Indiana officially shuts paid parent program and a Pennsylvania family sues unsuccessfully to lift their hours cap
Plus: What a Nobel Laureate's 1950 memoir of medical motherhood can teach us today
Happy summer! If any of my Oregon readers are coming to the Oregon Country Fair, come to the Front Porch stage on Sunday, July 14 at 2 p.m. where I’ll be leading a panel discussion on Disability & Festival Access with paralympian Ravi Drugan and others. We even have a survey you can fill out to be part of the discussion!
Relatedly, I will be taking next Sunday off. Medical Motherhood will be back in your inboxes July 21!
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From the National Review (Opinion): “A Philadelphia Family’s Fight for Caregiving Freedom”
[…]Philadelphian Mohamad Alsyrawan is blessed. He is a nonverbal man with autism, Down syndrome, and other disabilities, and Medicaid authorizes him to receive 19 hours of funded personal care a day. He also lives with a lot of love. Much of his care is provided by his mother and sister. They help him bathe and pray. His mother cares for him from six every morning until five every afternoon. Then his sister takes over, from ten at night until the morning shift begins. Without the love of his mother and sister, Mohamad can become very anxious — shutting himself inside the bathroom and even picking at his forehead until he bleeds. But thanks to his mother and sister, Mohamad enjoys a life in the community, where he likes swimming and taking walks.
Mohamad’s mother and sister are inspired by their religion. Devout Muslims, they believe that intimate care should be provided by close relatives. They are willing to accept help, including from non-Muslims, but believe that, because they are able to “care for and protect” Mohamad, they “must do so.”
Pennsylvania Medicaid thinks Mohamad’s care is too, well, personal. It caps the number of hours that relatives and legal guardians can be paid for providing personal care. Mohamad’s mother and sister can be paid for no more than 40 hours a week each or 60 hours between the two of them. Mohamad’s mother brought a lawsuit challenging this, but Pennsylvania’s Commonwealth Court rejected it.
Pennsylvania is no outlier. In much of the country, even people with disabilities who direct their own personal care are not allowed to pay their legally responsible relatives. Shockingly, Pennsylvania’s policy is permissive compared with the rest of the country. Only twelve states permit a relative to be paid for personal care at all, and half of them adopted that policy only during the pandemic and are now reversing it.[*] Having a loving parent, spouse, sibling, or child willing to do dirty work is not enough: Families must allow strangers into the privacy of their lives or forgo public money.
This is not because of budgetary constraints. Medicaid is going to fund caregiving: The question is only whether it should discriminate against family members for the benefit of outside providers. As discussed below, letting families provide the same amount of authorized care can save taxpayers money and result in better outcomes. Additionally, while fraud is a legitimate concern for any public grant, states have decades of experience relying on counselors to ensure that families provide honest and effective service. […]
* EDITOR’S NOTE: According to the Kaiser Family Foundation, 39 states allowed paid family caregivers during the COVID-19 Public Health Emergency and 20 planned to continue the policies.
• From WRTV (Indiana): “FSSA addresses changes to Medicaid and Medicare waivers”
It’s a day that families of children with medically complex kids have been dreading. July 1st was the deadline for families to switch from the Attendant Care Program which was under the Medicaid aged and disabled waiver. Now, families have to take part in the Structured Family Care program under the Health and Wellness waiver.
"FSAA has been supporting individuals, families and their advocates who previously received attendant care from a legally responsible individual which is no longer permitted,” Cora Steinmetz, the Director of the Office of Medicaid Policy and Planning for Indiana said.
The mandate came down earlier this year. FSSA had a nearly billion budget shortfall. Families feel FSSA hasn’t been transparent, and the transition has been confusing.
"This transition has been so clunky and there has been so much miscommunication that almost across the board the agencies providing structured family care are scrambling to get schedules up,” Mary McDonald who Cares for her medically complex daughter Olivia said. “People aren't able to clock in. Today people are trying to connect with their agencies with their case managers to figure out what is happening."
McDonald was taking part in the attendant care program. She says her medically complex daughter, Olivia, needs around the clock care.
She was paid hourly for that but now that she is required to switch to the structured family care program, she will make flat rate every day. […]
• From St. Martin’s Press (via Literary Hub): “What Pearl S. Buck’s Memoir Can Teach Parents of Disabled Children”
When my daughter was a year old, my mother handed me a worn-out copy of Pearl S. Buck’s The Child Who Never Grew (1950). The act of giving me this book felt significant, like an inheritance that she passed on to me. She, as the mother of a child with disabilities, passed it on to me, another mother of a child with disabilities.
[…]My mom felt sheepish about giving Buck’s memoir to me. She wasn’t sure what I would think of it, but she wanted me to have it.
[…]From the 1930s through 1950s, Buck was one of the most important American women writers of her time. Her novel The Good Earth (1931), about the hardscrabble lives of Chinese peasants, was drawn from nearly forty years of living as an American in China.
The Good Earth won a Pulitzer Prize and its success led Buck to become the first American woman to win a Nobel Prize for Literature in 1938.
[…Her memoir about raising a child with intellectual disabilities, The Child Who Never Grew, was one of her few books that continued to be read by a small but devoted group of readers long after Buck’s heyday.
[…]Buck’s book stands out for its emotional forthrightness. The other narratives out there by the 1970s tended to be treacly sweet and not to my mom’s liking at all. Pamphlets and mothers’ groups tended to push a narrative of self-sacrifice. My mom was not the sacrificial type and the stories of loss and grief and sadness didn’t speak to her. Buck’s book wasn’t perfect either, but it at least felt honest to my mom. Buck was determined to find a better life for her daughter and she was equally determined to make a life for herself.
The solution Buck found was to place her daughter at the Vineland Training School in New Jersey. The Child Who Never Grew describes Buck’s painstaking search for a home for her daughter. The American doctors that she consulted told her that her daughter would never have a “normal life” and that the best thing she could do was to put her in an institution. Her Chinese friends disagreed, believing that a child was best kept with her family.
[…]The Child Who Never Grew is a rare, intimate look at the emotions and decisions that a mother faces in the wake of a disability diagnosis in the early twentieth-century, but it is also a long justification for prioritizing her life as a writer. […]
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