Oregon Advocates Push to End Parent Caregiver Ban
Plus: What the Education Department does for Special Education; New Jersey governor rallies Medicaid patients to send a message to DC; Ireland's major cities struggle to provide children's services
The following was testimony that I gave this week to the Oregon Joint Committee on Ways and Means. I was lucky to be chosen out of 150 people signed up to testify at the Warm Springs event during their traveling road show. The abbreviations I used during the speech to stay within the 2-minute time limit have been spelled out for clarity. Watch the video here:
Hello,
My name is Shasta Kearns Moore. I am here on behalf of hundreds of Oregon’s highest needs children, like my son, who are unable to access their Medicaid services.
Please fund and prioritize Senate Bill 538 — Tensy’s Law — and remove the ban on parent caregivers.
Oregon has made a promise to these children: That they will be able to receive care in their homes instead of more costly out-of-home placements. Yet, for more than a decade, families have struggled to utilize these promised services. Oregon Department of Human Services data shows that about 40 percent of children’s hours go unused —with some children unable to use any at all. These are children who struggle with the ordinary tasks of a typical day, who have multiple diagnoses and specialists and who — sadly, like several of our friends in the movement already — may not live to age 18 when the state will pay parents for caregiving.
Oregon has already obligated itself under federal Medicaid law, including Early and Periodic Screening, Diagnostic and Treatment (EPSDT), the constitutional right to health care and the state’s own K-Plan assurances to the Centers for Medicare and Medicaid. Many states, including Ohio, Delaware, and Tennessee, recognize paid family caregiver programs as budget-neutral because they fulfill an existing obligation. If another provider — any willing adult without a felony! — were available, the state would have to pay for ALL of these hours today.
The fiscal note also does not account for the cost savings that will result. Data from the temporary pandemic program and Oregon’s tiny Children’s Extraordinary Needs (CEN) waiver show that allowing parents to be paid caregivers reduces reliance on services. Submitted to written testimony are:
An Oregon Health Authority report confirming a significant drop in health care costs among children in the CEN program compared to those on the waitlist.
A case study illustrating how the government is now spending MORE on wrap-around services for an Oregon family that used to be paid for their care labor during the pandemic program.
And a survey report showing that this is what hundreds of eligible families say they would do, too — provide better care for their precious children — saving lives, time, money and heartache.
Thank 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 NPR: “How the Education Department helps students with disabilities get an education”
[…]the U.S. Education Department's role in helping students with disabilities may be changing soon.
President Trump has said his administration is going to move "special needs" to the U.S. Department of Health and Human Services (HHS), an agency that recently announced its own drastic cuts. His administration hasn't specified exactly which programs will be moved, and whether IDEA is among them, but the conservative policy playbook Project 2025 does propose moving IDEA to HHS.
[…]Experts tell NPR any such move would be incredibly complicated.
[…]But some conservatives wonder if the federal government has even been that helpful when it comes to special education.
"I mean, parents make their [education plans] with their local educators, right? With their school and their school district. They don't make it with Washington," says Jonathan Butcher, an education researcher at the Heritage Foundation, which helped shape Project 2025.
[…]The Office for Civil Rights, or OCR, is the Education Department's enforcement arm. When students face discrimination at school, they can file a complaint with OCR, which could lead to a federal investigation.
This office is responsible for discrimination complaints on the basis of race, sex, national origin and other categories, but OCR data shows disability discrimination has historically made up the largest share of complaints.
[…]Michael Gilberg, a special education attorney in New York and Connecticut who also has autism, says one of his disabled clients recently filed a complaint with OCR.
"With no Department of Education functioning in that area, that puts [their case] to a standstill," he says.
Gilberg notes that without OCR, "The only recourse a family would have would, in theory, be to sue the school district in either federal court or state court…and that takes a lot of time and a lot of money."[…]
• From NJ.com (New Jersey): “As Medicaid cuts loom, Murphy tells Kean: ‘This is the most important vote of your career’”
[…] Gov. Phil Murphy’s invited guests Friday at the Westfield Community Center to discuss the looming threat of New Jersey losing $5 billion to $10 billion in federal funding from Medicaid programs over the next decade. These cuts will decimate health, housing and social programs, Murphy said.
[…]“If you talk about it in terms the dollars, it’s very abstract. It feels like a math problem,“ the Democratic governor said. ”One of the objectives today is to make sure everyone here and beyond understands that, yes, this is a math problem, but it’s also a humanity problem. This is deeply, deeply personal to as many as 2 million New Jerseyans who will be impacted.”
[…U.S. Rep. Tom Kean Jr., R-7th Dist.] sits on the House Energy and Commerce Committee, which was directed by Congressional Republicans in February to find $880 billion of the $1.5 trillion in savings to help pay to sustain tax cuts from President Donald Trump’s first term. Kean is also one of three Republicans from New Jersey in the House, which holds a narrow 218-to- 214 margin over Democrats.
[…]“I support protecting Medicare, Medicaid and Social Security for their intended beneficiaries — not for scammers and bureaucrats abusing the system. New Jerseyans deserve better than political scare tactics," he said.
[…]Medicaid pays for the around-the clock care of 13-year-old Sakina Nasser, who lives at Children’s Specialized Hospital and relies on a tracheostomy, g-tube, and vagus nerve stimulator to keep her alive, her mother Shaaina Nasser explained.
“She is a child who wants to thrive, who wants to live,” Nasser said.
Peter Phillips of Far Hills presented photos of his two adult children with developmental disabilities, who live in community housing paid for by Medicaid. Beth, 46, is in a supervised work program and Peter, 51, attends a day program and they both need one-on-one support all of the time.
“I can’t not imagine how life would continue” without Medicaid assistance, said Phillips, a cancer survivor who is “pushing 80.” […]
• From the Irish Examiner (Ireland): “Children’s disability teams 'dangerously understaffed'“
Children’s disability teams are “dangerously understaffed” with figures showing the crisis is getting worse across Munster and Dublin.
In Cork, one children’s disability network team is operating with 10 fewer staff than it is funded for.
None of the seven teams across the city are staffed to their funded numbers.
[…]The Cork City data was provided to the Labour Party and shared with local councillor Ciara O’Connor.
“Families are being left in limbo, while staff within the children’s disability network teams face immense pressure to provide services with dangerously understaffed teams,” said Ms O’Connor.
[…]HSE head of disability services for the South West Angela O’Neill pointed to the “very competitive global market for healthcare talent” as a factor.
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