Where does the money go?
This month's cartoon follows the money. Well... tries to.
It’s amazing to me how popular disability services are — on both sides of the aisle. But it feels like a funny thing happens on the way to the beneficiary. Cartoonish Lenore Eklund and I discussed this phenomenon at a recent retreat and I love how she illustrated the concept!
On the second Sunday of every month, we feature Where is the Manual for This?!, an editorial cartoon about the medical mom life from Lenore Eklund.
Medical Motherhood’s news roundup
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From WYFF Channel 4: “SC families with disabled children ask Medicaid for financial help”
GREENVILLE, S.C. —Two years ago Wednesday, Peter came into the Duncan family's lives. The fifth and youngest child, Peter faces unique health challenges including Down syndrome, a feeding tube, underdeveloped intestines, and difficulty breathing normally.
"We would never trade a single hair or a single chromosome, because he's wonderful," his mom, Elizabeth Duncan said. "He's perfect."
Looking at their calendar, the Duncans counted at least four doctors' appointments a month for Peter.
"I ended up having to quit my job because I would be gone just," Elizabeth said until Peter yelled, "Hi, I love you!"
"I figured out this year just in the first three weeks of school I would have missed essentially a week," she continued.
And while Medicaid helps the family hire a caregiver, most are untrained.
[…]In other states, Medicaid pays parents to take care of medically complex kids when they don't have time to work. Here in South Carolina, Medicaid only pays parents after the child turns 18.
[…]A Medicaid spokesperson tells us they're currently working on a proposal to make these changes for families like the Duncans to stay afloat while keeping their children healthy and safe.
• From News Center Maine: “Maine schools have made strides to support students with autism, but parents say there's more to do”
Bangor Public Schools is one of the largest school districts in Maine, and there are several resources available for children who have autism or special needs. But even with more support in schools and classrooms, parents said they experience shared struggles they believe stretch far wider and dig much deeper than the district can cover.
[…]Despite being satisfied with how involved and attentive teachers have been over the years, [mother Julie] Lesche said she still feels like she has to jump through hoops sometimes when she wants to make her own suggestions after making her independent observations of her children.
According to Lesche, she has received continuous pushback when trying to change her son's school assignment for next year. She said he is zoned to attend Mary Snow School, but her son often runs off from her and other adults.
"Mary Snow sits right on Broadway, and there is this one little gate that leads out to Broadway Street that's not locked during the day," Lesche said. "My son has already twice — while we were there for other purposes — tried to bolt out the gate, and I was just lucky that I was able to catch him before he got out."
[…]Lesche said her request to change school zoning so her son can attend another school in the district hasn't been received well, and she said the pushback is just one example of why parents who have children with special needs or autism often feel dismissed, unheard, and pushed to the side when they take steps to speak up for their children in academic environments.
"People coming at me and second guessing everything I'm saying and acting like I don't know my child and what my child is capable of and acting like I'm an overreactive parent," Lesche said. […]
• From NYTimes Magazine: “Does Prenatal Testing for Down Syndrome Amount to Eugenics?”
[…]When you’re thinking about what may lie ahead for your offspring, it helps, I think, to maintain the proper perspective about what it is to live well, which is what Aristotle meant by ethics. Human life is not a competition in which everyone places somewhere in a ranking from one to eight billion. That’s because each person has different capacities, aims, relationships, projects and identities. These are all relevant to deciding what a good life is for them. Once children with Down syndrome are born, the task of families, medical professionals and teachers is to identify what these children need to develop their capabilities, which will be different for each one. The task, in other words, is to give them a chance at living their best lives. The same thing goes for all children, of course, whatever their endowments.
More generally, it’s important to distinguish between rational worries about your children’s future and anxieties that reflect prejudice against people with disabilities. It isn’t unreasonable to worry about having a child who can’t have a long and rewarding life. But that’s simply not true of most people with Down syndrome. Parents of children with Down syndrome have written at length, and often hearteningly, about their experiences. Before you decide to terminate a pregnancy on this score, make sure your decision is genuinely informed.
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