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Yahoo
22-05-2025
- Health
- Yahoo
My son's life depends on Medicaid. Program cuts put his future in jeopardy.
Carol Chapin's son joins a protest in Madison to oppose cuts to the Medicaid program. (Photo courtesy of Carol Chapin) This week, the U.S. House of Representatives and Wisconsin's Republican members — U.S. Reps. Bryan Steil, Derrick Van Orden, Glenn Grothman, Scott Fitzgerald, Tony Wied and Tom Tiffany — are supporting a budget that would slash federal Medicaid funding by $790 billion, according to the latest Congressional Budget Office estimate. For my family, this isn't just a number on a budget sheet somewhere in Washington. For us, it is deeply personal. These cuts have the potential to devastate our lives. My son Liam lives with a developmental disability. Thanks to Medicaid — and more specifically, a category known as Home and Community-Based Services (HCBS) — he's able to live independently in his own apartment. He receives support each day to help him manage meals, take his medications, and safely get to his two part-time jobs using paratransit. He volunteers at a local food pantry. He makes art. He participates in community programs for people with disabilities. He takes community college courses and continuing education classes, and his goal is an associate's degree in architectural technology. He's proud to call Madison's Eastmoreland neighborhood home. All of this is possible because of Medicaid. But the Home and Community-Based Services that make his life possible are considered 'optional' under federal Medicaid law. They're on the chopping block if Congress moves forward with the proposed cuts. If the federal government cuts its share of Medicaid funding, our state will face a painful decision. We will either use more state dollars to fill the gap, or make cuts — fewer people covered, fewer services, lower provider pay. For Liam and others, that means less support, fewer community programs and a greater risk of institutionalization. Even with Medicaid, it took our family years to find a supportive care agency with an opening. These services are already stretched to the limit. Some Republican members of Congress are advocating for hard caps on Medicaid costs which would further degrade these essential programs. Medicaid is not just an insurance program. It is the infrastructure that makes independent living possible for people with disabilities. And it is already under strain. Here in Wisconsin, some disability advocacy organizations have gone months without federal funding due to administrative budget cuts. The signs are all around us: The safety net is fraying. If Congress ultimately cuts federal Medicaid spending, we will witness the unraveling of vital support systems: most critically, Home and Community-Based Services. For thousands of people like Liam, this would mean being forced from their homes, with many facing the possibility of institutionalization. Keeping people in their homes has been a bipartisan issue for decades. Home and Community-Based Services are both significantly cheaper and more empowering for our community-members with disabilities. I urge our elected officials — especially those who have said they want to protect 'the vulnerable' — to stop these irresponsible cuts to Medicaid. Liam's life, and the lives of so many others in Wisconsin, depend on it. SUBSCRIBE: GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX
Yahoo
04-05-2025
- Health
- Yahoo
RFK Jr.‘s ignorance about autism is bad enough. Republicans' Medicaid cuts are worse.
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
