When a parent loses access to treatment, the court is waiting.
Part two of a three-part May Day series on parental rights and the systems that fail working families.
By Michael Phillips | Father & Co.
There is a scenario that plays out in family courts across the country with enough regularity that it has its own vocabulary. A parent with a disability — physical, psychiatric, or developmental — loses access to the treatment or support services that keep them stable and functional. Their condition becomes visible. Their co-parent, or a child welfare agency, raises the question of parental fitness. And a system that was never designed to distinguish between a disability and a deficiency begins making decisions that will define the rest of that parent’s relationship with their child.
I have watched this dynamic operate at close range. The details vary. The structure does not.
What connects these cases — and what rarely gets named plainly in policy conversations — is that Medicaid is often the single thread holding the entire arrangement together. When that thread breaks, it does not just affect the parent’s health. It affects their legal standing as a parent.
The Law Says One Thing. The Courts Do Another.
The legal framework governing disabled parents in custody proceedings is, on paper, protective. Title II of the Americans with Disabilities Act prohibits child welfare agencies and courts from discriminating against parents on the basis of disability. The ADA.gov guidance is unambiguous: courts and agencies may not rely on stereotypes about disability, and they must make reasonable modifications to ensure disabled parents have equal opportunity to participate in proceedings and retain custody of their children.
The National Council on Disability issued a landmark report in 2012 — Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children — that documented the gap between the law and its application. Its findings were stark. Parents with disabilities are overly, and often inappropriately, referred to child welfare services, and once involved, are permanently separated at disproportionately high rates. The report identified parents with intellectual disabilities and parents with psychiatric disabilities as facing the most severe discrimination — driven not by evidence of harm to their children, but by stereotypes, inadequate individualized assessments, and the failure of systems to provide the services those parents needed to function.
In every state, disability of the parent can be included in determining the best interest of the child. A handful of states — including Maryland — allow physical disability as a contributing factor in custody determinations even without evidence of abuse or neglect.
The law says disability cannot be the basis for denying custody. State statutes in multiple jurisdictions make it a relevant factor anyway. Courts operate somewhere in between, with wide discretion and no uniform standard for how disability should be weighed. The result is a system in which the written protection and the actual practice bear little resemblance to each other.
What Medicaid Actually Covers — and What Disappears Without It
For parents with disabilities, Medicaid is frequently not a supplemental benefit. It is the entire infrastructure that makes stable parenting possible.
Medicaid covered 26 percent of adults with serious mental illness and 17 percent of adults with substance use disorders as of 2015. It is the only source of funding for some specialized behavioral health services, and the primary insurance coverage for low-income Americans with psychiatric diagnoses.
For a parent managing a serious mental illness — bipolar disorder, PTSD, schizophrenia, major depression — Medicaid typically covers psychiatric appointments, medication, crisis intervention, and in some states, intensive community-based services that allow that parent to remain in their home and maintain their parenting schedule. Remove that coverage, and the parent does not simply go without treatment. They go without the documented treatment compliance that courts use to assess parental fitness.
This is the mechanism that does not get discussed plainly enough: courts evaluating a disabled parent’s fitness are, in significant part, evaluating whether that parent is receiving and adhering to treatment. Research on parents treated in public mental health settings found that the risk of losing child custody or parental rights among parents with serious mental illness may be as high as 60 percent. There is also evidence that for some parents, fear of losing custody results in delaying needed treatment.
The fear is rational. The catch-22 is real. A parent who loses Medicaid coverage loses access to the treatment that would demonstrate their fitness. A parent who seeks treatment through the wrong channel risks creating a record that gets used against them. A parent who avoids treatment to avoid scrutiny deteriorates. Each path leads to the same place.
When Custody Relinquishment Becomes the Only Option
The dynamics described above apply to parents managing their own disabilities. But there is a parallel and equally damaging pattern that affects parents of children with disabilities — one where the gap in Medicaid coverage does not just threaten parental fitness assessments, but forces parents to voluntarily surrender legal custody of their children in order to access treatment that those children cannot get any other way.
A survey by the Maryland Coalition of Families found that 27 percent of parents were advised to relinquish custody or to refuse to bring their children home from hospitals in order to qualify for Medicaid or other agency resources to pay for costly services, including residential mental health treatment.
This is not an edge case. It is a documented, recurring feature of a system in which the financing of mental health treatment for children with serious psychiatric conditions is structured in a way that requires the destruction of the family unit as a precondition for access to care. The child enters the state foster care system. The state becomes obligated to fund treatment. The parent — who did nothing wrong, who sought help, who was following advice — becomes a non-custodial parent navigating a family court system with all the disadvantages that entails.
Families that are living in poverty but do not qualify for Medicaid or CHIP are even more desperate. As a last resort, when all else has failed, some families are still faced with accessing mental health care through the child welfare or juvenile justice systems. In order to receive this publicly-funded care, families must relinquish parental custody to the state.
The breaking of the parent-child relationship in these cases is not the result of abuse, neglect, or parental failure. It is the result of a financing gap — a policy choice that was made, in many cases, without any consideration of what it would do to families.
The ADA Gap Nobody Wants to Close
Federal law requires courts and child welfare agencies to make reasonable accommodations for disabled parents. In practice, those accommodations are almost never provided proactively. They must be requested, documented, and litigated — by parents who are already managing a disability, already navigating a custody dispute, and often without legal representation.
The American Bar Association adopted a resolution in 2017 against disability discrimination in parental rights proceedings, providing that custody, visitation, and access shall not be denied or restricted based on a parent’s disability, and that there must be a showing that the disability is causally related to harm or an imminent risk of harm to the child. The resolution was adopted. It is not law. It is not binding on any court. It is a statement of principle that the system it describes has largely chosen not to implement.
The gap between the ADA’s mandate and family court practice is, in structural terms, identical to the enforcement gap described in Part One of this series. The right exists on paper. The mechanism for enforcing it does not exist in practice. The parent who is harmed by the gap bears the full cost of trying to close it — in legal fees, in litigation time, and in parenting time lost while the process runs its course.
I have seen firsthand how quickly a disability can be reframed in a custody context — not as a condition being managed, but as a liability being assessed. The treatment that was supposed to demonstrate stability becomes evidence of instability. The diagnosis that was supposed to generate accommodation becomes a basis for restriction. The system that was supposed to protect the parent becomes the mechanism of harm.
What Accountability Would Look Like
The accountability framework here runs across three institutions, not one.
Courts need enforceable standards for how disability is assessed in custody proceedings — not the discretionary, stereotype-prone process that the NCD documented in 2012, but individualized evaluation that asks whether the disability causes harm, not whether the disability exists.
Child welfare agencies need a mandate to provide accommodation and support services to disabled parents before any custody action is initiated — not as an option, but as a legal obligation with consequences for non-compliance.
And Medicaid policy needs to account for the custody consequences of coverage gaps. The decision to reduce, restrict, or eliminate Medicaid coverage for a parent or a child is not a neutral health policy choice. It is a decision with downstream legal consequences for families — consequences that fall hardest on the parents least equipped to absorb them.
The disability rights movement has spent decades making the argument that access to services is a civil right. The parental rights community has spent decades making the argument that the parent-child relationship is a fundamental liberty interest. These two arguments belong in the same conversation. They have not yet had it at sufficient volume.
May Day is a day for naming what is owed to people the system has decided to overlook. Disabled parents navigating custody proceedings are owed a system that treats their rights as real — not as a principle to be acknowledged and then discretionarily discarded.
They are owed the same thing every parent is owed: a court that does what it said it would do.
This is Part Two of a three-part May Day series from Father & Co. Part One: “The Unpaid Shift.” Part Three publishes today: “Parental Alienation as Labor Exploitation.”
Sources and background: National Council on Disability (2012), Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children (ncd.gov). ADA.gov, “Protecting the Rights of Parents and Prospective Parents with Disabilities” (ada.gov/resources/protecting-parent-rights). KFF (2017), “Medicaid’s Role in Financing Behavioral Health Services for Low-Income Individuals” (kff.org). Maryland Coalition of Families (2002), cited in SAMHSA/NASMHPD (2020), Relinquishing Custody for Mental Health Services. Park et al. (2006), cited in National Academies of Sciences, Parenting Matters (NCBI Bookshelf, NBK402018). American Bar Association Resolution 114 (2017), adopted by the House of Delegates. Americans with Disabilities Act, Title II, 42 U.S.C. § 12132.
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