Medicaid is Developing a New Scorecard for Disabled Children's Services. Here's How You Can Weigh In.
Plus: Five students held in boxes; Feds deploy $144M in special ed funds; Little-known financial aid route; H.R. 1's continuing fallout; North Carolina and Maine fight for services and Irish kids wait
There is a very complicated process afoot to judge whether Medicaid services for children are actually working.
I will try to break it down as best I can because it’s very important for you to know about it — and because there is an opportunity to shape it in these early stages.
The Centers for Medicare and Medicaid Services has contracted with New Jersey-based Mathematica to create measures for children’s home- and community-based services. This is a major funding pathway for disabled children’s services — such as home care hours, therapy and medical equipment.
I will be the first to say that children’s services are not ideal. They are complex, frustrating and often incentivize behavior that is not family-friendly.
So creating new ways to collect data on these services could make them work more efficiently. But, collecting the wrong data could add to the administrative burden for families and providers, making these services even worse.
As the old adage goes: What you measure matters. So measure what matters.
From my perspective, Mathematica’s current proposal is not ideal.
Fortunately, there’s time to fix it. There is a public comment period that ends June 8, 2026.
Unfortunately, it takes quite a bit of time to understand the proposal and how you might want it to change.
In the simplest terms, there are two different questions Mathematica is asking:
Do you like the priority order we put our 14 new measures in? (CMS has signaled they will probably select five.)
And: what are your answers to 10 specific questions about the measures?
So, I chatted with a few people in the know and provided a cheat sheet for you. For the first question, this is the comment I submitted. Perhaps yours will be different, but let me break down, in brief, what I think is going on with the priority rankings:
The proposal is too focused on completing documentation and not focused enough on actual outcomes for children and families.
The proposal needs to focus more on prevention strategies, such as service delivery and self-direction. Already, thousands of families waste their precious free time on a mirage of services that only exist on paper.
We already spend so much time completing paperwork like person-centered plans and other documentation. I would recommend those measures be ranked lower unless they are tied to family satisfaction and service delivery. I don’t want completion rates of paperwork treated as a proxy for access.
Overall, CMS should prioritize measures that answer the questions families most need answered:
Are children receiving the services they are assessed and authorized to receive?
Can families direct care in ways that preserve safety, continuity, and dignity?
Are children able to remain at home and participate in school, family, and community life?
Are states identifying and correcting gaps before families reach crisis?
If the data support movement in this direction, I think it’s a win. But if they just generate more hoops to jump through, we will be even further behind.
In addition to the priority ranking, there are 10 specific questions. A lot of them have to do with ages of children, such as whether there should be a minimum age for certain measures or whether there should be age groups. The public comment I developed in collaboration with others for that is here.
If you are going to submit a comment, please be sure to follow the instructions on the website precisely. And: Do it before June 8.
This is the first step of a longer process. If CMS chooses to adopt any of these measures, the next step would be a rulemaking process, which will have its own notice and public comment period.
Let’s get in on the ground floor to demand real access for children and no new administrative burdens.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Times Union: “State finds school district held 5 students in wooden boxes”
A public school district in northern New York broke state education regulations at least six times when it chose to confine students with disabilities in padded, wooden boxes in the classroom, an investigation by the New York State Education Department found.
The state ordered the Salmon River Central School District to change its policies and special education practices by this fall and submit paperwork to demonstrate its compliance.
[…]The release of the state report is the latest development in a monthslong saga that resulted in criminal investigations, the introduction of new legislation, condemnation from the governor and the departures of multiple school administrators in the district since mid-December, when photos of one of the crates emerged on Facebook.[…]
• From Disability Scoop: “Ed Department Unleashes $144 Million For Special Education”
[…]The U.S. Department of Education said this week that it will award an additional $144 million to state and local governments to use for IDEA programs.
[…]At the same time, federal officials are touting a new option for states.
[…]“For example, if an expectant mother learns through genetic testing that her child will be born with Down Syndrome and will therefore be eligible for Part C early intervention (EI) services in her State upon birth, a State choosing to use this flexibility could work with her to ensure she understands how the IDEA Part C system operates, refer her for services, and, within 45 days of the child’s birth, ensure that an individualized family services plan (IFSP) is established to provide IDEA Part C EI services,” the guidance states.[…]
• From Forbes: “How To Provide For Children Who Fall Between Disabled And Independent”
[…]According to Andrew H. Hook, former president of the Special Needs Alliance and an ACTEC Fellow, “Most families and their advisors have little to no understanding that a beneficiary can qualify as an EDB through the ‘chronically ill’ category without a formal SSI/SSDI determination of disability.” Many advisors default to the SSI/SSDI route because that is the one they know, leaving the chronically ill pathway under IRC §7702B(c)(2) largely underused.[…]
• From Straight Arrow News: “What’s behind the vanishing safety net for families with disabled children”
[…]There’s an alarming shortage of the direct support workforce, Kim Musheno, Senior Director of Medicaid Policy at The Arc of the United States, told Straight Arrow.
“If no provider agency has staff available, or if wages are too low to recruit and retain workers, those hours are effectively meaningless,” she said.
[…]Today, roughly 63 million American adults — or one in four — provide caregiving support to adults or children with a medical condition or disability, according to the same 2025 report. Collectively, family caregivers provide an estimated $1 trillion in unpaid care each year.
For many families, navigating the system creates one more overwhelming burden to wrangle.
[…]But unlike institutional care, home- and community-based services (HCBS) are optional under Medicaid. States can “limit the number of people served, create waiting lists, restrict hours, or narrow eligibility even when the need is clear,” said Musheno.
Families who spoke with Straight Arrow said federal cuts of the One Big Beautiful Bill, which includes $911 billion in Medicaid cuts over the next several years, will directly impact their states’ HCBS services.[…]
• From Portland Press Herald (Maine): “Mixed reaction to changes in Medicaid services for children with disabilities”
Advocates had a mixed response to rule changes the Maine Department of Health and Human Services recently made for programs that serve disabled children.
The child advocates had raised the alarm earlier this year about the proposed rule changes for Medicaid services that aim to improve behavioral and developmental skills for disabled children. They contended the pending rule changes would restrict access by making it harder for some children to qualify for the programs.
DHHS received hundreds of public comments against the changes when they were pending this winter. The agency made improvements to the final rules, which were adopted at the end of April, but there’s still numerous concerns, said Nancy Cronin, executive director of the Maine Developmental Disabilities Council.[…]
• From NC Health News (North Carolina): “NC families with disabled children press lawmakers to maintain funding as federal Medicaid cuts loom”
[…]Home care agencies have more needs than their current workforce can meet. About 20 percent of home care aide positions go unfilled at any given time. “And then the turnover, just churn,” [home care advocacy group leader Lee] Dobson added, runs between 50 percent and 80 percent. “You’re just always trying to recruit staff.”
Those people who provide Medicaid-reimbursed personal care services received a bump in pay near the end of the pandemic. That helped retention, but advocates are afraid that those dollars could go away as North Carolina’s Medicaid budget will be under increased pressure this budget cycle.
Dobson said several bills have been introduced that would fund all these services, plus supply $120 million to increase salaries for personal care service providers. None of those bills have moved past the introductory stage.[…]
• From The Irish Examiner: “Children with disabilities 'being failed twice' by lack of services and system 'that doesn't recognise their needs'“
Waiting lists for children with an intellectual disability to be referred to the HSE’s child mental health services almost doubled in 2025 as a lack of resources delayed the process, new figures reveal.
[…]The Irish Examiner previously reported mental health services for children with intellectual disabilities are funded at less than half the HSE’s own requirements for a fully functioning service. […]
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! Not ready to subscribe but like what you read here? Buy me a coffee.
Follow Medical Motherhood on Facebook, Bluesky, X, TikTok, Instagram or Pinterest. Visit the Medical Motherhood merchandise store.