Health Care Advocacy

Everybody – including adults and children with disabilities – should receive the services and health care that they need. We work to prevent segregation and discrimination in health care.

CPR advocates for equal access to quality healthcare for people with disabilities so that they can live full and healthy lives in their communities.

COVID-19 Advocacy

The pandemic caused by COVID-19, is a threat to people across the country, but particularly to people with disabilities. People with disabilities, including those from communities of color, are far more likely to experience underlying or co-morbid conditions made worse by limited access to quality health care.  As noted by the Centers for Disease Control, people with certain disabilities also are more likely to develop serious and life-threatening cases of COVID-19 than the population at large.  Finally, people with disabilities and older adults face a unique set of risks unrelated to the virus itself, including:

  • The risk of discrimination in access to treatment;
  • Difficulties in maintaining the home and community-based services (HCBS) if they experience an extended hospitalization;
  • Well-documented biases of physicians in treating people with disabilities;
  • The inability to isolate because of their reliance on nursing, personal care or home health staff; 
  • Placement in an institutional or congregate setting that dramatically increases their risk of repeated exposure to the virus; and 
  • Higher incidence of mortality among nursing facility residents during COVID.

CPR joined with national coalition partners to assist local disability organizations in more than 20 states to revise Crisis Standards of Care that determine priority for emergency treatment.  Locally, it organized a diverse coalition of disability, civil rights, and racial justice organizations to press for reforms to Massachusetts’ Crisis Standards, vaccination protocols, COVID precaution protocols, and hospital accommodation policies. Please visit our COVID-19 page to learn more.

Since the end of the Public Health Emergency in Massachusetts, CPR has continued to advocate for reasonable modifications in health care with the Department of Public Health, the Massachusetts Hospital Association, and in conjunction with other disability and health equity groups.  See CPR’s Q&A on Reasonable Accommodations Under the ADA in Public Health Settings.

Protecting Medicaid

Access to healthcare is critical for people with disabilities.

People with disabilities rely on the healthcare system for medical services – including specialized services like nursing care, physical and occupational therapy, and durable medical equipment.

They also rely on the healthcare system for the supports and services to help them live, work, and participate in the community.  They need home and community-based services (HCBS) that include residential services, employment supports, respite, personal care services, habilitative and rehabilitative services, and mental health services.

More than 10 million people with disabilities rely on Medicaid to access these important healthcare services.  Nearly half a million more people with disabilities are on waitlists for HCBS services.

Millions of low-income children with disabilities also depend on Medicaid for the services necessary to treatment their medical and behavioral health conditions.

CPR promotes access to integrated services and programs funded by Medicaid and fights against legislative and federal agency proposals that would cut Medicaid funding, narrow Medicaid eligibility, or remove critical protections for Medicaid participants.  

Protecting the Affordable Care Act

The Affordable Care Act (ACA), which expanded health insurance, provides important benefits and protections to people with disabilities.  Key provisions include:

  • Non-discrimination against pre-existing conditions (including disabilities);
  • Ban on lifetime or annual caps; and
  • Allowing states the option to expand Medicaid coverage to additional populations (including people with disabilities who were not eligible for the traditional Medicaid program).

CPR opposes any repeal or modification of the Affordable Care Act that is not replaced with coverage that is at least as affordable and comprehensive as the original legislation.  Read here for more information about the importance of the ACA for people with disabilities.

Health Care Reform

CPR is a leader in the national conversation about healthcare reform, to ensure that the services that people with disabilities need – long-term services and supports (LTSS), particularly Home and Community Based Services (HCBS) – are included in healthcare proposals being considered.  Read the Principles for Inclusion of Long Term Service and Supports (LTSS) in Universal Health Care that CPR helped develop with the Consortium for Constituents with Disabilities (CCD).

A critical aspect of health care reform is holding health care entities – including recipients of federal funding – accountable under laws that prohibit discrimination on the basis of disability.  To this end, CPR helped to coordinate national comments on the Department of Health and Human Services’ 2023 notice of proposed rule-making interpreting Section 504 of the Rehabilitation Act of 1973.  These comments, submitted under the auspices of CCD, include new provisions prohibiting discrimination against people with disabilities in medical treatment.  

Medicaid Home and Community-Based Settings Rule

CPR is a critical resource for advocates throughout the country, as well as state agencies, regarding implementation of the Medicaid Home and Community-Based Services (HCBS) Settings Rules.  In January 2014, the federal government issued rules that for the first time define what is required for a setting to be considered community-based.  These rules will ensure that people who are getting HCBS have access to the benefits of community living, including being integrated in and having access to the broader community, making choices about their daily lives, and working in real jobs at fair pay.  CPR led a coalition of national disability organizations who worked to ensure implementation of the HCBS settings rules so that people with disabilities can live, work, receive services, and fully engage in community life.  Learn more about the HCBS settings rules, the HCBS Advocacy Coalition, and states’ progress on transition plans. Additional information can be found on the government’s website.

Long-Term Care Reform

CPR advocates on a national and local level for reforms to long-term care systems, and particularly to nursing facilities.  Nursing facilities are segregated settings which were disproportionately impacted by the pandemic, resulting in the deaths of tens of thousands of people with disabilities.  Nursing facilities in under-resourced communities provide lower quality care, which often results in the abuse and neglect of people from communities of color.

CPR is a leading member of the Dignity Alliance, a statewide coalition to transform the long-term care system in Massachusetts.  The Alliance includes more than 80 disability rights, consumer, family, professional, service provider, advocacy, and legal services organizations.  It promotes community alternatives to nursing facilities, the expansion of nursing facility residents’ rights, and improvements in nursing facility care.