The Best Medical Motherhood of 2024
Plus: Mom gifted wheelchair van on Christmas; IDEA celebrates 50 years but something's always been missing; and how Chinese news shapes perceptions of people with I/DD
The interest in paid parent caregivers is strong — at least among my audience!
Although I try to present a variety of articles — from across the nation and around the world — relevant to the experience of raising disabled children, the most-appreciated articles this year focused on the pay family caregivers movement. And well, I can’t help but agree that this solution is the most relevant support that families like ours need.
The most-viewed issue this year — in terms of individual impressions — was the story that my son and I did on local TV news. My son tells legislators: “Just do it!”
The second-most-viewed issue also related to the paid parent caregiver issue. (The extra views are, I imagine, from readers sharing the issue.) This was an original piece on the Senate Health Care Committee hearing on the 2024 legislation I worked on with our Oregon-based team, Advocates for Disability Supports. (The bill died without being heard in the budget committee but we are working on another iteration for the 2025 session.) No one else covered what I considered to be an interesting and important hearing, so I did:
The most-viewed issue in terms of percentage of Medical Motherhood’s audience who opened it was this cartoon from Lenore Eklund with a bit of an angry headline:
So, also about the paid parent caregiver issue! I would love to hear what you think about it and whether you are working on policy in your state.
I think 2024 was another great year of growth and opportunity. But I do hope that 2025 will bring more common-sense policies for families raising disabled children.
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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 NPR: “A 1975 law helped kids with disabilities access education. Schools now need more help”
ARI SHAPIRO, HOST: For a long time, children with disabilities had pretty dismal prospects when it came to schooling. Many were simply forced to stay home. Next year marks the 50th anniversary of a landmark federal law that helped change that by guaranteeing all children with disabilities the right to a free public education. But today, the costs of special education have led to a crisis for many schools. NPR's Cory Turner has been digging into the archives and has this look back at how we got here.
[…] TURNER: The bill [that started special education] offered federal dollars to help pay for things like classroom instruction and speech and physical therapy. After a lot of debate, lawmakers agreed to send schools up to 40% of the extra costs of special education.
[…] TURNER: But through much of the 1980s and even into the 1990s, funding was below 10%. In fact, Congress has never gotten its annual appropriations to 40%. They haven't even gotten halfway, and that's with Republicans and Democrats in charge. To be fair, funding has risen nearly every year. And today, with nearly 8 million children receiving special education or interventions, funding to states sits at some $14 billion, which is a lot, but still just around 10% - not 40. And schools are saying what they were saying decades ago - that they need Congress to fully fund the law. Senate Democrats introduced a new bill last year to do just that, but it's gone nowhere. What would it take for things to change?
MARTIN: I don't know. I guess maybe we don't have the strong leader in the Congress who wants to do this.
TURNER: Ed Martin left government in the early 1980s to work as a disability rights advocate. He says, now, getting Congress to fully fund the law he helped write would likely take a lot of work outside Washington.
MARTIN: If the parents and the teachers and others organize themselves into a political force - meaning saying, we've got to have more money; we've got to do a better job - I think they'll make some headway.
TURNER: In other words, precisely the kind of civil rights movement that sparked action 50 years ago.
• From ABC News 4 (South Carolina): “Mom with disabled child surprised with minivan on Christmas morning”
Awendaw barbeque restaurant owner Elliot Middleton is making impact in the Lowcountry this Christmas, by gifting cars he has fixed up to community members in need.
One North Charleston family's Christmas morning was changed forever when Middleton surprised a mom of a daughter with disabilities with a car.
[…]“It means a whole lot," said [medical mama Keira] Gentile. "Sometimes now we can get up and go and don't have to wait on nobody. That was my biggest things, waiting on a ride or trying to find a ride and now we don't have to do that. So I’m very appreciative” she said.
[…]The family lives in a top floor apartment, with no elevator, making each day cumbersome with Khymani’s wheelchair in addition to relying on public transportation.
“All of them are important, but this one touched me because of the fact of the situation of the stairs” Middleton told News 4. “Understanding that the physical endurance someone would have to deal with bringing a kid in a wheelchair down the stairs, and then having to hike maybe 500 yards to maybe even a mile to get to a bus stop” he explained. […]
• From Nature (U.S. science magazine): “The identity of ‘others’: media reproduction of youth and young adults with intellectual disabilities in mainland China”
The mass media has become the main source of public understanding of persons with intellectual disabilities in China. This research explores what images are constructed for persons with intellectual disabilities through media reproduction. […] Their images in television news is mainly composed of four types: deviant identity, burdensome identity, dehumanized identity, and motivational identity. Negative images of youth and young adults with intellectual disabilities dominate television news. It is crucial to standardize reporting language and promote positive imagery to reduce the stigmatization of individuals with intellectual disabilities in China. Various factors, including traditional Chinese culture, developmentalist discourse, and the concept of disability perception influence the image of persons with intellectual disabilities conveyed by the media.
[…]Persons with intellectual disability (ID) in China is defined as having an IQ below 70 and significant adaptive deficits in cognitive cognition, social interaction, and life skills (CDPF, 2006). The number of registered persons with ID has reached 3,427,599 in China by the end of 2021 (CDPF, 2020). In fact, due to objective constraints and subjective reluctance in the process of applying for disability certificates, the majority of persons with ID do not have disability certificates, so the actual number is much higher than that (Chen and Yu, 2024). However, such a large group has not received sufficient attention from social policy and academia. […]
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