**Why the U.S. v. State of Maine Case Proves the Need to Designate People with Disabilities as a Medically Underserved Population**

By Vanessa Rastović, JD

In late November, the United States Department of Justice (DOJ) and the State of Maine agreed to settle a suit the DOJ brought against the State for violations of the ADA. The recent DOJ case against the State of Maine revealed systemic failures to provide adequate community-based healthcare services for children with mental health disabilities, violating Title II of the Americans with Disabilities Act (ADA) as interpreted in Olmstead v. L.C. However, these state-level challenges are a microcosm of a national-level problem.

The U.S. v. State of Maine case highlights a pervasive, yet overlooked crisis: the systemic failure to provide adequate community-based healthcare services to those with disabilities. In Maine, this often led to unnecessary and lengthy institutionalization of children who could have and wanted to be treated in their communities, despite Maine and its Medicaid program, MaineCare, having the resources to accommodate these community-based services reasonably.

This failure, as outlined in the legal challenge, extends from neglecting investments in community-based care, the impacts of which left parents with no meaningful options and forced children with disabilities into institutional settings. The inequities exposed in this case underscore the urgent need to designate people with disabilities as a Medically Underserved Population (MUP). An MUP designation is imperative if states are to invest in and implement community-based health services adequately. Such a designation is essential to ensure equitable access to healthcare, prevent unnecessary institutionalization, and address the risks of de facto segregation.

In Olmstead v L.C., the Supreme Court ruled that unjustified segregation of people with disabilities constitutes discrimination under the Americans with Disabilities Act (ADA). This means states must provide community-based services to individuals with disabilities when appropriate, the affected person does not oppose it, and community-based services can be reasonably accommodated, considering available resources. The ADA protects the right of people with disabilities to live in their communities, and unjustified institutionalization constitutes unlawful segregation. DOJ’s investigation found that all these criteria were met in Maine. Yet, many states struggle with this systemic problem, demonstrating the need for a national solution. States need support to implement systems of care that align with the ADA. Yet, tools like the Medically Underserved Population (MUP) designation that could help address and alleviate some of these problems are denied due to an outdated federal designation system used throughout the Health and Human Services Department (HHS). The DOJ’s investigation in Maine illustrates the designation system's unintended negative impacts.

“The systemic healthcare failures exposed by the U.S. v. State of Maine case illustrate the urgent need for equitable treatment of children with disabilities who remain with their families in their communities.”

The investigation found that Maine has and maintains a system of behavioral healthcare services, including crisis, long-term, and therapeutic foster care for children, which it administers and funds through a variety of agencies, departments, and programs, and the state offers those services in the community and segregated settings. In Maine, like many other states, behavioral healthcare unavailability is demonstrated by long waitlists for community-based services, a systemic state-level failure to adequately invest in, develop, and maintain a network of community-based providers, and crisis services that are often unavailable and often lead to hospital emergency department use or police involvement, which criminalizes disability-related behaviors.

In Maine, evidence showed that hundreds of children with disabilities faced immense barriers to accessing behavioral health services, with wait times averaging 328 days for targeted case management and 172 days for home-based treatment. The investigation also found that most of these children could be treated appropriately in their communities but struggled to access those services due to the state’s lack of investment in community-based programs. Because these community-based health services are not available when children with behavioral health disabilities need them, the result is often unnecessary segregation or serious risk of segregation in both state-run and for-profit institutions. The lack of community-based health services led to institutions such as psychiatric hospitals, juvenile detention centers, and out-of-state residential facilities being used inappropriately and, in effect, segregating people with disabilities, thus violating the Americans with Disabilities Act. Children with disabilities, especially children with racialized and other marginalized intersecting identities, who become justice-involved, frequently become hopelessly entangled in a system of institutional segregation in residential treatment and juvenile detention facilities away from their families and homes.

The DOJ's investigation found that juvenile detention institutions had developed into de facto psychiatric facilities where children were kept longer than necessary due to the lack of health services where they and their families live. The problem is cyclical. Lack of community-based services leads to increased demand for institutional services, which are costly and waste funding that could be spent on community-level care. Children with behavioral health disabilities and their families are left with no meaningful choice other than institutionalization. States like Maine need support from HHS to break this cycle, which is why either changing the way MUPs are designated, or making a reasonable accommodation for children with disabilities in the designation process is critical.

The MUP designation could unlock tools and funding for healthcare services for children with disabilities where they live, reducing reliance on institutional settings. The current designation rules fail to acknowledge that children and many adults with disabilities have no control over where they live. Some children with disabilities may live in a Medically Underserved Area (MUA), but some do not. An MUA is a defined geographic area with a general lack of healthcare services that affects all the residents, not just a specific sub-population, like children with disabilities. Rural areas are a good example; many qualify as MUAs. MUAs receive additional resources and funding to alleviate these problems. The Health Resources and Services Administration (HRSA) also designates facilities like state hospitals, prisons, jails, juvenile detention centers, and other institutional settings as Health Professional Shortage Areas (HPSAs) when they experience a shortage of healthcare providers. These facility-based HPSAs are recognized due to the unique healthcare challenges within institutional environments. These HPSAs and MUAs qualify for additional assistance and funding through 30 federal healthcare programs. However, the formula HRSA developed in the mid-1970s to designate HPSAs and MUAs fails to consider that some sub-populations, like children with disabilities, are medically underserved wherever they live.

“Consider contacting your Congressional Representative to urge them to co-sponsor and support the HEADs UP Act... Likewise, please reach out to your Senators and ask them to introduce and support a HEADs UP Act Senate companion bill. ”

Decades ago, a General Accountability Office report to Congress noted that HPSAs and MUAs didn’t solve the problem of sub-populations experiencing barriers to care due to specific characteristics they share, like children with disabilities. Congress created the Medically Underserved Population designation to close this gap. Unfortunately, the U.S. v. Maine case proves the problem has not been solved.

The Health Resources and Services Administration requires Medically Underserved Populations to comprise more than 30 percent of the general population of an area to obtain the designation. HRSA’s current MUP designation requirements unintentionally prioritize funding for institutional care over more efficient and cost-effective community-based care, discouraging state-level investment in integrated healthcare models. The impact of the MUP, HPSA, and MUA systems, as they currently exist, discourages state investment in community-based healthcare for children with behavioral disabilities while incentivizing the funding and maintenance of institutions that often function as containment zones. The impacts are disastrous for children with disabilities and their families.

Institutionalization separates children from families and communities, leading to trauma and stagnation. Juvenile detention facilities often amplify this harm through restrictive practices like solitary confinement. Institutional care is more expensive than efficient and economical community-based healthcare alternatives. The lack of accessible services also stifles workforce participation among people with disabilities and their caregivers. Behavioral and oral health gaps exacerbate broader health inequities, reinforcing systemic neglect and adverse outcomes. Health professionals who serve children with disabilities while practicing in non-HPSA/MUA communities are blocked from opportunities to participate in loan repayment programs even though those professionals are providing a valuable service to a medically underserved population.

Modifying MUP criteria to make reasonable accommodations for children with behavioral health disabilities can channel resources and funding to support states’ investment in and maintenance of necessary community-based health services and away from harmful institutionalized and segregated settings. HRSA could make this reasonable accommodation available through the MUP program.

The systemic healthcare failures exposed by the U.S. v. State of Maine case illustrate the urgent need for equitable treatment of children with disabilities who remain with their families in their communities. Policymakers, healthcare providers, and advocates must act collectively to eliminate these disparities and ensure no individual is forced into institutionalization due to inadequate investment in community-based healthcare.

Children with disabilities need your voice. The Healthcare Extension and Accessibility for Developmentally Disabled and Underserved Population

(HEADs UP) Act was reintroduced in June of 2023 by Representatives Seth Moulton, Brian Fitzpatrick, Debbie Dingell, and Joe Morelle in the US House of Representatives. Over the last year, the HEADs UP Act has earned 21 co-sponsors and was the subject of a Roundtable discussion at the Capitol in July. If passed, the HEADs UP Act would designate people with IDD as a Special Medically Underserved Population (SMUP). This special MUP designation would open access to 30 federal programs and direct needed funding to support community-based behavioral, oral, and physical healthcare for children with disabilities in Maine and anywhere in America where children with disabilities live.

Please consider contacting your Congressional Representative to urge them to co-sponsor and support the HEADs UP Act. If your Representative is already a sponsor, please thank them for their support. Likewise, please reach out to your Senators and ask them to introduce and support a HEADs UP Act Senate companion bill. Children with disabilities have the right to receive healthcare where they live-with their families in their communities.

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Why the U.S. v. State of Maine Case Proves the Need to Designate People with Disabilities as a Medically Underserved Population

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**Why the U.S. v. State of Maine Case Proves the Need to Designate People with Disabilities as a Medically Underserved Population**