Medical Motherhood
Medical Motherhood
Who is allowed to save the world?

Who is allowed to save the world?

The Disability Defender series continues with a nod to the caregiver work-life balance
A four-panel line drawing cartoon titled Where is the Manual for This?! By Lenore Eklund. The first panel shows The exterior of the Chamber of Righteousness, a grand hall. A speech bubble from inside says “Your resume looks fantastic.” A caption at the bottom of the panel reads “The Disability Defender continues her quest for a more equitable world.” In the second panel, four costumed superheroes sit at a desk. One that looks a bit like Superman holds a piece of paper and says “Courage during medical emergencies. Perseverance when faced with irreparable social systems. Unwavering in your love. When can you start?” In the third panel, the Disability Defender, a brown-skinned woman in a ponytail replies from across the desk. “As primary caregiver to my medically complex child, I appreciate the remote work option and flexible hours. What is the compensation?” In the fourth panel, the superheroes look askance while the Superman-like spokesperson says: “We prioritize superheroes who are essential to the chamber. There’s no budget for disability services. You know how it goes…” The Disability Defender looks shocked.

The care economy is a reality that businesses across the spectrum need to reckon with, particularly as the job market continues to improve. Flexible work options and outcomes-based metrics are key to allowing family caregivers a place in the workforce.

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.


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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 Well+Good: “Parents of Kids With Disabilities Are in Mental Health Crisis

[…]as study after study after study shows, high levels of stress and mental health strain are incredibly common among parents of kids who have disabilities.

Talk to any parent whose child has a disability, developmental condition or delay, neurodivergence, or other unique needs, and you will find that these things are true: They love their children with an inextinguishable fierceness, they're locked in a constant struggle to secure services for their children that would help them thrive, and they often feel isolated and forgotten.

All of this can negatively affect a parent’s mental health in both the short- and long-term. "Based on my clinical experience, isolation, anxiety, depression, and burnout are common mental health issues faced by parents of kids [with disabilities]," says Tasha Oswald, PhD, a psychologist and the founder and director of Open Doors Therapy, a neurodiversity-affirming counseling group. She points to the "greater responsibilities" of parents whose children will not usually meet milestones on typical timelines, if ever: "The kids will need more help from their parents along the way. In addition, there are fewer relevant parenting resources and [more] misinformation. So, your job is harder and you’re given fewer resources. And on top of it, you likely don’t have a community who gets it."

[…]To be clear, children are not the cause of parents' mental health challenges. Instead, the stress and burnout associated with parenting a child with disabilities comes as a result of navigating a complex and ever-evolving system of care. It's the expensive evaluations, the clinical visits, the endless mountains of paperwork, appointments to schedule and reschedule, phone calls to insurance companies, and—more often than you might imagine—legal battles to secure necessary services like medicine, equipment, and education. "There's a lot of trauma that goes into parenting kids like ours," says [mom Samantha] Kilgore. "But it's not from dealing with our children's challenges—it's from negotiating our child's right to exist in a world that is not set up for them. The fact that we even have to negotiate is enraging." 

Elizabeth Hughes, PhD, BCBA, the executive clinical director at the Institute for Applied Behavior Analysis in Orange, California, says that "trauma" is indeed the appropriate word to describe what parents of kids with disabilities must navigate bureaucratically and administratively.

[…]Similarly, Jessica Miller*, whose daughter was born with hearing loss, points to red tape around access to care as being problematic. "My mental health issues are not stemming from her disability," she says. "They're from how we're having to manage everything around it that the world presents to us, whether that's education systems or trying to get supportive therapies or even going to the doctor for more hearing tests."

[…]Well-meaning people often tell burned-out parents of kids with disabilities to prioritize self care, but a spa day or therapy session can't solve what's inherently a societal and systemic problem. "I've taken advantage of therapy and medication, and I've gone to different support groups," Miller says. "Those are all really important, but they're also very individualized solutions. So I try to also keep in mind: At the same time, what can I be doing on a structural level? What does that look like?" 

[…]Another important aspect of supporting parental mental health involves addressing the isolation so common among parents of disabled children. "Finding parent communities who deeply understand your situation can be validating and help you reconnect to your inner wisdom," Dr. Oswald says. "Talking with others who don’t get your parenting challenges and who give unsolicited advice or judge you can lead you to question your parenting and disconnect from your inner wisdom. Finding a supportive community can help you feel validated, appreciated, and inspired. Finding a community where you can express your worries and speak about those things that feel shameful can release you from the shame cycle."[…]

• From 10News (Tennessee): “TN expands system providing early intervention services for young children with disabilities

Tennessee is expanding the services available for young children with disabilities to those who are an additional year old.

According to a release, the federal government approved the state to start offering eligible families the choice to continue receiving services from the Tennessee Early Intervention System until the start of the school year following their child's fifth birthday. It's the full age range allowed for early intervention services in Part C of the Individuals with Disabilities Education Act.

TEIS is voluntary and offers therapy, as well as other services, to infants and young children with developmental delays or disabilities. It's free to families and in the fiscal year 2023, it provided services to around 17,990 children.[…]

• From We Are Iowa: “Iowa promises services to kids with severe mental and behavioral needs after lawsuit cites failures

Iowa’s health agency will take steps to develop home and community-based services for children with severe mental and behavioral needs as part of an initial agreement with civil rights groups that filed a class action lawsuit.

The lawsuit was filed in January on behalf of three children. It alleges that Iowa has for decades failed to meet its legal obligations to Medicaid-eligible children who should have access to individualized and coordinated care plans, in-home therapy and emergency services.

The complaint includes children who have been institutionalized for services that they were previously recommended to receive — and say they were entitled to receive, given the Medicaid Act — in their communities or homes.

"There was a desperate need to build a statewide children’s health system with an effective array of services," said Catherine Johnson, executive director of Disability Rights Iowa. “The complaint that we’ve filed alleges that these services are not available in anywhere in Iowa. They just don’t exist.”

[…]Johnson is optimistic about the work over the coming months, but she added that “time is of the essence” for these children and families.

“They would like to have these services — well, they would have liked them years ago,” she said. “There is certainly an urgency to providing these services.”

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. Thank you to our paid subscribers!

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