Discover more from Medical Motherhood
Discrimination in medicine, Oregon legislators speak on paid parent caregivers, family adopts 6 disabled kids
News round-up for the week of July 2
Each week, we showcase a picture of real life from the Medical Motherhood community. If you’d like to participate, simply reply to this email. The intent is to show YOUR experience as a medical parent, not your child. What do you want people to know about the #medicalmom life?
*The podcast version will be back next week. Happy Fourth of July!
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Open Access Government: “Study finds children with disabilities commonly face medical discrimination”
[…]For children with disabilities who frequent hospitals and clinics, a new study by the University of Utah Health found that professional attitudes toward these children have commonly been negligent and dehumanizing – potentially leading to substandard medical treatment.
One mother who was interviewed about her child’s experiences in health care said: “They mistreated her and treated her like a robot. Every single time a nurse walked in the room, they treated her like she was not even there.”
[…]The [study’s] interviews revealed that family caregivers felt that discrimination resulted in:
Limited accommodations, for example, for wheelchairs, make it difficult for children and their families to access healthcare
Clinicians not providing the same health care and medical treatments to children with disabilities as they would for those without disabilities
Clinicians dehumanizing children with disabilities, treating them differently than they would typically
[…]The study’s senior author, Nancy Murphy, M.D, [said]: “I believe that all health care providers choose this line of work because of the common goal of helping those in need.
“Yet when providers lack the knowledge, experience or resources to render care, we tend to shy away from situations. This tends to happen without our awareness, and this research brings this issue into clear view.”
The researchers noted that “recognizing the problem is the first step”, and said they will be carrying out additional studies to determine how common these attitudes are nationally, as well as how much of an impact on the health of children with complex medical needs.
• From Oregon Capital Chronicle: “Oregon Senate passes bill to help parents who are caregivers of disabled children”
[…]The bill would put about $3 million toward the program, and the state will need approval from the federal Centers for Medicare & Medicaid Services. Federal matching funds would add an estimated $7 million.
The state and federal money would be enough to cover about 200 families, according to a legislative analysis. But that figure could change based on how much each qualifying family uses the program.
Parents would be paid similar rates to professional caregivers, usually around $20 to $22 an hour.
Lawmakers and parents described the bill as a starting point – and acknowledged needs are higher than what the money covers.
“We may need to come back and allocate more money in the future to serve more individuals,” said Sen. Sara Gelser Blouin, D-Corvallis. “We just need to figure out how this works so we are meeting the need.”
Gelser Blouin, who crafted the proposal and introduced it on the Senate floor, thanked advocates and families for working with her on the bill.
Minority Leader Tim Knopp, R-Bend, praised the bill and said he wishes the state could put more money toward the need. Knopp had brought forward a bill that would have opened up the program to about 10,000 children with disabilities without limiting it to those with the highest needs. That bill died amid concerns about its cost.
“I can only imagine the stress that would be involved, especially if you don’t have the resources, to wonder where that next meal, that next rent check, that next house payment’s coming from,” Knopp said.[…]
With the pandemic over, it’s challenging if not impossible for families to find caregivers to hire for their children. As a result, the situation is worse now for parents than they were during the pandemic, when they had access to federal benefits, said Shasta Kearns Moore, a member of Advocates for Disability Supports. The organization advocates for parents and disabled children in Oregon.
“This is the support our children need to survive and thrive in their communities,” Kearns Moore said. […]
[…]Anthony, Devlin, Tracee, 27, Joey, 22, and Julian 20, all have Down syndrome. Cameron, 22, is blind and developmentally delayed. He also has dwarfism.
Joey was adopted at age 10, while the rest of the children were adopted in their teens. […]
"The foster care system is broken — especially for kids with special needs. They get placed anywhere, with people who aren't qualified," [mom] Shannon [Pinkerton] says. "That's one of the reasons we're doing this."
[…]Shannon is proud of how far Anthony, Tracee, Joey, Julian, Devlin and Cameron have come over the last few years. When Joey moved in with the Pinkertons at age 10, he was still in diapers.
“I had him toilet trained in two days,” Shannon says.
Cameron, who had trauma from past foster placements, struggled with behavioral issues. Shannon recalls how he did $300 worth of damage his first week in their home.
“He was always like, ‘You’re gonna kick me out aren’t you? And I’d tell him, ‘No, no, no. This is your forever home,’” she says. “One day, he finally believed me.”
Shannon says her family is just like another other family.
“Do the brothers fight sometimes? Yes. Will you find dishes in my sink? Probably,” she says. “Do we love each other? You bet.”
Medical Motherhood brings you quality news and information each Sunday for raising disabled and neurodivergent children. Get it delivered to your inbox each week or give a gift subscription. Subscriptions are free, with optional tiers of support. Thank you to our paid subscribers!
Follow Medical Motherhood on Facebook, Twitter, TikTok, Instagram or Pinterest. The podcast is also available in your feeds on Spotify and Apple Podcasts. Visit the Medical Motherhood merchandise store.