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Mermaids and Medicaid

An introduction to DDL Insights and a personal look at Medicaid, caregiving, and what mermaids can teach us about systems change.

Illustration of a smiling mermaid with glasses, a blue top, and a turquoise tail with lavender fins.

An Introduction to the DDL Insights page

Welcome to the Data Design Lab (DDL) blog, where you’ll find our insights sorted into two categories: Resources and Perspectives.

In the Resources section, we will share educational materials that are co-developed with our partners. In the Perspectives section, we will share musings on current disability policy topics, authored by our team and guest contributors. The perspectives section serves as a safe space for expression that facilitates dialogue with the intent of co-learning. It works together with our Instagram channel @drpriyalab. We recognize the need for a place where academics, disability community members, and allies can anonymously come together to share insights that can lead to system-level solutions. Though we borrowed Priya’s likeness, Dr. Priya is all of us. DDL will bring multiple viewpoints together in every post, to help break down complex topics into productive discussion…just in time for holiday season with family.

Great, so what about mermaids?

Mermaids are an important metaphor at DDL and are incorporated into our logo. Additionally, mermaids remind us of the starfish story, which is often summarized by the tagline of ‘…it made a difference to that one’.

Okay, so what about Medicaid?

Medicaid Home and Community-Based Services (HCBS) provide important support services for people with disabilities who live in home settings, such as with family. Without these services, people with intellectual and/or developmental disabilities (IDD) were historically sent to institutions in order to have their support needs met. And by historically, I don’t mean centuries ago…diagnoses of Down syndrome delivered via voicemail paired with advice to parents to send babies to institutions happened as recently as the 1980s.

What?! Surely things have improved since then, right? Like now Medicaid HCBS covers everything families need to provide care at home for a loved one with a disability?

Well, not everything. Society assumes that federal programs (such as Medicare) and federal/state programs (such as Medicaid HCBS), completely provide for the needs of disabled adults who live with family members in the community. Medicaid data estimates that it costs around $50,000 per year to support an adult with IDD.

KFF chart of annual Medicaid spending per enrollee. Ages 0–18: $12,571 with IDD and $3,073 without. Ages 19–64: $50,086 with IDD and $6,873 without.
Source: KFF, 5 Key Facts About Medicaid Coverage for People with IDD (Figure 5)2

So you’re saying costs are high and it still doesn’t completely cover the needs of families? Then there must be fraud, waste, and abuse in the system, right?

Well, yes and no. Any system has things it does well and things that need improvement. The high cost isn’t the problem; it is just a symptom of a bigger issue. Getting rid of Medicaid isn’t the answer, because then many people would have no choice but to live in institutions, which is not a popular choice in the disability community…just ask an adult with IDD if they would want to live in an institution or ask parents of children with IDD if they would prefer to keep their child in the family home. If there is no Medicaid, then for people with IDD and families, there is automatically no choice about a very personal, impactful decision—where someone should live.

Medicaid HCBS is critical for the IDD community and the needs of the IDD community are greater than the current system supports; both of these things are true at the same time. There are families that don’t receive any Medicaid support at all, for a variety of reasons, including long waitlists to receive services1. More on waitlists in a future post, but for now, it’s important to note that people with IDD are 73% of the total waiver waiting list population2. Though most people on waiting lists have IDD, people with IDD comprise fewer than half of the people served through 1915(c) waivers (the largest source of Medicaid HCBS spending).2

So what happens to people with IDD who are on the waitlist for services?

Then they and their families are responsible for all costs. Even with Medicaid, there are important gaps in coverage that families must figure out how to fill in order to keep their loved one in the family home setting. Everyone in the IDD community feels squeezed by caregiver burnout3.

Everyone? So feeling squeezed and burnout are common?

The disability community is all too familiar with self-advocate and caregiver burnout. Everyone knows someone who had a crisis and needed extra support, especially when you consider how many family units/support networks have aging caregivers, siblings trying to navigate caring for aging parents while also raising children, and other life things.

Now imagine that on top of life things, you had to determine where to live based on the Medicaid benefits a state chooses to offer. It is hard to navigate a system where support available depends heavily upon where you live, as this blog post illustrates4.

There are thousands of stories just like this. It’s like seeing thousands of starfish stranded on a beach and trying to throw as many back as possible into the ocean…one at a time, crisis after crisis.

Wait…did you just subtly pivot back to mermaids?

Yes! When we see many self-advocates and families having to solve the same issue one at a time mostly on their own, DDL asks questions utilizing systems thinking, such as:

  • How did this starfish get stranded on this beach?
  • Why are so many starfish getting stranded?
  • Who is burning out by repeatedly having to throw starfish back in the ocean one at a time?
  • What system(s) are supposed to be preventing starfish from becoming stranded on the beach?
  • When did starfish start getting stranded?
  • Where are the highest number of stranded starfish?

By asking questions together like this, we can better understand the root causes of issues and co-create sustainable solutions. Bringing multiple stakeholders together results in policy decisions where all involved can feel empowered, like they had a say in what happens versus yet another decision happening to them, as is so often the case in disability policy. DDL embodies servant leadership, amplifying disabled perspectives in alignment with the disability rights movement mantra of ‘nothing about us without us’. If we are making policies to help starfish, then we should have starfish at the table.

Starfish, got it…but technically you promised you’d directly connect mermaids to Medicaid

Bet. Once upon a time, in Atlanta, GA, a young girl asked her parents to explain Down syndrome in the mall food court, so she could better understand her older brother. She didn’t understand most of what they said but remembered the word ‘chromosomes’ and something about having ‘extra’. Her brother, the expert on what it’s actually like to live with Down syndrome, similarly listened closely to the detailed science explanation they were given by the adults.

In the Down syndrome community, every parent can tell you the story of how Down syndrome was first explained to siblings—what age the kiddos were, who was there, where they were when the sibling first asked about it, probably the season of the year and what the parent was wearing. Every sibling can also tell you the same story, though it will likely sound completely different. I don’t remember the science explanation that my parents gave me, but I do remember that my brother sneezed a giant snot-ball of a sneeze after they taught us about chromosomes and squealed with delight “I DID IT, MY EXTRA CHROMOSOME, GRAB A TISSUE!”. We scooped up the snot-ball and together presented it to our parents, triumphantly exclaiming that we had solved the extra chromosome issue that for some reason science/medicine/experts couldn’t seem to figure out. We high fived each other and went about our day, probably setting up another play session of hero ninja turtles, My Little Ponies/warrior horses, and evil dolls…but that story always stayed with me. My brother’s elite level of eternal optimism guides my approach regarding disability advocacy.

Fast forward to ten years old, when I famously refused to go to school “Until we come up with a plan for Ankur’s care”. Though he didn’t have immediate care needs, I could foresee future caregiving needs and automatically factored that into my choice of career, friends, city to live in, partner, and whether to have children. For most, a village is a ‘nice to have’, but for families that include a loved one with a disability, it becomes a ‘must have’…and as the village itself ages, the caregiver burnout squeeze grips tighter and tighter, causing health issues in caregivers themselves. Though my parents did an amazing job of reassuring me that it was not my responsibility to bear, my love for him kept the question of “How will we provide for my brother’s care and employment in the long-term?” on my heart and soul for 40 years. It was on my brain so heavily that my brain decided I didn’t have time to learn how to see in 3D, but that’s another story.

I am hopeful that now in 2026, while we are both in our 40s, Medicaid policy can be revised to ensure that support for my brother will be there as he ages. However, the physician in me ‘hopes for the best, plans for the worst’. While I engage in education, dialogue, and advocacy regarding Medicaid policy and health services research, I necessarily live a double life…as a professional mermaid.

That’s right, in 2026, the only solution I have found that provides my brother stable employment as he ages, a leadership title he so very much deserves and has earned by working his entire life, and keeps him physically active…is to offer inclusive swim lessons brought to you by a professional mermaid named Lunara Sunset (me) and a professional Land Leader (my brother).

Am I saying that turning into a mermaid is a feasible solution for most people? No. Am I saying that complex problems require innovative solutions? Yes.

Illustration of a smiling mermaid with glasses, a blue top and a turquoise tail with lavender fins.
Art Credit: Brittany Granville

I’d rather just get to be his sister and swim for fun, but for now, we might as well share stories with each other and co-create solutions that don’t require this level of whimsy. #MermaidsAndMedicaid

Have a question or a perspective to share? Message @DrPriyaLab on Instagram and look out for our polls.

References

  1. KFF: A Look at Waiting Lists for Medicaid Home- and Community-Based Services from 2016 to 2024
  2. KFF: 5 Key Facts About Medicaid Coverage for People with Intellectual and Developmental Disabilities (IDD)
  3. Institute on Community Integration: Squeezed Caregivers Report Less Help, More Stress
  4. AcademyHealth: Medicaid HCBS Waivers: Where You Live Dictates Your Care

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