism prevalence study in the U.S. so that we improve our understanding of how to identify, serve, and support adults on the autism spectrum.  
Here are Clinton's specific proposals that make me do a hopeful little dance:
  • Stepping up early autism screenings, especially for underserved communities. Girls, low income families, and kids of color are emphasized specifically, for being too-often overlooked in the current systems. Including sorely needed outreach strategies as part of this effort. Ensuring that insurance and Medicaid cover this outreach.
  • Increasing access to autism services -- and a wider range of services, including assistive technology, including Medicaid and Military Families coverage, and including transparent accountability for providers like Medicaid.
  • Centering autistic kids' safety as a matter of personal freedoms/rights, while condemning mechanical and chemical restraint and seclusion practices, and asking for more staff education, understanding, and training. Also bullying prevention.
  • TRANSITION PLANS. All caps as my son is fifteen, his transition to adulthood is increasingly at the front of my brain, yet it seems most people and their families have to figure this out on their own, and frantically cobble a unique plan together from scraps, whispers, and elusive options. We need guidelines and timelines and systematic supports, to make transition plans not just doable but more straightforward for ever person who will need one.
  • Person-centric living and working options for autistic adults. No sheltered workshops, no institutions. My son, his friends, my friends, deserve better choices for where they live and work. They should be part of their communities.
  • Encouraging all states to stop forcing people with disabilities to live in poverty by making ABLE savings plans available throughout the Union.
  • Increased supports for caregivers. My son is a high-support individual. He and his family are very lucky, in terms of being able to provide supports via insurance as well as out-of-pocket. Yet the coverage we have available is still rarely enough, for my son, as well as for his family. We need to do better for everyone involved, so that everyone involved experiences the best quality of life possible.
  • A research plan that puts (existing) patient services, employment, and housing first. And never once mentions "cure," "prevention," or "recovery."
  • The first-ever US adult autism prevalence study. In the UK, autism prevalence is nearly the same in adults as in children. Setting a similar precedent in the US would be tremendous, and a way to detect autistic adults who need supports but had previously eluded detection due to changing and/or insufficiently sensitive diagnostic criteria.
  • Enforcement. Another huge one. None of these proposals will be of much use if they aren't enforced. I'll quote from the campaign directly here:
    "Clinton will also pursue a broader enforcement agenda that protects the rights of people with autism: to ensure that children who are diagnosed are referred for services, to enable them to receive the assistive technologies to which they are entitled under the law, to guarantee the protections of mental health parity legislation and of the Americans with Disabilities Act, and to expand funding for the protection and advocacy groups that play a pivotal role in sustaining the progress we have made."
What Needs Work?
  • I'm skeptical of the MSSNG genetic research program, as it sparked the #NotMSSNG social media awareness campaign by autistic people and their supporters. We need more research into autism genetics, in terms of understanding -- but the program is helmed in part by the causation-oriented organization Autism Speaks, and that makes me worry.
  • We need more research into co-occurring and overlooked conditions. So, so many autistic people need support for anxiety, depression, gastrointestinal issues, processing, sensory, and other difficulties, as well as underdiagnosed disorders like Ehlers-Danlos, Tourette's, OCD, dyslexia, and dyspraxia. Addressing these needs would greatly improve autistic people's quality of life.
  • I'm glad to see assistive tech like speech devices mentioned -- I hope this includes screenings, evaluations, and school/family trainings as well. My son is learning to use AAC, and it is a long, intensive process for us all. Plus I was told for years (inaccurately) that he didn't need AAC because he had some language. Merely providing the tech is not enough. Multiple supports need to be in place.
  • I'd like an assurance that autistic people will be involved in helping take Clinton's autism plan from policy to reality. Nothing About Us Without Us, as The Autistic Self-Advocacy Network says.