RFK Jr.‘s ignorance about autism is bad enough. Republicans' Medicaid cuts are worse.

Yahoo

04-05-2025

April 2025 was the weirdest Autism Awareness Month in my life, thanks largely to Robert F. Kennedy Jr.
The secretary of health and human services finished the month as he began it: spreading conspiracy theories, misinformation and lies about autism, vaccines, basic medical theories and more. He promised a study that would find the causes of autism by September (a timeline his NIH director immediately abandoned). He threatened to form a registry of autistic people, then pulled back, but not before parents began canceling assessments out of fear of what the government might do with that information. And in an interview with Dr. Phil, he not only offered more false links between vaccinations and autism, but also chemtrail conspiracy theories and an insistence that parents considering vaccinating their kids should 'do their own research.'
That's plenty of 'awareness' — the wrong kind of awareness. I need families like mine — my 18-year-old son is autistic — and those who care about us to become aware of the threats against Medicaid. I need awareness of the consequences that proposed GOP cuts would exact on families like mine, and what we can do to stop or mitigate the coming disaster.
I don't know that we can stop Kennedy from saying ignorant and stigmatizing things, but we can't spend the next four years chasing down and debunking a man who literally doesn't believe in germ theory. But the Republican-controlled Congress, backed by the president, is planning radical cuts to Medicaid, and there's nothing more important for autistic people, their families and everyone with any disability or a loved one with a significant disability in America.
Zoe Gross, director of advocacy at the Autistic Self Advocacy Network, says it's been the 'most intense April' for her in terms of media advocacy, with the need to refute public statements from the Trump administration, address community panic around the 'registry' and more. But the time spent just trying to bat back the worst statements comes with a cost. 'What we're missing,' she told me, 'is looking at the practical needs of autistic people in the U.S., how they can be met, and the government's role [in meeting them].'
She's worried because the administration is 'trying to take hundreds of millions of dollars out of Medicaid' and there's no way to do that without cutting back on Home and Community Based Services (HCBS), which allow autistic people to live independently and prevent family members from having to leave the workforce to care for their loved ones. Right now, recipients of HCBS have their needs assessed, then get assigned a number of hours of support based on that assessment — already a highly contested and stressful practice.
'If Medicaid gets cut, states are going to have to make decisions,' Gross says. 'One thing they could do is cut people's hours. People will be stuck in apartments, in wheelchairs, unable to bathe, dress, go to the bathroom.' People who rely on support professionals to get them to and from work, to grocery shop, to function as highly independent members of society will lose that independence. People who need 24/7 care may be forced into institutions, or family members will have to leave the workforce to provide care at home.
My son is autistic and needs a responsible adult around at all times. He also has Down syndrome, is intellectually disabled, and is nonverbal but a great communicator. I always worry that accurately describing his support needs will wrongly convey the idea that he's a burden. He just requires specific kinds of supports. They aren't really that expensive and are pretty easy to provide. Medicaid supplies him health care, an aide who allows him to access the world in the same ways that other teenagers do, and access to therapeutic programs not otherwise covered in school.
As he grows older, HCBS will enable him to be supported while living at home (with us!) or in some other community context — if HCBS survives this budget process, that is. The other options are: institutionalization, which we won't do (though others' medical circumstances may warrant shifting to residential care), or a family member providing all the daily support without sufficient state assistance.
Our situation isn't atypical, but one problem is that many Americans who rely on Medicaid, or love someone who does, don't even know it. States administer Medicaid under many different state-based program names, and users often don't know their state program is, in fact, Medicaid. One person who might help ensure people know this would be, of course, the secretary of health and human services. But at his confirmation hearings, alas, Kennedy seemed not to know anything about the $800 billion program.
Autism Awareness Month began in 1970, and there have been both upsetting, divisive and downright weird months before. We're always a divided community, with splits among autistic people, among parents (many of whom are autistic, others of whom perpetuate the worst stereotypes about autism as epidemic), and between family and self-advocate communities. April can exacerbate such divisions, sadly, even without Kennedy perpetuating horrific stereotypes. Increasingly, the autistic community focuses on autism 'acceptance' rather than awareness, because acceptance is an action, something each of us can, and must, do.
But Gross says that maybe this once, awareness might help. 'If there's increased awareness of autism this month, that's great,' she said, '[because] we want you to be aware of the precarious situation of Medicaid right now. We depend on it for daily survival.'
This article was originally published on MSNBC.com