Mind the Gap: Activists Rally For Paid Parents in Oregon
Plus: Idaho family caregiver program to end; Aspiring doctor with CP blocked by institutionalists; Study says parents of disabled kids struggle to play bills;
We rolled out 50-plus people deep to the Oregon State Capitol on Tuesday to advocate for the passage of Tensy’s Law, SB 538. It was awesome to see so many folks in eye-catching yellow, the color of developmental disabilities services.
Unfortunately, the state is nearly half a billion dollars short of its earlier prediction for the budget so there’s a lot of scrambling right now. But with a $10.3 million ask that would allow 1,000 kids to be on the Medicaid waiver that allows legally responsible relatives (i.e. parents) to be paid, we are keeping our fingers crossed that we can get this through by the end of June.
On Monday, a smaller contingent showed up to the Joint Ways and Means Human Services Subcommittee to watch them approve a transfer of $30.9 million into Oregon Department of Human Services under a “spring rebalance” and “current service level adjustment.” This means that the services ODHS promised ended up costing more than they thought.
We are trying to get legislators to see that we, too, are a “current service level adjustment.” Nothing in the bill would increase services — it would simply provide a pathway to actually receiving them.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From News From the States: “Idaho parental disability caregiver program to end, following federal approval”
A program that lets Idaho parents and spouses serve as paid caregivers is set to end in two months.
The federal Centers for Medicare and Medicaid Services, or CMS, last week approved the Idaho Department of Health and Welfare’s request to end Idaho’s program.
The program, called the Family and Personal Care Services program, allows spouses and parents to be paid caregivers for their family members with disabilities. Nearly 1,200 Idaho children were enrolled in the program in October, a number that has spiked in recent years.
[…]Idaho officials encourage families to reach out to direct care agencies they’ve worked with in the past to see if they have availability, [Idaho Medicaid Deputy Director Juliet Charron at the Department of Health and Welfare] said.
“CMS determined Idaho’s amendment maintains beneficiary access to needed personal care services through other Medicaid authorities and aligns with the state’s goals of simplifying service delivery and strengthening its oversight of the state Medicaid program,” a CMS spokesperson told the Sun.
[…]But those options won’t work for families, said Nathan Hill, a disability advocate who is a paid caregiver for his son with disabilities.
Direct care agencies don’t have enough staff to fill in, he told the Sun in an interview Monday. And having parents or spouses care for other kids with disabilities can create fraud, he said.
“Nobody knows my child like me,” Hill said.
And outside caregivers are hard to come by, and often don’t stay long, he said.
Instead of looking to end the family caregiver program, he said Health and Welfare should’ve asked the Idaho Legislature for more funds to run it.
And he said he’s still skeptical of Health and Welfare’s claims of fraud and abuse within the family caregiver program, saying the agency hasn’t produced evidence of substantial amounts of fraud.[…]
• From The Washington Post: “Families of disabled children frequently struggle to pay medical bills”
Families of children with disabilities were nearly twice as likely to report financial hardships as families of those without disabilities, according to a recent study published in JAMA Network Open.
Analyzing data for 22,670 children ages 5 to 17 from the 2019-2022 National Health Interview Survey, researchers recently found that some 22.3 percent of families with children who have disabilities experienced financial hardship. In comparison, about 12.6 percent of families with children who don’t have disabilities faced such difficulties.
[…]The findings suggest that current insurance is “inadequate” for disabled children and that the situation could get worse, the study says.
“Proposed cuts to the federal contribution to Medicaid would likely exacerbate the financial distress of these families,” the authors write.[…]
• From NPR: “One woman's fight to remove barriers for aspiring doctors with disabilities”
All through her 20s, Taylor Carty chased her dream of becoming a doctor.
Carty, now 30, was diagnosed with cerebral palsy when she was a baby, and was inspired by the many doctors and health care professionals who helped and encouraged her.
"I knew it was the path I wanted to pursue," she says.
In 2022, it looked like her dream was about to become a reality. She was accepted to Wayne State University School of Medicine in Detroit. Her grandfather, who was a physician, attended medical school there.
"I was ecstatic because it was the culmination of just years of hard work and my dream of potentially helping children and young adults with disabilities," Carty says.
[…]After a year of back and forth, Wayne State rescinded her acceptance in 2023.
"It was heartbreaking," Carty says.
Ten months later she filed a discrimination complaint with the U.S. Department of Justice.
[…]Since 2021, the Association of American Medical Colleges has encouraged medical schools to update their technical standards to be more inclusive of students with disabilities.
A team of researchers is looking into how many schools have followed the AAMC's recommendations. Carol Haywood, an assistant professor at Northwestern University's Feinberg School of Medicine, is one of those researchers.
"One thing that we're seeing is that there has not been a lot of documented activity to update technical standards, despite the recommendation in 2021 to do so," Haywood says. "By and large, most schools still have a majority of standards that are restrictive to students with disabilities."
But many doctors who have disabilities say the representation of disabled physicians is crucial to the profession.
Dr. Vovanti Jones is a physical medicine and rehabilitation specialist at the University of Missouri. Jones has muscular dystrophy.
She says many of her patients suddenly find themselves with a disability or unable to walk.
"I do think my patients build a different relationship with me than they do with my able-bodied colleagues a lot of the times," says Jones, who uses a wheelchair herself.
[…]Taylor Carty is now working on a Master of Public Health degree at UCLA. She says she wants to create change through policy to help more people with disabilities become physicians.
"I know there's a young child who is putting on that stethoscope," she says, "and I want to make that accessible for them."
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