A Forum for Aging, Disability, and Long-Term Care Reform
August 14, 2026
“Every person deserves the opportunity to live with dignity, independence and agency in the community they call home. That’s exactly what the Community Living Initiative is about. By working across state government and alongside advocates, providers and families, we’re helping more older adults and people with disabilities access the support they need to live where they want to live. We’re proud of the progress we’ve made in just one year, and we’re committed to building on it.” — Governor Maura Healey (Healey-Driscoll Administration Press Release)
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From the Editors
Welcome to the inaugural issue of The Dignity Papers. This publication is dedicated to advancing thoughtful, rigorous discussion on aging, disability, and long-term services and supports. Our goal is to promote policies that maximize independence, dignity, and community living, while creating a dedicated platform for advocates, researchers, providers, and care recipients.
Lead Essay
The Opportunity We Should Embrace: Why Community Living Deserves Our Support
By the Editors | Lead Author: James A. Lomastro
Advocates often become known for what they oppose: inadequate oversight, neglect, unnecessary institutionalization, bureaucratic barriers. Those fights matter. But advocacy also means recognizing when government moves in the right direction — and the Healey-Driscoll administration’s Community Living Initiative deserves that recognition. On June 29, the administration marked its first anniversary and released its first annual report.
For years, groups like Dignity Alliance Massachusetts have argued that long-term care policy leans too heavily on institutions and too little on helping people live in their own homes. The problem was never nursing homes; it was the absence of alternatives. The initiative, born from the Marsters v. Healey settlement, brings together housing, disability, behavioral health, Medicaid, transportation, and long-term care agencies on the premise that where someone lives is a governance question, not just a housing question. It rests on Olmstead v. L.C., the 1999 Supreme Court decision affirming disabled people’s right to services in the most integrated setting.
That right is now under federal assault. In June, the DOJ’s Office of Legal Counsel claimed the ADA and Section 504 don’t require states to serve disabled people in the community — reversing 25 years of enforcement, including under the first Trump administration. Even DOJ admits the position is “out of step” with how courts read the law; a parallel case, Texas v. Kennedy, pushes the same goal toward the Supreme Court. Massachusetts must become the backstop, making the initiative more urgent than a year ago.
Rights alone don’t move people home. Housing does. So do transportation, case management, home modifications, and behavioral health coordination. A national study found older adults with functional limitations were significantly more likely to remain in their communities in states that spent more on home- and community-based services — rebalancing that “supports residential continuity.”
The first year shows what that looks like: Community Transition Liaison teams made over 17,000 nursing-facility visits statewide, and 728 residents completed transitions through that program alone. Combined with other efforts, 391 people who’d lived in a facility over 60 days moved back to homes of their choosing. Supporting the initiative doesn’t mean abandoning our watchdog role. Discharge barriers persist, housing is scarce, guardianship delays drag on. These are increasingly implementation problems, not philosophical ones — the question is whether every agency is delivering on the governor’s commitment: transitioning at least 2,400 people out of nursing facilities over eight years. Year One’s 391 is a start, but only a fraction.
Advocacy too often measures success by whether government adopts a recommendation. Adoption is easy; implementation demands data, transparency, and partnership — criticism when systems fall short, recognition when they succeed. For decades we fought to establish rights. With Washington retreating, the next chapter must build the state capacity that lets people exercise them. The initiative should become the Commonwealth’s commitment, not just the governor’s program — measured by what matters: genuine opportunities for older adults and people with disabilities to live where they choose, with dignity and independence. That is not simply good policy. With Washington in retreat, it is Massachusetts’s obligation.
Featured Perspective
We Didn’t Need Another Study. We Needed the Will.
By James A. Lomastro, PhD | Dignity Alliance Massachusetts
A study published last week by researchers at Stanford, the University of Tokyo, and Notre Dame found that Japanese nursing homes with more direct-care staff per resident have fewer pressure ulcers. The researchers tracked more than 1,000 facilities across 2020, 2022, and 2024, controlled for resident acuity and staff turnover, and found the relationship held up “robustly across specifications.” One additional full-time-equivalent care worker was associated with roughly three fewer ulcers per facility.
A pressure ulcer is not an abstraction. It is what happens to skin held too long against a mattress by a body that cannot turn itself, tissue breaking down from the inside, sometimes healing, sometimes progressing to infection and death. The difference between those two outcomes is rarely the patient. It is usually whether someone on staff had the two or three unhurried minutes it takes to reposition a person who cannot do it alone.
This is good science. It is not new news.
Twenty-five years ago, the federal government reached the same conclusion about American nursing homes. In December 2001, the Centers for Medicare and Medicaid Services delivered a congressionally mandated report — conducted by Abt Associates — identifying a minimum staffing threshold below which residents faced measurably higher risk of harm: 4.1 hours of direct nursing care per resident per day, including 2.8 hours from certified nursing aides. Below that line, pressure ulcers, weight loss, dehydration, and infection rose sharply. Above it, they didn’t. The report was so unwelcome that CMS initially sat on it and released it only after Senate pressure — the government’s own evidence about its own residents, withheld until someone made withholding it harder than releasing it.
Since then, the finding has been replicated across the National Academies, the Government Accountability Office, and independent researchers dozens of times over. Now Japan, with a different population, a different payment system, and a different culture of care, has replicated it again.
At some point we must be honest about what these studies actually demonstrate. This one does not reveal anything counterintuitive about the human body or the economics of care. It confirms, with admirable rigor, that wounds heal faster when someone has time to turn a bedridden patient. That is not a scientific discovery. It is closer to demonstrating that water is wet, technically confirmable, but not something any of us needed a regression to believe. The remarkable thing is not that researchers keep finding the same findings. It is that an entire industry keeps insisting they haven’t, and that residents keep paying, in skin and infection and sometimes in years of life, for the argument to stay unsettled.
That insistence has a name, and it isn’t skepticism. When an entire industry consistently disavows decades of empirical research proving that higher direct-care staffing directly reduces preventable harm and improves resident survival, it is not engaging in a good-faith scientific dispute; it is practicing economically motivated denialism. By reframing a foundational clinical reality, that safe care requires adequate hands as an unrealistic “unfunded mandate” or an arbitrary administrative burden, nursing home operators shift the public debate away from quality of life and onto operational capacity. Ultimately, rejecting the clear consensus on staffing metrics functions as an institutional defense mechanism: a deliberate strategy to shield operating margins, avoid structural accountability, and excuse low-wage, high-turnover working conditions under the guise of an unavoidable workforce crisis. None of this is abstract to the people living inside it.
The United States had a chance to act on this settled science. In 2024, after decades of study, CMS finalized a modest federal staffing floor: 3.48 total nursing hours per resident day, including a registered nurse on site around the clock. The nursing home industry sued in Texas and in Iowa. Both courts vacated the rule. Congress then imposed a moratorium blocking enforcement of any federal staffing standard until 2034. In December 2025, CMS formally repealed what remained of the rule, effective this past February. So, while researchers in Tokyo were publishing yet another confirmation that staffing saves residents from preventable harm, the American government was formally walking away from the only staffing floor it had ever set for residents who are, by definition, no longer in a position to insist on one for themselves.
This is the actual story here, and it has nothing to do with methodology. Nobody credible disputes that adequate staffing prevents suffering. The dispute is entirely about who pays for it, and for a quarter century, the industry has won that argument by insisting the science wasn’t settled knowing full well that it was.
So, the honest question for policymakers, for nursing home operators, and for the rest of us who will one day need this system, is not “what does the evidence show.” We have known the answer since 2001, and Japan just spent four years and three survey waves proving it again for anyone still in doubt. The honest question is this: what will it take? If a federal report, two decades of replication, and a foreign government’s national quality-monitoring initiative aren’t enough to survive a single election cycle and a single moratorium, what threshold of evidence do we imagine would be? At some point, the demand for more proof stops being a scientific position. It becomes the strategy itself — a way of ensuring the question never has to close. Closing it would cost money. Leaving it open costs something else.
Editorial Board Position
Bernie Sanders’ Social Security Plan Misses the Seniors Who Need Relief Most
By Richard T. Moore | Co-Founder, Dignity Alliance Massachusetts
Sen. Bernie Sanders has put a powerful idea back on the national agenda: Social Security recipients need more help keeping up with the cost of living. His proposal would increase Social Security benefits by roughly $2,400 a year while asking higher-income Americans to contribute more to the system. Sanders argues that the approach could strengthen Social Security’s finances for decades while providing meaningful relief to retirees struggling to pay for housing, food, utilities, prescription drugs, and other necessities.
For millions of older Americans, that would be welcome news. But there is a group of Social Security recipients for whom a larger benefit could produce little or no additional spending money at all: older adults living in Medicaid-covered nursing homes and other institutional settings. That is because of a little-known provision of our long-term-care system called the Personal Needs Allowance, or PNA.
And it is long overdue for a raise.
Thirty dollars since 1987
Under federal Medicaid law, an institutionalized Medicaid beneficiary must generally be allowed to retain at least $30 a month for personal needs. Congress increased the federal minimum from $25 to $30 in 1987, with the increase taking effect in 1988. It has not been adjusted for inflation since.
The purchasing power of that $30 has steadily evaporated. The allowance is supposed to cover the things that make life livable but that a nursing home does not provide — or that a resident reasonably wants to purchase for themselves: clothing, toiletries, a telephone, snacks, personal-care items, gifts for grandchildren, entertainment, and other small expenses.
Meanwhile, most of the Social Security or other income of a Medicaid nursing-home resident is applied toward the cost of care after applicable deductions. That leaves residents with a stark choice: depend on family members or charities for basic personal expenses — or try to make $30, $50, $70, or some other state-determined allowance stretch through an entire month. That is not financial security. It is institutional poverty.
Massachusetts illustrates the problem
Massachusetts currently allows a MassHealth nursing-home resident to retain $72.80 a month as a personal needs allowance. The amount has remained frozen at $72.80 in the long-term-care income standards for 2024, 2025, and 2026. That is more than twice the federal minimum — but it is still a fixed dollar amount. And fixed dollar amounts are the problem.
Tie the PNA to the COLA
There is a straightforward solution. Congress should change the federal Medicaid Personal Needs Allowance from a fixed dollar minimum to an amount that is automatically adjusted each year according to the Social Security cost-of-living adjustment. If Social Security benefits rise by 3 percent, the PNA should rise by 3 percent.
Dignity should not depend on where you live. Older adults do not lose their right to autonomy simply because they need long-term care. It is time to index the Personal Needs Allowance to the cost of living, just as we do Social Security.
By the Numbers
36,900 Annual Unduplicated Enrollment in MA Home- and Community-Based Services (HCBS) Waivers
- Key Context: This figure represents annual, unduplicated enrollment (rounded to the nearest 100 based on KFF analysis of preliminary CMS data).
- Growth Trend: Enrollment increased by 1.7% from approximately 36,300 in 2022, and reflects an 8.8% growth from 2019 (33,900).
- System Scope: Waiver participants represent one segment of the roughly 116,700 total Medicaid beneficiaries receiving home-care/HCBS services in Massachusetts across 10 active waivers.
Legislative Watch
Older Americans Act (OAA) Reauthorization Act
The Older Americans Act is bipartisan federal legislation to renew and modernize the funding framework for core elder services, including Area Agencies on Aging (AAAs), Meals on Wheels, caregiver support, and the Long-Term Care Ombudsman Program.
- Passed Senate – S. 4776 passed unanimously in late 2024 but was stripped from the omnibus spending package.
- Bipartisan Reintroduction – Active Bill (S. 2120) – Reintroduced with leadership from Senate Aging and HELP Committees.
- Current Action – Pending Action – Advocates (USAging, AARP, LeadingAge) actively pushing for swift passage and full appropriations.
Sue: The following table makes no sense to me. It needs to be re-written either in a list or as a sequence of sentences, but it can’t be a table. I’m leaving this year since i probably muddled it… I just do not get what information it’s trying to show… It would benefit from dates for one thing.
| Milestone | Legislative Status | Details |
| Initial Senate Passage | Passed Senate | S. 4776 passed unanimously in late 2024 but was stripped from the omnibus spending package. |
| Bipartisan Reintroduction | Active Bill (S. 2120) | Reintroduced with leadership from Senate Aging and HELP Committees. |
| Current Action | Pending Action | Advocates (USAging, AARP, LeadingAge) actively pushing for swift passage and full appropriations. |