Coalition urges Biden for more funding amid surge in discrimination cases; Hospital sues to place teenager out-of-state; Post-diagnosis parenthood is not what you'd expect
Coalition urges Biden for more funding amid surge in discrimination cases; Hospital sues to place teenager out-of-state; Post-diagnosis parenthood is not what you'd expect
News briefs for the week of Feb. 25
Each week, we showcase a picture of real life from the Medical Motherhood community. If you have pictures of your kids from when they were younger that they now agree can be used online, please send them in. What do you want people to know about the #medicalmom life?
Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Slate.com: “So Your Child’s Been Diagnosed With a Rare Genetic Disorder”
You did not think you’d be here in the hospital, holding a sheaf of papers printed out by a doctor and handed to you, a report on your new child’s genetic code. The letters and numbers are meaningless, like a browser-suggested password—STXBP1 in our case—but you will come to know them well. You will remember this moment for the rest of your life.
[…]Yet, without knowing quite when it has happened, you will recover and deepen the feeling you had when you first met your baby—the sense that she is perfect, that she had to be yours, and that there is no replacement you could ever imagine. For beneath the diagnosis there is a child who wants to be loved and whom you will love more by the day. You will revel in her smile, her curls, her sounds. You will realize that she loves you back, even if she cannot say so and may never be able to. That is another thing you’ll learn: verbal communication is overrated. The face tells so much.
There will be hardship ahead: more hospital stays, more missed milestones. But much of day-to-day life will merely be annoying. You will spend hours on the phone with your health insurance company, with doctors’ offices, and with pharmacies, and sometimes all three at once, after you’ve perfected the art of the nonconsensual conference call. You will spend more money than you could have imagined on prescription drugs, on physical, occupational, and speech therapy, and on gadgets designed to accommodate your child’s needs, from a “gum stimulator” to a “sensory brush” to “adaptive shoes.” No one will pay you for any of the time wasted or money lost. There is no tax break. There are no extra vacation days. You just take the hit.
But logistical challenges are much easier to deal with than existential crises. And the existential crisis that blinded you on diagnosis day will fade away as you learn that you can in fact continue to exist. You will no longer ask, “How can I go on?” but, “Where is the nearest 24-hour pharmacy that has Clobazam in stock?”
As you will discover, there is a singular power to facing an experience you initially assumed would ruin you and finding out that it has not done so. It is possible to imagine worse setbacks, of course—death comes to mind, and oh, it will—but many of the things you once considered devastating will no longer look that way. No layoff or relationship trouble could feel so bad, to say nothing of a workplace gripe, traffic delay, or rude email. Recognize and channel this imperturbability. It is your new superpower. […]
• From NPR.org: “A hospital is suing to move a quadriplegic 18-year-old to a nursing home. She says no”
From her hospital bed, Alexis Ratcliff asks a question: "What 18-year-old gets sued?"
Ratcliff is that 18-year-old, sued by the hospital in Winston-Salem, N.C., that wants her to leave.
Ratcliff, a quadriplegic who uses a ventilator, has lived at Atrium Health Wake Forest Baptist since she was 13. She wants to leave, too. But not to the nursing home the hospital found for her in another state.
She wants to live in a home nearby, close to her family and school.
When she refused to move to the distant nursing home, the hospital sued her for trespass.
The standoff in North Carolina shows the failure of states across the country to adequately address the long-term-care needs of younger people with complex disabilities. This year marks the 25th anniversary of a U.S. Supreme Court opinion that found states have an obligation to help people with disabilities — young and old — live, whenever possible, in their own homes and not in institutions like hospitals and nursing homes.
A 2010 NPR investigation found that states and the federal government failed to live up to the new requirement to help people live at home. Ratcliff's case, and new analysis by NPR, shows that progress in the states remains spotty, especially for people with the most complex disabilities.
[…]Moving to another state would make it difficult to get back to North Carolina, says Lisa Nesbitt of Disability Rights North Carolina, which is representing Ratcliff. If Ratcliff moves to a nursing home in another state, Nesbitt says, she becomes a citizen of that state and gives up her North Carolina Medicaid. That would make it unlikely she could return to North Carolina, according to the response to the hospital's lawsuit.
"Right now, there is no known path back for her if she leaves the state," says Nesbitt.
There's another key player here: the state Medicaid agency. It's responsible for making an effort to help people like Ratcliff who are eligible for Medicaid get long-term care — in their own homes, not in a hospital or a nursing home.
NPR asked to speak to someone at North Carolina's Medicaid agency about what they're doing to help Ratcliff get out of the hospital.
The answer: "No comment." […]
• From Disability Scoop: “Ed Department Needs More Funding To Investigate Disability Complaints, Advocates Say”
Federal education officials need twice as much money to keep up with a flood of complaints alleging discrimination against students with disabilities and others in the nation’s schools, advocates say.
In letters to President Joe Biden and key leaders in Congress, 91 disability and civil rights organizations say that funding for the U.S. Department of Education’s Office for Civil Rights should be doubled next year.
[…]The Office for Civil Rights received 18,804 complaints in 2022, the most ever, according to the office’s most recent annual report, including 6,390 complaints related to disability discrimination.
[…]As of last week, the Office for Civil Rights said that it is currently investigating 4,775 complaints of disability discrimination at elementary, secondary and postsecondary institutions.
[…]Biden is expected to issue his budget request for 2025 next month. However, so far this year, lawmakers have failed to reach an agreement to fully fund the government, instead relying on a series of short-term deals.
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