Roughly 90 percent of eligible Oregon children on a waitlist for paid parent caregiver program
Plus: After a mom's cancer diagnosis, North Carolina county sued for treatment of her disabled children; and Maine is in 'crisis' with not enough residential beds
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From NC Newsline (North Carolina): “A family sues Moore County for institutionalizing children after their mother’s cancer diagnosis”
A Moore County woman and her two disabled children are suing Moore County claiming that the county improperly retained custody of the children after her cancer treatment and violated the children’s rights by failing to arrange for proper care.
The federal lawsuit Disability Rights North Carolina filed last week says Moore County dropped Rumina Slazas’s daughter at the pediatric emergency department at UNC and left her there, refusing requests from the hospital to pick her up. Slazas’s daughter is referred to in the lawsuit as S.S. and is now 15.
In all, Slazas’s daughter, who has intellectual and developmental disabilities, spent nearly nine months at UNC Health before Moore County transferred her to a psychiatric residential treatment facility in South Carolina. S.S. spent about four months there before she was allowed to return home to her mother. Moore County rejected options that would have allowed S.S. to live in a group home or with a former special education teacher. Moore County sent S.S. to the psychiatric residential facility even after being told she did not have a diagnosed mental illness, the lawsuit said.
Slazas’s son J.S., now 16, lived for a while in the county’s social services office before being transferred to an intermediate care facility. J.S. has intellectual and physical disabilities that limit his ability to walk, balance and care for himself, the lawsuit says.
Both of the teenagers regressed because they did not receive needed care while in the institutions, the lawsuit says. The lawsuit asks the court to award the family damages and find that the county violated their rights under the Americans with Disabilities Act.
“MCDSS (Moore County Department of Social Services) does not know how to care for children with autism,” Slazas said in a press release. “Instead of seeking out and listening to advice from disability professionals about how to provide my children a loving, family-like home, they institutionalized both of them. Both of my children returned home traumatized and far worse off than when they were removed from my home.”
The Moore County attorney and the county’s social services director did not respond to emailed questions about the lawsuit, why the county retained custody of the teens, or how it decided where they would live. […]
• From KATU News 2 (Oregon): “Parents of severely disabled children beg Oregon to expand paid parent care program”
Parents of severely disabled children say they are desperate for state leaders to expand a new program that pays parents to provide certain care to their children.
A KATU investigation found other states have done just that.
Some Oregon parents have disabled children who qualify for hundreds of hours, per month, of state-funded, in-home care,but they told KATU it’s hard to find professionals to provide that care due to workforce shortages.
The federal government started allowing parents to get paid during the pandemic, in part to address that shortage.
Jordyn Skaats 7-year-old son, Thorin, was born at 25 weeks. Despite the health complications that came from that, Jordyn said Thorin is like a normal kid in so many ways.
[…]Jordyn said it’s been years since she could find a provider to cover most, if any, of the hundreds of hours of care Thorin qualifies for based off his state assessment. She can’t work due to his healthcare needs.
The permanent program – called the Children’s Extraordinary Needs program – allows parents to be paid up to 20 hours per week and is only offered to children with the highest needs as determined by a state assessment.
The state said 1,557 children met those criteria. However, the state’s budget only pays 155 families at one time, while the rest – roughly 90% – are on a waitlist.
Thorin is number 1,249 on the waitlist.
“What did you think when you read that [letter],” KATU asked Jordyn.
“I was really sad. I'm sorry. I felt like I lost hope,” Jordyn said through tears.
[…]The state agency in charge of the program told KATU that 209 of the 1,557 children currently live in community-based 24-hour residential homes and foster homes, roughly 13% of the eligible children. Advocates for paying parents say it’s cheaper to pay parents. They want the state to expand the program and pay every family that qualifies.
[…]Advocates for these parents say the state is obligated to pay for the child’s care and should pay for it -- either to a parent or a care provider.
In other words, if a child is eligible to receive 300 hours of in-home care per month based on the state’s assessment, but a family or agency can’t find a provider to cover those hours, advocates argue the state should pay the parent for at least 20 hours of the care per week if it's under the child's allocated hours, regardless of the state’s budget for this program.If the parent could find an outside provider for the work, Medicaid would cover it.
[…]State Senator Deb Patterson is working on legislation to pay every qualified parent who opts in. Jordyn said getting more parents in the program would save taxpayers money in the long run.
“I could get off food stamps and be able to get off certain assistances if I had the help, and also, hospitalizations would be lower, because when there were nurses or caregivers with my son, they didn't know him as well as I do or triggers, and it led to more hospitalizations which costed more money as well,” Jordyn said. […]
• From News Center Maine: “'It's a real crisis': Treatment programs for kids with disabilities are disappearing”
There are now only two residential treatment programs for kids with intellectual and developmental disabilities covered by MaineCare left in the state, leaving few options for many kids who are struggling and their families.
[…]According to behavioral health professions, more than 100 kids in Maine are waiting to be placed in residential treatment programs, but they don’t have anywhere to go.
There are about 224 residential beds in Maine and 121 kids currently placed. But most facilities don’t have the staff or resources to take on any more kids.
“We wish that we could take them all in to provide them the support,” Rachel Bousquet, executive director of KidsPeace in Ellsworth, said.
But staffing shortages and rising costs make it impossible.
[…]Kelly Barton, president of Maine Behavioral Healthcare, said “it's a real crisis in the state, and it's impacting our kids and their families.”
Barton said there are more and more gaps in services for kids with developmental disabilities, especially as their needs become more acute, leading many to out-of-state care or being treated in hospital emergency rooms or inpatient programs.[…]
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Sad to say, I am currently in the caregiver shortage situation. My daughter qualifies for 24/7 care. Currently, I have no day nurses for 6 of the 7 day shifts and one of those shifts, the nurse calls of A LOT. I do have coverage for 6 of the 7 night shifts. I practically homebound because of my own chronic health issues and because of all of the energy it takes to get my daughter out of the house. We are both missing doctor's appointments because of the lack of nursing help. She isn't attending school because I don't trust the school nurses after an incident a few years ago, so if a private nurse is unavailable to attend with my daughter, she does not go to school. I am frustrated and saddened by all of this too. If I get sick, the same thing will happen to my daughter. She will have to go to the hospital and only God knows what will happen to her then. I'm struggling to remain hopeful.