Advocates fight state on cost of parent caregiver program
Advocates fight state on cost of parent caregiver program
Watch our KATU piece on paid parent caregiving; plus read coast-to-coast articles on the need to expand care options. The conversation is changing!
This week, our local ABC affiliate did a wonderful piece on the work our group of parents is doing to expand Oregon’s paid parent caregiver program. I highly encourage you to watch or read the whole thing, as reporter Wright Gazaway really dug deep to get past the misinformation to the truth. I was also pleasantly surprised to see that the conversation in the comments around the internet has shifted away from the specious “why should we pay parents to take care of their own children” argument of yesteryear to frustration that government is not providing the promised funding. We’ve come a long way!
Check out the full story from KATU: “Parents of disabled children push back on Oregon's reason not to expand paid-parent care” Here are some snippets:
Parents of disabled children claim Oregon is failing their children – despite the state acknowledging these children need vital healthcare.
Families say the care goes largely unprovided due to a nationwide workforce shortage.
“The labor is being done, and the state is saving money on the fact that we can't find anybody else to do it,” Shasta Kearns Moore said.
Oregon assesses disabled children and determines the level of care they require above and beyond a neurotypical developing kid of the same age. In many cases, it's hundreds of hours per month. The state’s Medicaid waiver programs cover a range of care for qualified children.
Parents of these kids have a solution to the worker shortage: expand an existing program and pay them to cover those hours of care.
Calli Ross’s nine-year-old son, Tensy, is one of the main faces of the issue. Calli joked he should be required to register as a lobbyist due to the time he’s spent at the state capitol advocating for legislation to expand paid-parent care.
Tensy’s medical conditions require 24-7 care.
[…]KATU dug into rules from the Centers for Medicare and Medicaid Services and asked the federal agency for its interpretation of these parents’ concerns.
Specifically, KATU Investigates asked CMS if it considers it an obligation for states to provide care for the number of hours a state determines as medically necessary for a child.
"States are obligated to provide services that are assessed as necessary for the individual and are included in the approved person-centered service plans. Given workforce shortages, parents can play a critical role in ensuring service continuity,” a spokesperson responded, in part.
[…]These parents and the state remain at an impasse on the issue.
“I really don't understand what it is beyond bias when we're talking about hours that would otherwise be paid for, when we're talking about kids whose needs have already been assessed. The only thing that's missing is paying the people who are already doing the labor,” Shasta said.
[…]Both mothers said certain lawmakers understand their arguments. State Senator Deb Patterson is writing legislation to expand the paid-parent program for every child who qualifies under the CEN waiver. It’s unclear how far the legislation will go in the upcoming 2025 legislative session given the state’s current position on the cost of expansion.
The bill is called “Tensy’s Law”, named after Calli’s son.
“I do not think that in my son's lifetime, he will see paid-parent caregivers,” Calli said. “That is part of why having this bill named after him, hopefully it will be his legacy.”
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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 Bucks County Beacon: “Senator Bob Casey Meets with Bucks County Family to Discuss Legislation Helping Families with Children with Disabilities”
[…]Senator Bob Casey, who has been pushing for legislation such as the Long-Term Care Workforce Support Act and Home and Community Based Services Access Act, which will help provide more money to aids and also provide money and resources to family members taking care of disabled children and older parents, met with the Dunham’s to hear about Will’s day-to-day life, understand what challenges Chris and Maggie go through to find help, and explain what bills in the senate are currently at work to provide help to families.
[…]Recently, Chris was able to get a stipend through the consolidated waiver services, but receiving the funding was a struggle. The program has existed for three years, but both Maggie and Chris only learned about it nine months ago. Usually, this money is only dispensed to disabled individuals who are over 21 and live in a home or group home.
“Three years ago, they created a small section of qualification for consolidated waiver for medically complex children. So, under the age of 18, kids that were diagnosed as medically complex with an intellectual disability can tap into the consolidated waiver services earlier,” said Maggie. “And one of the services that is provided under this waiver is called a life share program. The Life Share program is what we have created here. We have created a Life Share home, and the caregiver of that disabled individual will get a stipend for caring for that individual. So now Chris is getting a stipend from this waiver program that’s paying him to care for our son.”
[…]While this program will be very helpful, it was very hard to find. “It was not advertised. I happened to find out about it through a supervisor through a supervisor through a supervisor because I’ve been asking for waiver service money for years.”
While there is a lot of work to be done at the state and local levels in terms of funding and marketing, Senator Casey is working on legislation to help everyone in this process. “The best bill is the one I’m leading, the Better Care Better Jobs Act, which focuses on both the care for the individual who needs it, as well as the job for those providing the care, the caregivers. We’ve got today in the country a caregiving crisis. There is no other way to describe it,” said Casey.[…]
• From The LA Times: “Growing need. Glaring gaps. Why mental health care can be a struggle for autistic youth”
In April, a group of Orange County parents flew to Sacramento to attend a conference hosted by Disability Voices United, an advocacy group for people with disabilities and their families.
They wanted to emphasize three issues to state officials at the event: the paucity of mental health care for children with developmental disabilities, the confusing mess of government systems meant to help them, and the gaps in availability of day-to-day caregiving.
[…]Despite the growing diagnosis of autism, which has been estimated to affect more than 2 million children and teens across the country, experts and advocates have bemoaned glaring gaps in services to meet the mental health needs of autistic youth.
Some researchers have estimated that upward of 90% of autistic youth have overlapping conditions like anxiety, depression or ADHD. Many have suffered alarming levels of trauma.
[…]The Supreme Court has ruled that institutionalizing people with disabilities who could live in the community is discriminatory if a community placement “can be reasonably accommodated.” Federal investigations have, at times, faulted states for failing to provide needed services for people to stay in their homes or communities.
[…]Judy Mark, president of the advocacy group Disability Voices United, argued it is counterproductive to try to stabilize a child away from his or her family. If at all possible, she said, California should be ensuring constant support in the home, which she argued would also be less costly than caring for a child in a STAR facility. […]
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