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The debate over disability disclosure, Maine to pass parent-caregiver pay, and NJ kids may lose access to a major hospital
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The debate over disability disclosure, Maine to pass parent-caregiver pay, and NJ kids may lose access to a major hospital

News round-up for the week of June 18

One recent trip to the mailbox for medical mama Jenny Hoyt revealed a stack of explanation of benefit letters from her daughter’s insurer.

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 see about the #medicalmom life?

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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 Washington Post: “Your child is neurodivergent. Should you tell everyone?

“I never would’ve wanted to be the kid who everyone knew is dyslexic or had ADHD. For our son, we are getting all the outside support we can, but socially we’ve been quiet about it,” said [dad Pavel] Tabutov, who is also neurodiverse. “We would never lead with, ‘Our son has disabilities!’”

After hearing from his friend, Tabutov phoned the hostess [of a recent party his son attended] with an apology. He never mentioned his son’s severe ADHD, yet the incident has caused him to think hard about his position. Neurodiversity has taken on a new value and acceptance — last year, for example, LinkedIn started to offer “dyslexic thinking” as a skill users could add to their profiles.

But talking about it openly can also be problematic, particularly because children need agency over their own lives. And so parents are caught in a particular dilemma: Do they disclose their child’s diagnosis with the hope of educating and enlightening other people; do they wait for their children to decide what to disclose and when; do they keep quiet and continue to navigate sometimes difficult situations?

[…]“In my research, I’ve found that people with neurodivergence are successful when they carefully pick and choose. They decide who it’s safe to tell and who it isn’t,” said Alecia M. Santuzzi, a professor of psychology at Northern Illinois University who studies disabilities in the workplace. It’s called “reputation management” and Santuzzi acknowledges that “you can end up spending energy deciding who to tell, who not to tell and sometimes worrying about it.”

Despite this, experts say the reputation management model can be a healthy option for parents of neurodiverse kids. You want to ensure your child is proud of who they are and embraces their neurodiversity. But you also want to leave room for your child at some point to take over and decide for themselves whom they tell, [special education researcher Joy] Banks says.

[…]Banks says that if we look at the history of disability rights, especially the Individuals with Disability in Education Act (IDEA), it was signed into law only because parents began to protest. “There is still a need for social progress in the area of disability. There’s still a need for equal access and equitable access to resources and services. Parent advocacy can be powerful.”

As for Tabutov, he’s had a change of heart. “I’ve been thinking it over a lot. I don’t want other parents and kids to feel alone in this. My goal is to talk more about our struggles with disability. Not as an excuse, but for the sake of spreading awareness,” he says. “I also want people to recognize all the amazing abilities our son has. He’s smart, he’s capable, and he’s extremely creative. I think people will only be more tolerant and accepting if we’re open and honest.”

• From NEWS CENTER Maine: “Bill would pay Maine parents to care for their medically fragile kids

The workforce crisis in Maine is taking a toll on families of children with the highest medical needs, who often step in to provide around-the-clock care themselves. 

LD 346, which is awaiting a vote in both the Maine House and Senate, would pay parents to be their kids' caregivers. 

Two bills sponsored by Rep. Jessica Fay, D-Raymond, and Sen. Joseph Baldacci, D-Bangor, considered by lawmakers this session, proposed extending MaineCare coverage to parent caregivers of sick children. Fay's bill, LD 346, was voted unanimously out of the Legislature's health and human services committee

[…] With most of her son's care solely on her shoulders, Andrea, a social worker, is unable to work. Under Maine Care rules, the state's version of Medicaid, she also can't get paid to be James' caregiver, but that could change under a proposed bill. 

"That would be such a huge relief if that compensation would be coming in," Andrea said.

The bill would extend MaineCare coverage to parent caregivers under Section 40, which covers home health services. 

Nancy Cronin is the executive director of the Maine Developmental Disabilities Council.

Parents would have to apply to work through a home health care agency because you need a fiscal intermediary, which is a good thing, Cronin explained. Unlike children with behavioral health care needs, Cronin said there is currently no centralized referral system within Maine's Department of Health and Human Services where case managers can work with families of medically fragile kids, which could number more than 100 across the state, to find professional medical help.  

[…]"It's going to be less of a burden for the taxpayers, and the home health industry will be getting more very skilled workers, so it feels like a win-win for everyone with children coming out on top," Andrea explained. […]

• From NJ Spotlight News: “Hospital system to leave NJ Medicaid network, could send special-needs kids scrambling for care

South Jersey families with children who need highly specialized health care are worried about what will happen after a Delaware-based children’s hospital system with a growing presence here leaves New Jersey’s Medicaid network, a withdrawal that begins Aug. 1.

Nemours Children’s Health alerted New Jersey patients and doctors in late April that it will no longer accept new cases under the state’s Medicaid managed-care plans, which insure almost 97% of the 2.3 million residents in the state- and federally funded program, after that date. Nemours has roughly 11,000 New Jersey patients in managed care and will phase them out of their medical treatments through the end of November, according to hospital officials.

[…]“There are already people talking and feeling the desperation of, ‘I’m not going to be able to get the care my child needs in these already fractured systems,’” said Susan Coll-Guedes, a Galloway resident who has navigated the Medicaid system for years on behalf of her disabled son Alex, now 22. Options for this level of care are limited in New Jersey, she said, and the struggle to find appropriate care often involves travel to Philadelphia, Delaware or New York. Losing Nemours “really limits the lives of these children,” she said.

[…]On Sunday, Sarah Kalis launched a Change.org petition begging Nemours to reconsider its decision to cut care, which had gathered nearly 500 signatures by Wednesday evening. Kalis noted Nemours was founded with funding from Delaware industrialist Alfred I. du Pont, to care for crippled children, and said this decision goes against that mission. “New Jersey children will suffer. While Nemours has said they are committed to their continuation of care to New Jersey’s children, their actions are leaving established New Jersey patients out to dry without an appropriate solution,” she wrote in the petition.

[…]While Nemours said it is still open to discussion, [Pauline] Corso, [senior vice president and chief operating officer for Nemours facilities in the Delaware Valley] warned that families with special-needs children covered by Medicaid could face a challenging road ahead. Patients may need to “bypass our sites and may have to travel much, much further to receive the care and that care will probably be months away,” given delays caused by a growing shortage of physicians, especially those who accept Medicaid, which typically pays less than commercial insurance plans. “Some of these families, their children are seeing 12 to 13 specialists that are all coordinated within one health system, on one electronic medical record. Now they may have to go out and find 13 separate specialists.”

While discussions continue around Nemours’ place in New Jersey Medicaid, hospital leaders are backing legislation Corso said would serve as a starting point for a more holistic fix, and she urged parents to contact lawmakers to support the measure. A bill introduced in recent weeks would set rates for out-of-state children’s specialty hospitals at 125% of the Medicaid rate in their “home” state, which is generally higher than the payment structure in New Jersey. […]


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