, 29 tweets, 9 min read Read on Twitter
While it's nice to see @Spectrum talk to #ActuallyAutistic voices, there are a couple of important factual errors and (I assume) inadvertent misrepresentations in this piece. Thread to follow.
First, because it's most important, the federal rules referenced here don't say anything about the size of the setting people live in - instead, they talk about the rights people have within a particular setting: medicaid.gov/medicaid/hcbs/…
I can understand how the author may have been confused on this point, since NCSA and other opponents of federal regulation in this space have repeated that (false) talking point frequently, but the actual text of the rule makes no reference to size.
What is true is that we have a wealth of research and evidence showing that people are MORE LIKELY to enjoy those rights in smaller settings than in large congregate residential settings.
Even those sections of the rule that do relate to "settings that isolate" people from the broader community don't totally prevent such settings from being funded, contrary to claims by Lutz & others.
They simply require them to be funded as an institution, a funding authority that is actually more robust in Medicaid than the scarce community services dollars that they want to access. States can't maintain a waiting list for institutions, they can for community supports.
Why do gated community providers want to avoid being funded as institutions, if the funding is better? Because they want to avoid the regulation that was put in place to avoid those large congregate settings from descending into snakebites like Willowbrook and Pennhurst.
Institutional funding streams come with health and safety, staffing and fire code requirements that HCBS funding streams often don't - because we recognize that institutional care is more dangerous than community based services.
Large congregate residential campuses - which are not a good idea to begin with - are even more dangerous if they're permitted to be funded outside the safeguards of Medicaid's institutional funding authority.
But even setting all of that aside, the Settings Rule being referred to in @Spectrum's article actually does allow such settings to get HCBS funding - if they can prove they're not isolating people from the community.
Only a few weeks before the article came out, the Trump Administration had issued guidance on this topic: autisticadvocacy.org/2019/03/coalit…
If the rules are implemented with fidelity, always a risk under this admin, it should still be difficult (but not impossible) for congregate settings to receive HCBS funding.
None of this nuance is reflected in the @Spectrum article, which leaves the reader with a flawed understanding of the regulation under controversy, rooted in only one side's talking points about what it is.
Second, I think it's unfortunate that the piece doesn't acknowledge that #neurodiversity advocates do consider autism a disability, not just a neurological difference.
The piece uncritically repeats comments from neurodiversity opponents implying that we don't see autism as a disability. This is categorically false, and a topic I discussed with @Spectrum's fact-checker at length.
The first major piece of legislation ASAN worked on when I came to Washington a decade ago was the ADA Amendments Act, which ensured that autistic people and others counted as people with disabilities under the ADA. autisticadvocacy.org/2009/12/testim…
ASAN works very closely with the broader disability rights community - even our criticism of Autism Speaks is part of a broader critique made by other disabled-run organizations: dsq-sds.org/article/view/6…
I served as a member of the National Council on DISABILITY, I am writing a book on the history of American DISABILITY advocacy, ASAN says constantly that we want to bring autism into the mainstream of American DISABILITY policy.
I genuinely don't know how we can be more clear than we already are on this, and it's unfortunate that @Spectrum allowed this misrepresentation to pass by unresponded to.
I also think it's unfortunate that the piece doesn't acknowledge that the work ASAN and other neurodiversity advocates do focuses on the broad scope of the spectrum, including people who experience severe impairment.
Neurodiversity advocates frequently work on issues designed to help autistic people who can't speak, autistic people with self-injury or severe behavioral challenges & others w similarly severe challenges.
That work gets ignored because we believe that people with very severe needs can still be supported in integrated settings - a belief that most disability organizations, including parent-led ones, share with us.
But it is precisely because we aren't willing to abandon those in our community with the most severe impairments that neurodiversity is controversial, not because we ignore them.
A "truce" rooted in us accepting the idea that Autistic people who can't talk deserve to be segregated and subject to aversives, restraint, seclusion and other brutal techniques advocated by our opponents would be a moral betrayal on our part.
That's why there are so many parents of autistic children with significant support needs, like @shannonrosa and @kerima_cevik and others, who do support the neurodiversity movement. I wish @Spectrum had reflected their voices too.
One final thought: there's a long and unfortunate history of professionals suggesting that Autistic people aren't competent to comment on our own lives, that our critique of autism policy is somehow about skewed autistic cognition, not real issues.
Casanova's comment here accusing neurodiversity advocates of "black and white" thinking is a fairly clear example of the form. He avoids coming out and saying "neurodiversity advocates are too autistic to have their opinions trusted" but it's a heckuva dog-whistle.
But take heart, #ActuallyAutistic friends. If there's one thing I've observed in all my time in advocacy, it's that this sort of backlash materializes because of how mainstream #neurodiversity is becoming.
Our opponents lash out because they see us as a threat. They see us as a threat because we're winning. :-) #NothingAboutUsWithoutUs
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