Behavioral health funding gets a boost; Moon launch includes rare disease kid's story; Spotlight on years-long Medicaid waitlists
News round up for the week of March 3
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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 the Associated Press via PBS News Hour: “States offer services for disabled kids, then make their families wait 10 years for them”
When Lilly Miller was in elementary school, teachers told her parents they needed to immediately sign up their youngest daughter, who has Down syndrome, for a wait list so the state would pay for a day program when she grew up. The teachers predicted a six-year wait.
The Millers have been waiting 10 years. Lilly is now 21 and has aged out of special education programs in the public schools in their hometown of Wichita, Kansas. Her parents, also teachers, have hired a home caregiver. A day program, where she would learn new job skills or flex existing ones while socializing, would cost between $1,500 and $2,000 a month, Marvin Miller said.
Across the U.S., hundreds of thousands of children, adolescents and young adults with physical or intellectual disabilities are waiting for state-covered services. In Kansas, legislative committees planned Wednesday to consider proposals for higher funding. But even with more funds, it could take years to eliminate the state’s waiting lists.
[…]Parents across the U.S. have been stalled getting services for toddlers who are delayed developmentally. But many parents of children with intellectual or physical disabilities also must think years into the future.
At least 692,000 people with physical or intellectual disabilities are waiting for services in at least 40 states, according to a November 2023 survey by KFF, a health policy research group. Federal law doesn’t require states to provide home and community based services, and what they cover varies.
Kansas expects to spend $776 million under its current budget on such services for the disabled. That funding would have to jump by roughly 54 percent to about $1.2 billion annually to eliminate waiting lists.
[…]The funding issues in Kansas aren’t likely to be resolved for at least another month. Parents like Miller, Padding and the Elskamps are juggling their advocacy with their jobs and caring for their children.
[…]Marvin Miller considers his family fortunate, although he and his wife haven’t been able to save for retirement and he drives a 1999 truck.[…]
• From the U.S. Department of Health and Human Services (press release): “Biden-Harris Administration Announces New Funding to Increase Capacity for Behavioral Health Services”
Today, [Feb. 26,] the U.S. Department of Health and Human Services (HHS), through the Substance Abuse and Mental Health Services Administration (SAMHSA), announced $36.9 million in notices of funding opportunities for grant programs supporting behavioral health services across the country. Additionally, HHS, through the Centers for Medicare & Medicaid Services (CMS), issued guidance that allows states to expand the pool of behavioral health care providers eligible for enhanced federal Medicaid funding, which will better support this critical workforce as well as improve access to care. The guidance also allows states to claim federal dollars for nurse advice lines.
[…]The grant funding opportunities [include…:]
• $10 million for Screening, Brief Intervention, and Referral to Treatment (SBIRT). This program implements the SBIRT public health model for children, adolescents, and/or adults in primary care and community health settings – such as health centers, hospital systems, health maintenance organizations, preferred-provider organizations health plans, Federally Qualified Health Centers, behavioral health centers, pediatric health care providers and children’s hospitals – and schools with a focus on screening for underage drinking, opioid use, and other substance use.
• $5 million for Community Programs for Outreach and Intervention with Youth and Young Adults at Clinical High Risk for Psychosis. This program provides trauma-informed, interventions to youth and young adults, up to 25 years of age, who are at clinical high risk for psychosis.
• […]$1.1 million for the Statewide Family Network Program. This program provides resources to enhance the capacity of statewide mental health family-controlled organizations to engage with family members/primary caregivers who are raising children, youth, and young adults with serious emotional disturbance.
• From The Oregonian/OregonLive: “Moon landing cargo includes Beaverton boy’s story of living with ultra-rare disease”
[…]The lunar lander that touched down on Thursday carried a celestial time capsule that contains hundreds of stories, including that of Beaverton’s Raiden Pham, who will celebrate his fourth birthday on Feb. 26. Raiden has UBA5, an ultra-rare genetic disease that presents as quadriplegic cerebral palsy.
[…]In 2021, Raiden’s parents, Tommy and Linda Pham, founded a nonprofit that has raised $1 million for UBA5 research. They hope the lunar landing supercharges fundraising and pushes the total to $4 million, which would mostly fund the latest gene replacement therapy research at the UMass Chan Translational Institute for Molecular Therapeutics.
“If you think about doing the impossible, or making the impossible possible, you think about going to the moon,” Tommy Pham said. “Our rare disease journey is also about doing the impossible.”
The message on the moon isn’t costing the Phams, or the Raiden Science Foundation, a dime. Space Blue let them hitch a ride for free.
As part of its Lunaprise Mission, Space Blue is leaving the time capsule, an etched disc, on the moon. It includes the work of more than 200 artists and is meant to showcase human achievement.
[…]Pham works for Nike. He previously worked for Oregon Health & Science University in technology transfer, helping bring OHSU innovations to the marketplace. Pham cofounded Nzumbe, a genetic drug screening platform, and the Children’s Cancer Therapy Development Institute.
[…]The Phams also founded the nonprofit Raiden Science Foundation which has raised more than $1 million and funded UBA5 research at OHSU, Baylor College of Medicine, St. Jude Children’s Research Hospital and UMass Chan Medical School.
[…]UMass is the focal point of the research, Pham said. It’s working on gene therapy for UBA5. It will take $4 million to fully fund the research, hence the fundraising goal. If successful, the research would benefit Raiden, but also other UBA5 patients and open the door to scaling it out to other diseases.
“We have shown proof of concept,” Pham said. “Now we’re on the efficacy and toxicology steps.
If all goes well, clinical trials could start in late 2025.
[…]“The more we can get our story out there, especially about being the first on the moon, I think it will inspire a lot of families to fight and to not give up.”
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