Image of a hospital corridor.
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A MOTHER’S recent New York Times essay on her struggle to help her adult son, who suffers from schizophrenia, has sparked the latest round of a longstanding national debate over whether families should have greater access to legal proceedings that determine treatment for their loved ones. Some propose a family bill of rights: awareness, presence, and voice.

They are asking the wrong question. Or rather, they are asking the right question about the wrong problem.

The problem is not that families lack adequate standing in commitment hearings, where courts decide whether someone can be involuntarily placed in treatment. The problem is what those hearings route people into.

In Massachusetts, we know what that is: a system that places people with serious mental illness in nursing facilities and other institutional settings not because those settings are clinically appropriate, but because the community infrastructure that would allow them to live otherwise does not exist at sufficient scale. 

Fixing the hearing process without fixing the system is like training the triage nurse more carefully when the only ward with open beds is the one people never leave.

I have spent more than 40 years inside health and human services administration in Massachusetts, including the early years of deinstitutionalization. I lived in one of the state’s first group homes as a full-time residential “parent” while completing my doctorate at Brandeis. I know what happens when the promise of community integration is made without the infrastructure to keep it.

The promise becomes a talking point. The institution absorbs the unmet need. And the cycle the mother in the Times essay describes — hospitalization, discharge, streets, crisis, hospitalization again — continues, not because families lack legal standing, but because there is nowhere for her son to land that is not an emergency room or a nursing facility.

Two years ago, Massachusetts made a different kind of promise. In April 2024, the state signed on to the Marsters v. Healey settlement, a federal court-enforced agreement to transition at least 2,400 residents with serious mental illness and other disabilities out of nursing facilities and into community settings over eight years, backed by projected investments exceeding $1 billion.

It is the most structurally honest answer this state has ever given to the question of what people with serious mental illness need: not better access to commitment proceedings, but a legally enforceable right to live outside institutions, with the community infrastructure to make that possible.

In its first year, the settlement produced real results: more than 1,200 residents received information about their transition rights, 750 individuals with serious mental illness gained behavioral health coordination supports, and 720 were enrolled in transition programming — the individualized, person-centered process of identifying where someone will live, what services they will need, and how those services will be in place before, not after, they walk out the door.

These are not small numbers. They represent people who had been told, implicitly and explicitly, that the nursing facility was their permanent home — and who discovered, with the help of court-mandated transition liaisons, that it did not have to be.

The promise of the landmark Marsters settlement, however, is now colliding with potential cuts to the very funding needed to support the move to community care that the case calls for. These would undercut the ability to transition 2,400 nursing home residents to community settings, as mandated, never mind the spirit of the settlement to go beyond that figure.

Gov. Healey’s FY27 budget proposal calls for at least $168 million in gross savings to MassHealth, the state Medicaid program, through cuts to three core long-term services and supports programs—personal care attendants, adult day health, and adult foster care. These are the very supports that allow older adults and people with disabilities to remain outside institutions. And that is only the state layer.

When combined with anticipated federal Medicaid policy changes under President Trump’s so-called One Big Beautiful Bill Act, which could reduce Massachusetts’s federal matching funds or financing flexibility, the effective pressure on long-term services and supports approaches $300 to $400 million.

This is the Massachusetts moment the bioethics conversation is missing. What families of people with serious mental illness in this state need is not a bill of rights for commitment hearings. They need a full bill of rights for securing the most appropriate support and care for their loved one. 

There are four things that Massachusetts has the legal mandate, the institutional knowledge, and, if it chooses, the political will to provide.

First: full implementation of the Marsters settlement, protected from budget pressure. The settlement is not a program. It is a court order. It carries legal obligations that the budget process does not override. But implementation requires community mental health workers, transition liaisons, behavioral health coordination, peer support specialists, and housing with services — all of which are categories vulnerable to the cuts currently proposed. The legislature should be explicit: Marsters’ implementation funding is not discretionary. It is a legal obligation of the Commonwealth.

Second: a community mental health infrastructure built to meet the demand that the settlement is creating. The Marsters settlement will move people out of nursing facilities. Those people will need somewhere to go. That means supported housing, treatment teams, peer support at scale, crisis stabilization capacity outside the emergency room, and outpatient psychiatric services with wait times measured in days rather than months. Massachusetts has chronically underfunded each of these. The IMD exclusion, the federal Medicaid rule that limits reimbursement for inpatient psychiatric care in larger facilities, has pushed people with serious mental illness into nursing facilities for decades. The answer to the IMD exclusion is not better nursing facility placement. It is the community infrastructure that the exclusion was supposed to incentivize.

Third: peer support is recognized and funded as a clinical infrastructure, not a supplement. The research on peer support for people with serious mental illness is detailed and has been clear for years: individuals with lived experience of mental illness, trained as peer specialists, produce measurably better engagement, retention, and recovery outcomes than clinical services delivered without peer accompaniment. Massachusetts has a peer support workforce. It is underpaid, under-supported, and treated as an add-on to the real system rather than as a constitutive part of it. That is both a resource allocation problem and a values problem. In public systems, they are rarely distinguishable. What a system pays for is what a system believes in. The policy solution is to reimburse peer support services at rates that reflect their clinical value and build them into the service array that the Marsters settlement is creating.

Fourth: housing with services, not services without housing. The mother in the Times essay is watching her son cycle through hospitalizations and time on city streets. Cycling is not a symptom of insufficient family authority; it is a symptom of a system that provides treatment without tenancy. Stable housing is the precondition for psychiatric stability, not its reward.

Massachusetts has made substantial commitments to housing production. Almost none of that production is designed around people with serious mental illness who need both housing and services simultaneously, in settings they choose, with the right to stay. The Marsters settlement creates an obligation to connect those dots. The budget should fund it.

The families of people with serious mental illness in Massachusetts deserve to be heard. As the FY27 budget is debated, the Legislature should fully fund Marsters implementation and community mental health services. This is the moment to act and ensure that legislative decisions align with families’ real needs.

Dignity Alliance Massachusetts, the nonprofit advocacy organization formed in 2020 that I am part of, includes people with serious mental illness, family members who have navigated the crisis system, clinicians who work inside it, and advocates who have spent careers trying to change it. What we have learned from collective experience is that the system that families are pleading with us to help their relatives navigate is not failing them because they lack rights within it; it is failing them because it was designed around institutional capacity rather than human need.

Giving families better access to a system designed around institutional capacity will not change what the system produces. Building the community infrastructure the system was supposed to produce — and that the Marsters settlement now legally requires — will.

The moral conversation is important, but the budget conversation is urgent. Massachusetts faces a critical juncture. To fulfill its promises, it must invest in community infrastructure now. The future of families and individuals with serious mental illness depends on acting with both conscience and commitment.

James Lomastro is a member of Dignity Alliance Massachusetts. He is a national surveyor of health care programs for CARF International, an independent, nonprofit accreditor of health and human services.