Trump budget bill: Will all 630,000 disabled kids continue to get home services?
Plus: Staten Islanders remember an exceptional medical mama and sudden Michigan policy shift closes a respite home for families
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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 New York Times: “Disabled Americans Fear What Medicaid Cuts Could Do to Them”
It takes round-the-clock care to keep 10-year-old June Rice alive.
[…]June has rare diseases that affect her intestines and brain. Her parents do what they can for her, but they have jobs and two other children — they can’t do it all. What allows June to live at home, go to school and hang out with friends is a Medicaid program in Utah that provides in-home nurses, a type of benefit called home- and community-based care.
That care means she doesn’t have to live in a nursing home or other medical institution, said her mother, Courtney Demmitt-Rice.
“We would do anything to keep that from happening,” she said. “But your body can only give so much.”
[…]June is one of about 4.5 million Americans who depend specifically on its home- and community-based care services [HCBS}, which often come through specialized programs known as waivers.
That 4.5 million includes many older Americans who are on Medicare too but can’t get the home care they need through that. But it also includes many working-age adults, and about 14 percent of the total are 18 or younger, according to the health research group KFF. [That comes out to about 630,000 kids on HCBS.]
[…]The White House and congressional Republicans said people with disabilities would not be affected by the cuts; the Trump administration maintains that states can balance their budgets just by reducing hospital reimbursements for Medicaid services. Theo Merkel, a policy adviser to Mr. Trump, said claims of a threat to home care were “intentionally misleading.”
But health care experts disagree. They said that lower hospital reimbursements would be insufficient for many states, and that cuts to home- and community-based care were a real possibility.
[…]The law technically allows states to expand home- and community-based care to some people who weren’t previously eligible. However, Alice Burns, a Medicaid expert at KFF, said that provision “does nothing to address the fiscal pressures states will face” from the law overall.
Reductions could come in several forms. States could place further restrictions on who qualifies for coverage, cover fewer hours of care or lower pay for home health workers. Or they could eliminate waiver programs altogether. Even at existing funding levels, hundreds of thousands of people are on waiting lists for waivers, and those lines could get longer.[…]
• From Bridge Michigan: “Families lament end of a 'lifeline’ for disabled Michigan children, adults”
Insufficient finances and an unexpected policy decision from the state are forcing the closure this fall of the last respite home in southeast Michigan for children and young adults with developmental disabilities, according to its leadership.
The Lahser Respite Home for Children has provided a reprieve for parents of children whose care was often round-the-clock. It is “a lifeline,” said Heather Webber, whose son, Eli, 14, has been spending a weekend or so each month at the home for about eight years.
[…]But the Farmington Hills-based Judson Center, which operates the respite home as well as a wide array of behavioral health, foster and adoption treatment and vocational services for individuals and families across southeast Michigan, had little choice, said Lenora Hardy-Foster, Judson’s president and CEO.
Judson’s $31 million budget each year had to cover the $70,000 to $100,000 losses at the respite home, which employed six full- and part-time staff. It also had to pay for insurance, utilities and maintenance on the six-bed home as though it operated around-the-clock, even as most families used it primarily for weekends.
Still, the biggest change came earlier this year when, after 38 years, a new inspector reviewed the operation — and asked state attorneys to review a waiver, or “variance”, issued by what was then the Michigan Department of Social Services, that had allowed Judson to serve people under 18 as well as people 19-26 years old at the same facility, said Hardy-Foster.
[…]Just more than half of the clients were in the older age group — and, effective this spring — were no longer able to stay at the home, Hardy-Foster said.
[…]Still, some parents said more could have been done to keep the respite home open — fundraising or more publicity to drive awareness and clients to Lahser. A change in state law that would have allowed the respite home to continue to serve people until they were 26 would have provided a more permanent solution, too.[…]
• From SILive.com: “Donna Cutugno, passionate Staten Island special-needs advocate who led tireless search for missing child, dies at 69”
Donna Cutugno, 69, a tenacious Staten Islander known for bringing people together to help others and a compassionate volunteer who mobilized supporters to search for an abducted Westerleigh child, died Tuesday following a short illness.
Cutugno had been a Westerleigh resident for 55 years. She was moved to unstoppable action, organizing the Friends of Jennifer group and searching for weeks when her neighbor, 12-year-old Jennifer Schweiger, a trusting girl with Down syndrome, disappeared from a street near her home in July 1987.
Young Jennifer’s body was found in a shallow grave about five weeks later on the grounds of the former Willowbrook State School, and a drifter named Andre Rand was convicted of her abduction. Despite this tragic outcome, Cutugno’s Friends of Jennifer group expanded, and continued for a decade assisting authorities in the search for other missing children both near and far.
[…]Cutugno was very influential in the creation of Staten Island’s first playground completely accessible by wheelchair in Graniteville. The park was dedicated “Jennifer’s Playground,’' in remembrance of Jennifer Schweiger, in 1997.
Her son, Devin, has cerebral palsy, and she was particularly passionate about helping those with disabilities. Her nagging persistence earned her a badge from the city Parks Department which read “challenger,’' her husband said.
[…]“Staten Island has lost a tremendous public servant,’' said Borough President Vito Fossella. ”Through her tireless advocacy and her support for disability groups and accessible spaces, like Jennifer’s Playground, Donna helped to make Staten Island a place where people with special needs can live with dignity."[…]
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