Mass. disability commission hearing spotlights data, MassHealth incentives and rehabilitation access gaps

BOSTON — The Massachusetts Commission on the Status of Persons with Disabilities brought together state officials, health-plan leaders, clinicians and advocates on a hybrid panel to discuss persistent health inequities for people with disabilities and steps several speakers said are needed to close those gaps.

The hearing, moderated by Eman Guzien Saiedi, executive director of the Massachusetts Commission on the Status of Persons with Disabilities, featured testimony on three principal topics: MassHealth’s Quality and Equity Incentive program and its push to standardize self‑reported disability data; limits on inpatient rehabilitation access driven by the federal “three‑hour” rule; and practical access barriers such as inaccessible equipment and gaps in provider training.

The Massachusetts Department of Public Health and MassHealth representatives described current programs intended to improve equity and data collection. Nasara Nicola, deputy director for Access and Inclusion in the Department of Public Health’s Office of Health Equity and Community Engagement, said DPH now treats people with disabilities as a priority population in its strategic plan and is working to disaggregate data by disability status. She cited results from a 2023 Community Health Equity Survey showing people with disabilities were up to twice as likely to struggle to pay for basic needs and about three times as likely to lack stable housing.

Eric (MassHealth deputy director), speaking for MassHealth, outlined the Quality and Equity Incentive program established under MassHealth’s demonstration waiver for 2022–2027. He described the program as a $2,000,000,000 initiative that currently incentivizes 97 participating health entities — including 57 acute hospitals, 17 accountable care organizations, two managed care organizations and about 20 community behavioral health centers — to implement 10 metrics tying quality to equity. Three measures focus on disability: (1) collecting self‑reported disability demographic data (MassHealth’s near‑term target is 80% completeness), (2) staff training in disability‑competent care, and (3) screening patients for accommodation needs and documenting those needs.

Eric said early reports showed growth in hospital reporting of disability data (an increase in hospitals reporting collection from 31 to 48 in an early reporting period) and described changes organizations made to workflows, electronic health records and staff training to meet the measures.

Clinicians and advocates urged broader reforms. Craig Andrade, associate dean for practice and associate professor at Boston University School of Public Health and member of the Health Equity Compact, praised recent legislative language added to an omnibus ‘‘Act to Advance Health Equity’’ that requires disaggregated disability metrics and urged an equity‑first approach to policy and system design. "If we make policies and build systems and structures centered, for example, to serve a Black, disabled, transgender woman, we have made a curve‑cut world in which everyone wins," Andrade said.

Several speakers described concrete access barriers experienced in clinical settings. Heather Watkins, a disability advocate, recounted difficulties obtaining accessible exam tables, scales and mammography equipment, and cited the roughly $3,500 monthly cost of a noninvasive ventilator she uses. Maura Sullivan, CEO of The Arc of Massachusetts, described Operation House Call, a program that brings medical students into the homes of people with intellectual and developmental disabilities to reduce bias and improve future care; the legislature enacted a law supporting that program in 2023.

Testimony on traumatic brain injury (TBI) highlighted a separate but related equity problem. Dr. Joseph Giacino of Spalding Rehabilitation Network and Harvard Medical School summarized research and clinical experience showing that TBI is often a lifelong chronic condition, that U.S. post‑acute systems under‑serve those with severe TBI, and that payer policies tied to the so‑called three‑hour rule (expecting active participation in about three hours per day of therapies) restrict access to specialized inpatient rehabilitation for people who cannot meet that threshold. Giacino said fewer than 15% of people with moderate to severe TBI receive inpatient rehabilitation and described a resulting increase in mortality, long‑term disability and higher downstream costs. He and colleagues are pursuing policy and advocacy strategies — including a proposed TBI task force — to seek changes to the rule; Giacino cautioned that amendment through federal rulemaking is limited and legislative change may be required.

Speakers also emphasized social determinants of health. Keith Jones, a disability rights advocate and CEO of Soul Tech and Experiences LLC, framed disparities as the product of policy choices and structural racism and ableism, arguing that decisions about who is “worthy” of high‑quality care have driven unequal outcomes. "Who is worthy of healthcare?" Jones asked during his remarks, urging attention to how budgets and policy choices shape access.

The panel identified several crosscutting strategies: forcing routine collection and use of self‑reported disability data to identify disparities; scaling disability‑competent training for patient‑facing staff; screening and documenting accommodation needs at points of care; strengthening community‑based supports and care coordination; and revising payment and coverage rules that limit access to appropriate levels of rehabilitation.

No formal votes or policy decisions were taken at the hearing; the session was a forum for testimony and discussion. Speakers repeatedly called for multi‑stakeholder collaboration — including state agencies, health plans, hospitals, disability advocates and federal partners — to translate the evidence and pilot work into broader practice and durable policy changes.

About the hearing Speakers represented state public health and MassHealth, health plans, rehabilitation medicine, disability nonprofits and advocacy organizations. Presenters repeatedly asked for better data, clearer operational standards for accommodations, training for clinicians early in their careers and reforms to payer rules that effectively bar many people with severe disabilities from inpatient rehabilitation. The Commission said it would follow up with participants and invited public comment by email.