Nevada bill would enable paid parent caregivers
Plus: Arizona approaching fiscal cliff with continued political wrangling over DD services; New York mamas rally as paid parent caregiving bill stalls there
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Also, this week, you’ll notice a theme in our news round up! Paid parent caregiving is still a hot topic as state legislatures across the nation wrestle with its implications. This was not by design — the three most relevant stories that I found in my internet ramblings this week all had to do with those efforts. I know mamas in the Arizona and New York efforts, but not in Nevada. If you are in Nevada, reach out! I’d love to hear from you.
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 Sun (New York) : “Caring for medically fragile children: Moms take action”
As legislative discussion closes in on spring budget deadlines, mothers of medically fragile children here and throughout the state are knocking on doors.
They're hoping lawmakers will enact specific new legislation to allow compensation for the at-home care they provide.
The Complex Care Assistant Bill was co-sponsored by both Assemblyman Billy Jones and Sen. Dan Stec. It has languished in committee.
A common sense measure, it could help stabilize families who take care of medically fragile children at home.
Plattsburgh resident Geana Brassard Dyer is a registered nurse, but she paused her career to care for their family's son, Ronin, who has Cockayne Syndrome, a rare, genetic illness that leads to premature aging, growth failure and impaired nervous system development. The condition presents a wide range of physical and developmental health challenges that increase as time goes on.
[…]In Saranac, Kelsey Neri and her husband Shawn have had to leave their jobs and business endeavor to care for Cali, who is four years old, the same age as Ronin. Their daughter was diagnosed with severe encephalitis in 2022, the condition caused by Powassan virus transmitted by a tick bite. Several other local families face similar plight in managing other severe conditions with their children.
[…]"Cali has access to 168 hours of at-home nursing care a week through Medicaid for at-home nursing care," Neri said. "We've interviewed over 30 nurses and we don't have a single one available. We've had a couple people come for a few shifts, but they left. The distance and the amount of time Cali spends in-patient at hospitals or traveling is too much time off. We literally haven't had a single nurse come in and say 'I got this'," Neri said. "And most have asked to have a parent present at all times."
[…]Based in Albany, Shannon Reed-LaVigne created an organization called Voices of the Medically Fragile of New York State. She's assembled over 300 families and helped draft the Complex Care Assistant bill.
[…]This year is the second session that they have been pressing for decisive legislative response.
"We are a much smaller sector of the disabled population, and I don't think people know that families are running ICUs in their home," Reed-LaVigne told The Sun.[…]
• From Reno Gazette Journal: “Nevada bill would pay parents to care for disabled children, fill nursing shortage”
Families with severely disabled children face extra burdens in Nevada because of the lack of nurses to provide round-the-clock care.
A bipartisan bill at the Legislature hopes to fix one of the main problems — it would allow parents to be paid caregivers, something barred under Nevada law but allowed in other states.
“In two-parent households, one parent is often forced to leave their employment to provide for their child’s needs full-time,” said Rebeka Acosta, a Las Vegas board-certified patient advocate, in a letter to the Legislature.
One-parent households face an even tougher choice: whether to put their child into institutional care.
[…]Nevada’s nursing shortage made it hard and stressful to find appropriate care for her son. Her husband eventually quit his job to be with Rico full time.
“If Nevada were to allow for parents to be paid caregivers of disabled or chronically ill children, my family would benefit immensely,” Garcia said Thursday.
“Overall, this bill would not only ensure that my son keeps getting care provided by my husband but also allow for peace of mind that the financial needs of my family are being met.”
[…]Even though Medicaid will pay for home-based care, families tell [University of Nevada, Reno’s Center for Excellence in Disabilities researcher Grace Larkins] they can’t find it.
“The workforce shortage is in such a crisis throughout the country,” Larkins said, “but it’s even more acute in Nevada.”
Sen. Angie Taylor said a story similar to Garcia’s inspired her to put forward the paid-family-caregiver proposal, Senate Bill 185.
[…]The Nevada Department of Health and Human Services attached a fiscal note to the bill saying it will cost about $17 million every two years. It assumes 100% participation by parents who could apply for Nevada Medicaid reimbursement.
[…]Those interested in the caregiver bill can register support, opposition or neutrality by visiting the page for Senate Bill 185 on the Nevada Legislature's website and clicking the "Opinions" button in the upper right corner.
• From the Arizona Luminaria: “Deadlock endangers lifeline for 60,000 disabled Arizonans unless lawmakers act “
[…]If the Arizona Legislature doesn’t intervene, families could lose [home and community based services] care starting in May. The Arizona Division of Developmental Disabilities faces a $122 million shortfall to sustain the program for May and June before a new fiscal year begins.
Costs have ballooned as federal funding dropped. More people are eligible for services. Worker pay has increased. And the Parents as Paid Caregivers program — seen as a lifesaver during the pandemic — proved successful and expensive.
[…]Officials warned last fall that Division of Developmental Disabilities services were in financial danger. And when the Legislature opened its session in January, the state Department of Economic Security gave lawmakers the bleak financial picture: The money thousands of disabled Arizonans rely on, runs out in May.
Democrats sounded the alarm and mobilized families, nonprofits and others to reach out and tell their stories as they have now done for weeks without resolution.
[…]House Appropriations Committee Chairman David Livingston, a Republican from Peoria, has called on Gov. Katie Hobbs to explain the shortfall and work with Republicans on a solution.
[…]In a letter to the governor last month, Livingston said Hobbs’ administration “has made major financial commitments without consulting the Legislature and now families are staring down the consequences of an unsustainable program.”
[…]Hobbs refutes his claim. Instead, she said, the budget shortfall blame belongs to the Republicans who have diverted millions of taxpayer dollars to their favored Empowerment Scholarship Accounts Program, spending public money on private school and homeschooling.
“It is outrageous that the legislative majority continues to hold Arizonans with autism, cerebral palsy, and Down syndrome hostage to their political stunts,” Hobbs said in a news release Wednesday.
[…]The Parents as Paid Caregivers program started as a federally funded temporary program in Arizona in 2020 when providers did not have enough caregivers who wanted to go into people’s homes because of the COVID-19 pandemic. It became permanent in February of 2024 but needed about 30% of its budget covered by the state to survive.
The program pays parents to care for their children at home and program cuts could conflict with what some lawmakers intend, said Brandi Coon, co-founder of the Raising Voices Coalition, a disability advocacy group in Phoenix. The caregivers program has helped solve a workforce shortage and can reduce hospitalization and stays in long-term care facilities, said Coon, whose 10-year-old, Tyson, has special needs.
“If we want to continue with programs that are ethical, family centered, economical … we need to support the funding that allows people to stay within their environments,” Coon said. […]
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