Study proves what family caregivers already know: The work is hard, underpaid and yet fulfilling
Plus: South Carolina schools struggle with rising autism rates while a California court ruling could expand special education options for religious families nationwide
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From KFF News: “Experiences of Direct Care Workers and Family Caregivers of Home- and Community-Based Services (HCBS)”
[…]Direct care workers perform demanding, high-stress work for low wages and often no benefits. There have been longstanding challenges finding enough direct care workers, and the COVID-19 pandemic exacerbated those issues considerably. In a 50-state survey of officials administering Medicaid HCBS programs, nearly all responding states reported they were experiencing shortages of direct support professionals, personal care attendants, and/or home health aides.
[…]Key findings from our groups, which cannot necessarily be generalized to all caregivers, include the following:
• All caregivers reported that they were drawn to the work because it allowed them to help people. Many paid caregivers started as unpaid family caregivers before becoming paid caregivers while many participants in the family and friend focus groups reported that they started caregiving because they were the only person available to help.
• All caregivers reported that their jobs were physically and mentally demanding and there were limited resources to help deal with challenges of caregiving. Caregivers described the difficulties of balancing paid and family caregiving responsibilities with caring for their other family and friends, professional commitments, and self-care.
• Caregivers in all groups reported struggling to make ends meet and that their compensation did not match the demands of the work. Some paid caregivers described this work as a steppingstone to a different career, while other caregivers described this career as more permanent, though nearly all agreed that there are little to no opportunities for advancement. Participants in the family and friends groups who were receiving payments from Medicaid reported that the Medicaid payments were lower than their earnings from other work. Not surprisingly, caregivers voiced support for polices to increase wages and benefits for paid caregivers and provide training and resources for all caregivers, which could be achieved through increased funding for Medicaid HCBS or other mechanisms.[…]
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• From The Post and Courier (South Carolina): “SC's autism population is growing. Can understaffed and underfunded schools meet their needs?”
[…James] Bello and his wife, Lauren Tricarico, are exhausted. They know their kids make impulsive decisions, and with news of a Greenville County autistic boy's death last month during school they are scared.
"My daughter actually starts the school system in Greenville next … well … ," James Bello said, his voice tightening over the upcoming decision on which school would be best for Serafina. "At this point, I don't know what I'm doing."
[…]Greenville County officials expressed shock and sorrow when it happened, but questions persist in South Carolina's growing autism community: Could this happen again, and are public schools — stressed with staffing shortages and special needs funding shortfalls — in a position to manage these challenging kids?
[…]Water — which Lowcountry special education teacher Tara Girch describes as an autistic child's "shiny, calm, happy place" — is a special danger: Autistic children are 160 times more likely to drown than neurotypical children.
[…]Officials at school districts across the state say they are doing their best to provide a range of special education services given teacher shortages and decades-long funding shortfalls by Congress to the federal Individuals with Disabilities Education Act. In 2021 alone, the difference between what IDEA was supposed to provide to South Carolina and what it actually provided was $417 million, according to the National Education Association.
Greenville County school board member Chuck Saylors called IDEA an "unfunded mandate."
"The original formula called for the federal government to pay for up to 40 percent of special education services," Saylors said. "It's never gotten above 19."
[…]In the 2020-21 school year, the number of school-aged children with autism in South Carolina's public schools totaled 9,859, or 9.73 percent of all students. That number jumped significantly by the 2022-23 school year to 11,818.
This growth is not unique to South Carolina. The CDC reported that the prevalence of autism in children nationally went from one in 44 in 2018 to one in 36 by 2020.
Theories vary about why the count is going up: Awareness is rising and diagnoses are getting more accurate, but studies also suggest increasing risk factors such as older parents and air and microplastics pollution.
"We definitely see it," Sachs said. "Teachers tell us they see it."
At the same time, recruitment and retention of special education teachers has hit critical lows. Statewide, special education teachers comprise 11 percent of all teachers, and 21 percent of all teacher vacancies, according to a recent study by the Center for Educator Recruitment, Retention and Advancement.[…]
• From the LA Times: “Ruling revives lawsuit to allow state funding for special education to go to religious schools”
A 9th Circuit Court of Appeals panel revived a lawsuit this week filed by Orthodox Jewish families that sued California education officials over the state’s policy of refusing to fund special education programs at religious schools.
Two religious schools and three Orthodox Jewish parents whose children have autism filed the lawsuit against the California Department of Education and the Los Angeles Unified School District last year. The parents sought to send their children to Orthodox Jewish schools and argued that the state’s policy of barring funding for religious institutions was discriminatory.
Other states allow certain religious private schools to receive special education funding. For decades in California, those dollars have only been permitted to go to schools that are nonsectarian.
Judge Kim Wardlaw, writing for the panel, ruled that California’s requirement burdens the families’ free exercise of religion. The panel’s decision sends the case back for reconsideration to a federal court that had previously rejected it.
Attorney Eric Rassbach, who represents the families in the lawsuit, called the court’s decision a “massive win for Jewish families in California.”
[…]The California Department of Education argued in legal filings that by not certifying religious schools to educate children with disabilities, which would be required for them to receive federal funds, it was upholding the “principle that the government must be neutral toward and among religions.”
[…]However, Wardlaw wrote in her ruling that the state failed to show that its nonsectarian requirement is “narrowly tailored to serve” the interest of religious neutrality.
Wardlaw added that it puts parents in the position of being forced to choose between an education for their disabled children and religion.
“Parent Plaintiffs are required to choose between the special education benefits made available through public school enrollment (and subsequent referral to a private nonsectarian NPS) and education in an Orthodox Jewish setting,” she wrote.
[…]“This is a game changing moment for our community and for religious families of children with disabilities — not only requiring change in the state of California but holding nationwide implications,” Teach Coalition chief executive and founder Maury Litwack said in a statement.
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