Social Media is Not Reality... Perhaps Even More So for Medical Mamas
Plus: Nebraska expands Medicaid services; Wisconsin highlights need for mental health services for disabled children; and a 13-year-old with CP in Maine has been stuck in the emergency room for months
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.
We all know that social media is the highlight reel but when you are a medical mama, there are big sections of your life you just can’t post about. Even if bodily fluids take up most of our lives, you won’t find them on our IG grids!
Speaking of real life as a medical mama, the folks over at the literary magazine MER — Mom Egg Review — is inviting submissions for its folio on medical motherhood. Sarah Dalton, the folio’s editor, reached out to say the special section was inspired by our newsletter and the work of several other mamas to shine a light on the work we do.
Click on the Google form in this announcement page to submit; the submission period ends Aug 5.
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 Nebraska Department of Health and Human Services (press release): “Nebraska Expands Medicaid Coverage For Children With Developmental Disabilities”
The Nebraska Department of Health and Human Services (DHHS) Division of Developmental Disabilities (DDD) and Division of Medicaid and Long-Term Care (MLTC) are pleased to announce the expansion of the Katie Beckett Program to provide greater access to essential Medicaid services for children who live with their families and meet the Intermediate Care Facility (ICF) level of care (LOC) or Nursing Facility Level of Care (NF LOC) for Individuals with Intellectual Disabilities (IID).
[…]This will allow children with ICF/IID and NF LOC under age 19 who live with their families to qualify for Medicaid eligibility without the parents' income or resources being considered. Previously, the child receiving Medicaid services through the Katie Beckett Program had to meet the hospital level of care. This expansion allows families to be able to access Medicaid services, without requiring participation in a Home and Community-Based Services (HCBS) Waiver.
“The expansion of Medicaid to families is a positive step forward in Governor Pillen's plan to eliminate the Developmental Disabilities Waitlist," said Tony Green, Director of the DDD. “This expansion will provide greater access to critical Medicaid services for individuals with disabilities."
The Katie Beckett Program provides Medicaid coverage to a child with ICF/IID or NF LOC and only considers the child's income and resources to determine eligibility, not the resources or income of the child's parents. The purpose of the program is to offer services to children who live at home with their parents and are eligible for Medicaid based on their high level of need. Medicaid services available through the Katie Beckett Program include but are not limited to, nursing care in the home, hospital stays, medicine, medical supplies, equipment, and physician fees. Private health insurance through a parent does not disqualify a child from receiving Medicaid services. […]
• From the Portland Press Herald/TNS via Disability Scoop: “13-Year-Old With Cerebral Palsy Stuck In The ER Since Christmas”
SKOWHEGAN, Maine — Abby Bedard sat in her wheelchair in her tiny, sparse room in the emergency department at Redington-Fairview General Hospital. Her bed is a twin mattress on the floor. A chart on a marker board details the hospital’s plan for her each day.
The 13-year-old doesn’t want to be here. Her parents don’t want her here, either. Neither do hospital officials. Or the Maine Department of Health and Human Services.
Nevertheless, Abby has been living at the hospital’s ER for more than 220 days, spending Christmas, Easter, Memorial Day, the Fourth of July and every day in between on the hospital’s grounds.
[…]But Dr. John Comis, Redington-Fairview’s emergency department medical director, said ER services at hospitals are not designed to care for psychiatric patients.
“We are set up for if you have a heart attack, go to the ER. If you have a broken pelvis, we can fix your hip,” Comis said. “It is not the ideal place for a patient like Abby. You could have people screaming in the next room or going through drug withdrawal symptoms. It’s a real stretch for an ER to provide 24/7 psychiatric care.”
Comis said a decade ago, it was uncommon to have psychiatric patients languishing in emergency departments for months, waiting for services. Now, it’s a common sight, and while hospitals have adapted to the changes, such patients are better served by receiving care at facilities designed for them to live and get mental health treatment.
[Abby’s mom] Sue Bedard said they’ve tried everything to secure Abby a placement, but there are long waiting lists for some, and other group homes can’t take her in because she has both physical and mental health needs. Trying to help her — and so far being unable to — feels hopeless and frustrating.
“We are totally drained in every way,” Sue Bedard said. “When we wake up in the morning, the first thing we think is, ‘Oh, my God, my daughter is still in the hospital.’ Every night, we cry and pray knowing that our daughter is still there.”
Cronin said she sees two major reasons why Abby has not been able to get a placement. First, most residential services will either treat a patient’s mental health needs or their physical needs — but not both.
“We have these silos of care that don’t talk to each other,” Cronin said. “We have created a slot for medical needs or a slot for behavioral needs, but not if a patient has both. There are other patients like Abby who need both.”
The other problem, Cronin said, is that Maine DHHS does not have a staffer who is ultimately in charge of Abby’s case.
“Everybody is passing Abby as a responsibility to someone else,” Cronin said. “We don’t have one person at the top who says, ‘Everybody, let’s get together and figure this out.'” […]
• From the Racine County Eye (Wisconsin): “Children with disabilities need better mental health services, 2024 fact sheet finds”
MADISON — Wisconsin’s Office of Children’s Mental Health (OCMH) released a fact sheet this July showing that children with disabilities are more likely to need mental health services than children without.
The fact sheet also covers steps that caregivers, and others, can take to improve the mental health of children with disabilities.
According to a July 16 press release, “One in five kids has a special health care need, whether autism, asthma, diabetes, epilepsy, learning disabilities, speech or language impairments, or intellectual and developmental disabilities.”
Despite the size of this demographic, “These children with the most needs also tend to be the most underserved by our care system,” the press release reads.
[…]OCMH Director Linda Hall expressed sympathy in the press release for parents exhausted by the lack of support faced by children with disabilities.
“Often their child has multiple conditions and they can’t find the right kind of help for their child’s mental health concerns,” Hall said.
The release continues: “Insights from parents who participate in OCMH’s Collective Impact Council attest to the complexities of raising a child with disabilities as well as the interplay between their disability and their mental health.”
Bullying, exclusion and isolation are cited as common, and frequent, experiences that parents see children with disabilities go through.
“The system is constantly shaming our children by consistently reminding them that they are different and do not belong,” Robert Kaminski, an OCMH Lived Experience Partner, said in the “Insights” infographic alluded to above. “As a parent I have to figure out how to handle a situation without rejecting the child whereas our systems and schools all too often just give up.” […]
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. Our paid subscribers make this work possible!
Follow Medical Motherhood on Facebook, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.