Nonprofit aims to improve delivery of Down syndrome diagnosis
Nonprofit aims to improve delivery of Down syndrome diagnosis
Plus: Ohio inches closer to a better paid family caregiver program, and an investigation reveals several Idaho districts not following special education law
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Local 12 News (Ohio): “Bill named after local woman with slit-throat could help thousands of others”
A local developmentally disabled woman who had her throat slit, now has a bill named after her which could help thousands of families throughout Ohio.
Reporter David Winter has kept alive the harrowing story of Lauren Carter, a 36-year-old woman at the center of a lawsuit that claims unthinkable abuse and neglect. It appears help is on the way.
We've followed the Carters since January of last year, after they filed a lawsuit claiming the facilities in which Lauren lived subjected her to the unthinkable, including that inexplicable slit throat.
“Lauren has a 30-year history of neglect and documented abuse,” said Lauren’s dad, Greg Carter.
He said he tried to have cameras installed in facilities, but they rejected his requests. He tried to care for his daughter at home, but county-administered Medicaid Waiver funds compensate families at a lower rate than they do facilities, so he can’t afford to care for her at home. We brought Lauren's story to advocates, administrators, and legislators and finally one heard the Carter's cry for help. State Representative Sara Carruthers from Hamilton just introduced HB 465, “Lauren's Law.” It forces facilities to allow cameras in resident's rooms, and it provides payments from the Medicaid Waiver Program to families caring for loved ones at nearly the same rate it pays facilities.
[…]The bill was just introduced [March 27]. Representative Caruthers said she expects it will go to committee [this] week.
• From Idaho EdNews: “STATE INVESTIGATION: Special education violations come to light as parents advocate for students with disabilities”
Across Idaho, parents of students with disabilities are frustrated.
They’ve repeatedly reported feeling unheard or misled in discussions with school leaders about their children’s needs.
Last year, dozens of them filed formal complaints with the Idaho Department of Education — a seeming last resort to advocate for their children. In many cases, districts took no action to remedy issues until the state investigated.
Under a federal special education law, parents must be given the opportunity to participate meaningfully in meetings and conversations where decisions are being made about their children’s education. And school officials should consider that input along with other sources of information, such as assessment data, evaluations, and teacher observations.
But in districts and charters across Idaho, that’s not always happening.
In 2023, the state completed investigations stemming from 37 grievances, mostly filed by parents or “complainants” about allegedly inadequate special education services; in 35 of those cases, investigators found that districts or charters were violating federal law. All told, 25 different districts and charters were not completely fulfilling their obligations toward all children with disabilities.
[…}Even when students are correctly identified as having a disability, dozens are not getting the services they need, according to state investigation reports from 2023 that EdNews obtained via public records request. More than 400 pages of documents shed light on how schools have foundered their federal responsibility to appropriately educate students with disabilities, a failure pockmarked with a frequent disregard for parents’ concerns, requests, and opinions. […]
• From the Star Tribune/TNS via Disability Scoop: “Program Helps Parents Celebrate Their Babies With Down Syndrome”
MINNEAPOLIS — In March 2013, while Carissa Carroll was in a hospital room recovering from an emergency Caesarean section, her husband, Chris, sat in the waiting room until he was allowed to go in. A nurse practitioner approached Chris and asked whether he was aware of a condition called trisomy 21.
Trisomy 21 is another name for Down syndrome. The Carrolls’ newborn was showing physical signs of having it, the nurse practitioner told Chris.
“Well, just enjoy your baby,” she added, and walked away.
The Carrolls were left with the “shock, confusion and fear” of absorbing that unexpected news, lacking advice on what to do about it, and stunned by the “abrupt and insensitive” way it was delivered.
“What I would have liked to have heard is, ‘Congratulations on your baby boy. We have some news that may be unexpected,'” said Carissa Carroll, 43.
[…]The Carrolls sympathized with other parents receiving that same news in a blunt or even negative way. So when Jack turned 1 year old, they took action. They heard about a family in a local hospital who’d just had a baby with Down syndrome. They visited the family, bringing a basket of gifts and resources for supporting children with Down syndrome.
[…]The Carrolls kept it up, getting names of new families and presenting them with gift baskets, attending medical conferences to connect with doctors. They became a nonprofit with many volunteers. In the past decade, Jack’s Basket, headquartered in Arden Hills, has acquired a staff of six and delivered baskets to families with new Down syndrome babies in all 50 states and 46 countries.
[…]Meanwhile, the nonprofit has presented a new curriculum for health care providers called Communicating Unexpected News.
The program teaches how to sensitively deliver news of a baby with Down syndrome (or other unexpected, but not necessarily negative news) “and being able to discuss that piece with all the joy and happiness that a child can bring to a family,” said Dr. Erin Plummer, a neonatologist at Children’s Minnesota in St. Paul who developed the curriculum.
[…]Doctors receive little training in medical school on how to deliver such news, Plummer said. Before she learned about Jack’s Basket, “even though I was trying to do my very best and I thought I was doing a good job in delivering a diagnosis, I was not,” she said. “I just didn’t know what I didn’t know.”[…]
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