Bradley Cooper Announces A New Caregiver Doc And Indiana Is Sued Over The Loss of Parent Pay Program
Bradley Cooper Announces A New Caregiver Doc And Indiana Is Sued Over The Loss of Parent Pay Program
Plus: Special education shortages hit rural districts hard
We’re back with your news round up this week. Also, Oregon readers, make sure to come see me Sunday, July 4 at 2 p.m. at the Front Porch stage at the Oregon Country Fair. I’ll be leading a panel discussion on Disability & Festival Access where we’ll talk about the good, bad and ugly side of trying to attend an outdoor festival with a disability.
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 Hollywood Reporter: “Bradley Cooper Producing PBS Documentary About Family Caregivers”
Bradley Cooper is teaming up with PBS to produce a documentary about the millions of people who provide unpaid care to family members.
The documentary, Caregiving, is in production and is set to air in 2025 on PBS stations. WETA, the public broadcasting station in Washington, is producing the film with Cooper’s Lea Pictures and Ark Media (Finding Your Roots).
The film will examine both systemic issues within the care system — where more than 50 million Americans provide unpaid care to family members — as well as tell personal stories of people who care for loved ones.
Cooper’s involvement also stems from personal experience: “When my father was diagnosed with cancer, that was a wake-up call for me, one that really opened my eyes to the world of caregiving,” the Oscar nominee said in a statement. “Everyone will end up caring for a loved one at some point in their life. The level of loneliness can overcome an individual going through this — it’s overwhelming. Raising this conversation on a national level will help, and together, I believe we can make a difference. I’m extremely proud to produce this documentary. Together, we can help raise the banner for caregivers.” […]
• From NPR: “Why children with disabilities are missing school and losing skills”
[…]In some ways, Emma is a typical teen. She loves Disneyland and dance class. But she has already faced more adversity than some classmates will in a lifetime.
"All of October and all of November, there was no school because there was no aide" says Emma's mother, Melony Lenover, leaning her elbows into the kitchen table.
[…]Melony Lenover says her daughter's special education plan with the district guarantees her a dedicated, one-on-one aide. But the district is in the throes of a special education staffing crisis. In the fall, without an aide, Emma had to stop school. As a result, she missed out on the dance and art classes she loves and regressed on her communication device.
The fact that a district could struggle so mightily with special education staffing that students are missing school – that's not just a Del Norte problem. A recent federal survey of school districts across the U.S. found special education jobs were among the hardest to staff – and vacancies were widespread. But what's happening in Del Norte is extreme. Which is why the Lenovers and five other families are suing the school district, as well as state education leadership, with help from the Disability Rights Education and Defense Fund.
[…]In December, after the lawsuit was filed, district special educator Sarah Elston told the local Wild Rivers Outpost: "Just a few days ago I had two or three [aides] call out sick, they weren't coming to work, and so this starts my morning at 5:30 having to figure out who's going to be with this student... It is constant crisis management that we do in special education today."
Melony Lenover says she knows supporting Emma can be challenging. But decades ago, Congress made clear, through the federal Individuals with Disabilities Education Act, that her daughter is legally entitled to that support.
The federal government said it would cover 40% of the cost of providing special education services, but it has never come close to fulfilling that promise. In 2023, the National Association of Elementary School Principals said, "Since the law was enacted, the closest the federal government has come to reaching the 40 percent commitment was 18 percent in 2004-2006, and current funding is at less than 13 percent."
All this leaves Melony Lenover chafing at what she considers a double standard for children with disabilities.
"If it'd been one of my typically-functioning kids who are not in school for two months, [the school district] would be coming after me," Lenover says. […]
• From the Indiana Chronicle: “Indiana Disability Rights, ACLU file complaint over FSSA’s attendant care changes”
Indiana Disability Rights and the American Civil Liberties Union of Indiana (ACLU) filed a complaint against the state Friday alleging that changes to an attendant care program threaten the safety and well-being of medically complex children.
“Children with medically complex conditions often need near constant care and supervision. Parents and families have for years been able to cobble together a patchwork of services and caregivers, including serving as paid caregivers themselves, to ensure their children have what they need to live safely in the community,” said Melissa Keyes, the executive director at Indiana Disability Rights. “Now, FSSA is throwing a wrench in those plans without ensuring there are appropriate alternatives available.”
Indiana’s Family and Social Services Administration (FSSA) previously allowed parents to be paid hourly wages as Legally Responsible Individuals through an attendant care program. In January, after the agency said ballooning program costs contributed to a nearly $1 billion Medicaid forecasting error, FSSA said it would transition families to Structured Family Caregiving.
That change would pay families a per diem below what what they received under the attendant care program. Under the latter, families had few guardrails on payments and FSSA said some parents charged more than 100 hours weekly. But families said they had few options with a shortage of other health care providers to fill the gaps.
[…One of the plaintiffs] “… E.R. is currently approved (and has been approved for some time) to receive 40 hours each week in skilled nursing services, even though he does not actually receive these services,” the filing reads.
[… The other plaintiff] is approved to receive 80 hours of care but his old nurse also moved out of state. His mother “made the difficult decision” to place him in one of the state’s two pediatric nursing homes for several months in 2020.
“Unfortunately, this placement proved to be a horrendous experience,” the suit states.
[…]Both families say that attendant care is their only source of income, since caring for their children keeps them from seeking outside employment. Each say that Structured Family Caregiving wouldn’t be enough to keep their basic needs met.
[…]“This policy not only ignores the critical needs of these medically complex children, but it also disrespects the incredible dedication of their parents who have become experts in caring for their unique situations,” said Tom Crishon, Legal Director at Indiana Disability Rights. “We are filing this lawsuit to ensure these children can continue to receive the care they need in their homes and communities.”
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