Funding models broken from coast to coast
Funding models broken from coast to coast
New Jersey parents say their Medicaid system favors expensive institutions; Oregon parents say they can't get a break; Nevada parents say their special education system doesn't include their kids
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From NorthJersey.com: “Why it's harder to care for a disabled child in NJ: State funding is 'broken,' parents say”
In New Jersey, families of children with severe disabilities have two main options for their care: a group home system that many see as unsafe and understaffed − or paying for care at home.
But there's a catch: Thanks to state rules, they won't be able to pay their home aides nearly as much as group-home agencies can pay their staff.
That's unfair, disability advocates say, and forces families into institutionalized care. It's a discrepancy the community − and Gov. Phil Murphy's own disability watchdog − are urging the state to rectify as budget negotiations continue.
The funding allowed for at-home care is "divorced from reality," said Paul Aronsohn, New Jersey's ombudsman for individuals with intellectual and developmental disabilities. "It's not much money, and it makes it harder for families to find staff."
Families who opt for at-home care − officially known as "self-directed" − can tap into a $2.4 billion pool of state and federal aid to hire people to take care of their adult children. Parents like Karen Monroy, an advocate for this approach, said they choose that route because of its promise for more personalized, compassionate care.
[…]Under New Jersey rules, people who want to hire their own caregivers will be reimbursed by the state for up to $25 an hour per aide, while group home agencies can get up to $57 an hour.
[…]The $25 per hour maximum, set by the state four years ago, is based on wage data for the cost of at-home care, including statistics from the federal Labor Department, said division spokesman Tom Hester. He noted that it can rise to as much as $48 an hour when a person's medical needs are extreme.
[…]But families interviewed for this story spoke of having to fight the state for bigger budgets and the difficulty of funding proper staffing for people with more severe disabilities. Aronsohn said it's "not easy to get" that extra money, especially under the state's strict guidelines.[…]
• From 8 News Now (Las Vegas): “Parents take Las Vegas-area special needs school to court claiming ‘misrepresentation of services’
[…]After being on waitlist after waitlist to get seen by a specialist for their teenager on the spectrum, the Stransky family said they did whatever it took to find a school that had the proper resources for their child, but said they were let down.
[…]The family said their most recent obstacle was with New Horizons Academy.
It’s a private autistic school also known as New Horizons Center for Learning near Rainbow and Charleston boulevards.
[…]The Stransky’s told 8 News Now it was out of desperation that this happened to them.
“There is an extreme lack of resources,” they say.
And the family isn’t alone.
“That is a fact, I’ve been living it for the last 12 years,” Melody O’Connor said.
She is the mother of now-16-year-old Angeleena O’Connor.
“Angelina has been on so many waitlists for speech therapy, ABA therapy, [and] it took me a while to get her into a psych evaluation,” she said. “She has autism, cerebral palsy, frontal lobe epilepsy, ADHD,” says O’Connor.
She’s still on the waitlist to be seen by specialists. O’Connor blames her daughter’s lack of progress on limited resources in Southern Nevada. […]
• From InvestigateWest (Oregon and Washington): “Staff At Providence Center For Medically Fragile Children Sound Alarm Over Shrinking Space, Families Turned Away”
[…]June, 18, is considered medically fragile due to a rare seizure disorder and cerebral palsy. That legal designation means she requires the highest level of medical care, all day every day, and qualifies for Medicaid to receive it.
Outside of a hospital and her home in Southeast Portland, there are few places equipped to provide it.
[…]Until recently, the Straceners felt fortunate to have the Providence Center for Medically Fragile Children nearby. It’s Oregon’s sole skilled nursing facility that is able to properly care for June, and it’s one of a handful of nursing facilities in the country created specifically for medically fragile children. In Oregon, the Department of Human Services’ Office of Developmental Disabilities provides case management for 111 children that it has determined are medically fragile, but the Providence center has also taken in children from Washington.
“It’s not my favorite thing for her to go there,” said June’s mom, Tina Stracener. “But I felt like she was very well cared for.”
The Straceners, however, can’t place June at the facility anymore. Providence has closed the 58-bed Center for Medically Fragile Children to families seeking respite or short-term stays, even though its population of long-term residents is dwindling, too. Elderly patients who are not medically fragile have been moved into the larger of the center’s two floors, as the young residents are relegated to a smaller, less safe space, employees say. Staff and families fear the center will be shut down or be changed into an all-adult facility.
[…]Yet four current and former employees from the center told InvestigateWest that conditions inside the center have also worsened. The changes have medical staff raising alarms, including fears that remaining pediatric residents are being exposed to risk of infections and more acute medical crises.
[…]While state policymakers and families prefer that medically fragile children get care outside of a hospital setting, some parents say the existing supply of home and community-based nursing and therapists is not enough to replace what the Providence center has provided for decades. Families continue to struggle to find nurses who can fulfill their hours allotted through Medicaid.
“We don’t have any safety net,” said Calli Ross, mother of a medically fragile 9-year-old and an advocate for families. “Every family I know is struggling. There isn’t a single family that has full hours being given to them.”[…]
Editor’s note: I’m friends with the Straceners and Calli Ross. It’s a good story about misspent resources and a lack of family-centered systems — common themes in my news round up — so worthy of including here.
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