Parents Were The Best Caregivers. Idaho Fired Them Anyway.
Plus: Families await states reaction to "big, beautiful bill"; Alleged $100M theft of disabled kids' money hits a roadblock
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From USA Today: “They don't need Medicaid. But their kids do.”
Stacy Staggs's 11-year-old daughter will never eat or breathe on her own.
Five times a day, Staggs or a nurse feeds her daughter, Emma Staggs, doctor-prescribed formula through a feeding tube at home. The formula comes at $25 per bottle, amounting to $125 per day.
The formula is covered through Medicaid, a program jointly funded by the federal government and states, which faces severe cuts through President Donald Trump's Republican-backed and recently passed reconciliation package. The law directly impacts nondisabled adults who must get a job or qualify for an exemption in order to maintain Medicaid coverage. But advocates are worried about how vulnerable populations might be harmed as states manage funding shortfalls due to other provisions in the law.
[…]Stacy Staggs is worried that [North Carolina’s Katie Beckett waiver] could end up on the chopping block.
“We would have to take out loans, sell the house and move in with my mom,” Staggs said. “We would go into medical bankruptcy to keep Emma alive.”
[…]Officials from North Carolina's Department of Health and Human Services have not said whether the waiver will be cut due to reduced Medicaid revenue. James Werner, a spokesperson for the department, said in an email to USA TODAY officials are "reviewing the final legislation to determine its full impact on the state and its residents."
"These cuts not only impact the people that rely on them directly but also strain the systems and communities that hold us all together," Werner said.
Millions of children and adults with disabilities enrolled in Medicaid rely on the medications, equipment and staff the program covers to stay healthy, survive and be active members in their communities. Without in-home help, and sometimes even with it, family caregivers − frequently mothers − often pick up the slack, switching jobs or leaving their careers behind to care for their kids with special needs. The cuts to Medicaid could exacerbate that reality.[…]
• From the Idaho Statesman: “Idaho parents were paid to care for their disabled children. Those days are over “
From 8 a.m. until late at night, Nathan Hill performs countless tasks for his 16-year-old son, Brady. Some of the tasks are small — things most people “take for granted that our kids can do,” Hill said, like popping Brady’s pimples when he gets acne outbreaks.
Others could mean the difference between life and death. A failure to properly maintain a tube into Brady’s windpipe, Hill said, could be fatal.
[…]For years, the family tried to patch together care for Brady however they could. Soon after Brady was diagnosed, Hill left his job as a remodeling contractor to find flexible jobs that would allow him to work from home, where he could oversee a revolving door of outside caregivers. When they call in sick or quit after a few weeks — a common occurrence, he said — he steps into the breach[….]
Medicaid paid for those outside caregivers, but it wouldn’t pay for parents like Hill to do the work themselves — until the COVID-19 pandemic hit. In 2020, Medicaid made an exception to its rules, allowing family members to get paid to care for their disabled children or spouses. Finally, Hill said, he could provide his son with consistent, high-quality care and greater privacy, without outsiders coming in and out of their home at all hours.
Now, those days are over. The Health and Welfare Department shuttered the program July 15, prompting families to scramble for alternative care.
[…]Hill had advocated for over a decade for Medicaid to change its policy, arguing that parents were the ones providing their children’s care whether they were paid or not. But without the income, they had the added stress of holding down a day job while searching for and training outside caregivers of inconsistent quality. Forcing parents to hire outside caregivers “is a racket,” Hill told the Statesman, because parents ultimately end up providing the care anyway.
“You can’t even hire enough nurses,” Hill said. “They don’t exist.”
[…]Health and Welfare told the Centers for Medicare and Medicaid Services that cutting the program is an effort to conserve and responsibly steward taxpayer money. But Shannon French, a Meridian single mother who provided care for her children with Down syndrome and autism, argued that ending the program would just push families to rely more on other social programs.
As a caregiver, French received $11.50 an hour from Medicaid. Without that income, and without the ability to find an outside caregiver so that she can take a job outside the home, she will now be eligible for food stamps and Medicaid insurance of her own. Her children, she told the Statesman, will be eligible for social security income because she no longer has an income. […]
• From CBS News: “Firings at Trump's DOJ complicate case against Florida man accused of bilking kids with special needs”
An ongoing purge of federal prosecutors from the Justice Department has impacted the criminal case against a Florida businessman accused of fleecing children with special needs.
The latest wave of firings included the prosecutor who was helping lead the criminal case against Leo Govoni, whose scheme allegedly bilked approximately $100 million from a fund to help people with disabilities.
[…]Amparo Perales, a mother whose son Javier has needed care for cortical blindness and severe encephalitis, said her family lost $2 million in the scheme. Perales told CBS News she was "shocked" by [Prosecutor Michael] Gordon's firing.
"These victims already have difficult lives and futures. A delay in the legal process is detrimental to the well being of the victims," Perales said.
Rebekah Bowman of Florida, whose son, Kienen Freeman, suffers from a severe seizure disorder, said she lost more than $1 million in funds for her son because of Govoni's alleged scheme.
[…]Prosecutors said Govoni founded the Center for Special Needs Trust Administration in 2000 and helped manage approximately $200 million in funds and more than 2,000 special needs trusts.
Prosecutors alleged Govoni used the organization's accounts as a "slush fund." Federal investigators said Govoni used the money to "purchase real estate, travel via private jet, fund a brewery, make deposits into his personal bank accounts, and pay personal debts."
In a series of letters filed with the federal court in Tampa last month, one parent of a person with special needs wrote, "I wish you could look into the eyes of my son and the many other medically needy victims and tell them that you're going to do the right thing and keep that man behind bars where he belongs."[…]
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