Will New Medicaid Red Tape Trap Parents, Cut Off Health Coverage?
Plus: Our monthly Where Is the Manual For This?! comic; What autistic suicide warning signs look like; How to support intimacy in young people with life-limiting conditions
When my twins were born, I learned that statistics don’t really matter to the individual. They may be helpful on a pubic health scale, but if you only have a one percent chance of an outcome happening, does that really matter if it happened to YOU? It is 100 percent of your experience.
All of our kids are one in a million — nay, one in a billion! — and so is the experience of parenting them. Thanks to their existence, we get such a unique lens through which to view the world. Our lives are richer, our stories more complex and our experience rare, unique and beautiful.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability Scoop: “Medicaid Changes Could Limit Access For People With Disabilities, Advocates Warn”
[…]Congress approved sweeping legislation last summer that includes nearly $1 trillion in Medicaid cuts. Central to the plan are so-called “community engagement” requirements stipulating that many Medicaid beneficiaries must prove that they are working, volunteering or going to school in order to qualify for coverage.
Now states are tasked with establishing systems to determine whether beneficiaries meet the new standards and there are big questions about how they will do so.
[…]The Centers for Medicare and Medicaid Services issued initial guidance in December. It specifically exempts individuals who are “medically frail” or who have “special medical needs” including those with physical, intellectual or developmental disabilities from the new rules. Parents, guardians, caretaker relatives and family caregivers of those with disabilities are also exempt.
[…]“The guidance provides no additional detail and simply re-states what is in the statute,” said Michael Lewis, vice president of policy at the American Association of People with Disabilities.
[…]A guide issued recently by the Bazelon Center for Mental Health Law and the Corporation for Supportive Housing […] recommend[s] that states:
- use existing data to verify eligibility rather than mandating new paperwork,
- provide assistance with applications and renewals as a reasonable modification
- and use broad definitions of “medically frail” and “special medical needs.”
States should also allow individuals to self-attest for exemptions and ensure that their notices, online portals and other communications are accessible, the guide indicates.[…]
• From LA Times: “Behind his smile, a silent crisis: Parents seek answers after autistic son’s suicide”
When Anthony Tricarico was diagnosed at 7 with autism spectrum disorder, his parents, Neal and Samara, were told that he might need extra support at school, so they made sure he got it. When doctors suggested therapies for his speech and motor skills, they sought those out too.
But when their kind, popular, accomplished boy began to experience depression and suicidal ideation as a teenager, no one told them that the same thinking patterns that powered many of Anthony’s achievements might also be amplifying his most harmful thoughts, or that the effort of masking his autism could be hurting his mental health.
None of the people or organizations they contacted for help said Anthony might benefit from therapies or safety plans adapted for autistic people, or even that such things existed. They did not say that he might not show the same warning signs as a non-autistic teenager.
And only after he died from suicide in May 2024 did the San Diego County couple discover that autistic kids — particularly those like Anthony, whose disability is not immediately apparent from the outside — are more likely to think about and die from suicide, and at earlier ages, than their neurotypical peers.
[…]Children across the autism spectrum are far more likely to struggle with mental health conditions than their allistic, or non-autistic, peers. A 2021 study of more than 42,000 caregivers of children ages 3 to 17 found that 78% of autistic children had at least one co-occurring psychiatric condition, compared with 14% of non-autistic kids. Contributing factors include the stress of living in a world that’s sensorially overwhelming or socially impenetrable. Lights, noises, smells and crowds that others barely notice may cause incapacitating anxiety.
[…]There’s no clear protocol for families like the Tricaricos. There are therapists and psychiatrists specially trained in autism, but not enough to meet demand.
Researchers are, however, looking for ways to tailor existing therapies to better serve autistic kids, and to educate healthcare providers on the need to use them.
One starting point is the Columbia-Suicide Severity Rating Scale, the standard that healthcare professionals currently use to identify at-risk children in the general population. […]Schwartzman recommends that providers use a combined spoken and written screening approach at intake, since some autistic people find text questions easier to process than verbal ones.
[…]Another candidate for adaptation is the Stanley-Brown safety plan, a reference document where patients list coping strategies, helpful distractions and trusted contacts on a one-page sheet that can be easily accessed in a crisis. Research has found that people with a completed plan are less likely to act on suicidal thoughts and more likely to stick with follow-up care. It’s cheap and accessible — free templates in multiple languages can be easily found online.
[…]“Suicide prevention for autistic people is being accepted for who they are, being able to be who they are without masking,” Morgan said.[…]
• From MedicalXPress : “Why disabled young people with life-shortening conditions need better support for intimacy”
[…]For the past 15 years, I have worked with colleagues in the Sexuality Alliance, which advocates for the sexual and reproductive rights of disabled young people living with life-shortening conditions.
Our research, which was co-produced with disabled young people, shows that many feel unsupported and overlooked when it comes to their sexual and reproductive lives. Families and caregivers often report feeling unprepared.
In many cases, they had been told that their child would die, only to find that they were continuing to live, becoming teenagers and then adults. Professional staff, including nurses, doctors and therapists, were often unaware of these issues or felt anxious about addressing them.
[…]The young people we interviewed told us that they want to live life to the full, and that this includes exploring sexual intimacy and forming romantic relationships. They described this as a normal part of growing up, and many saw it as a rite of passage. They also explained how important intimacy can be for both physical and emotional well-being.
[…]Addressing the sexual and reproductive citizenship of disabled young people who were not expected to live into adulthood is sensitive work because it confronts longstanding taboosaround sexuality, youth and death. Disabled people frequently reported feeling marginalized, infantilized and treated as asexual. Many participants felt they were seen primarily as vulnerable rather than as people with desires, agency and rights.
[…]As part of our work, we co-produced resources to help young people and caregivers talk openly about sex and intimacy.
[…]Despite the risks and uncertainties they face, many young people see intimacy and relationships as central to their well-being and identity.[…]
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