Disability Rights Michigan (DRM) received COVID-19 Supplement IV grants to ensure greater equity and access to vaccinations for people disproportionately impacted by COVID-19, with a focus on individuals with disabilities, their family members, and caregivers.
This grant led to DRM project work that identified inequities in the COVID-19 public health response for individuals with disabilities in our state. These inequities reflect broader healthcare access and social determinants of health disparities for the disability community. This report gives the background and context of these disparities, lessons learned from DRM’s vaccination grant project work, and recommendations for improving health equity for Michigan’s disability community.

Understanding Equity for People with Disabilities

Learn about the background of DRM’s health equity report by clicking into each subject below.

Impact of the Disability Civil Rights Movements

Disability-related disparities in healthcare are nothing new. The Disability Civil Rights Movements that gained momentum in the early 1970s paved the way for the passage of landmark civil rights legislation for those with disabilities. For the first time in U.S. history, the signing of regulations contained in Section 504 of the Rehabilitation Act gave the disability community broader access to public services, including healthcare, by making it illegal for any program or entity that receives federal funding to discriminate or deny access because of disability. These rights and protections expanded further with the passage of the Americans with Disabilities Act (ADA) in 1990 and the Affordable Care Act (ACA) in 2010.

Though these rights for individuals with disabilities are critical, significant obstacles remain to ensure equitable access to healthcare for the disability community. These include: a lack of attention to this unique demographic in social determinants of health strategies; diversity, equity, and inclusion (DEI) efforts and curricula; healthcare data collection practices; the lack of an adequate community-based direct support workforce; and continued reliance on forced institutional living status.

To address these inequities, there must also be a shift in how we think of disability. Disability activists around the world have moved away from the medical model of disability, which seeks to fix or get rid of a condition that is medically diagnosed as a disability. This model does not adequately address the limiting factors that impact individuals with disabilities’ functioning in a society that was not designed with them in mind. Instead, disability activists embrace the social model of disability, which seeks to change the physical and social environment to be more inclusive and welcoming of all people, including those with disabilities.

Download Health Equity Report PDF

Understanding Social Determinants of Health (SDOH)

Social determinants of health (SDOH) are non-medical factors that influence health outcomes. Housing stability, food security, access to transportation, and racial discrimination in healthcare delivery are common SDOH focus areas. Across the board, the lack of disability data and the impact of disability on SDOH lead to strategies that are insufficient to address the unmet needs of this demographic and other intersectional identity groups that are most vulnerable to healthcare inequities.

  • Housing Stability and Disability
  • Food Security and Disability
  • Access to Transportation and Disability
  • Racial Discrimination and Disability

The Importance of Disability Data

Advancing health equity is impossible without data. Data informs strategies to address inequities in healthcare delivery and the socioeconomic conditions that influence health outcomes. However, disability data is rarely collected unless it is for research solely focused on disability itself.
As described by Swenor (2022), the COVID-19 public health response is the perfect example of how the lack of disability data results in data gaps that erase inequities and social justice for the disability community. For example, in April 2020, the U.S. Census Household Pulse Survey was launched to assess the impact of the pandemic on US households. Data was disseminated biweekly to inform federal and state response and recovery planning. However, it did not include standard questions about disability until April 2021, during the second year of the pandemic (Swenor, 2022; U.S. Census Bureau, 2020). Within the first weeks that disability questions were asked in the survey (April 14 to April 26, 2021), data emerged that showed people with disabilities were at a disproportionate risk of food insecurity and experienced a lack of access to healthcare during COVID-19 (Assi et al., 2022).

Despite requirements of Section 4302 of the Affordable Care Act to include the capability for electronic health records (EHRs) to contain disability status, significant gaps in disability data in EHRs also prevented tracking of COVID-19 testing, vaccination, and mortality among people with disabilities during the pandemic (Swenor, 2022; Kaundinya, 2022). Much of the data that was available have come from people with disabilities living in congregate care settings, like nursing homes, or are limited to people with intellectual and developmental disabilities (Swenor, 2022). One of the most regularly cited statistics regarding COVID-19 and disability comes from a study by Jefferson Health which found that people with intellectual disabilities are six times more likely to die of COVID-19 infection (Gleason et al., 2021). However, one of the commonly misunderstood aspects of disability is that disability does not, inherently, affect a person’s life expectancy. Disability data gaps remove opportunities for evidence-based policies and the reach of mitigating efforts to prevent unnecessary illness and death for people with disabilities (Swenor, 2022).

Swenor (2022) further explained why disability data is critical in all spheres of study, even those outside of disability-specific issues. Limiting disability data collection to disability-specific issues creates barriers to using data sets across varying systems, including healthcare, food access, housing, transportation, education, employment, voting, etc. Therefore, disability data must become a core dimension of all demographic data. Broad disability data collection is the key to finding the root causes of health inequity for people with disabilities and other intersecting identities and developing strategies to end it.

Download Health Equity Report PDF

The Crisis of Direct Care Workforce Capacity

Workforce capacity is critical in health equity and the healthcare system’s response to public health emergencies. While hospital workforce shortages were a focal point of the COVID-19 public health emergency, long-standing direct-care workforce shortages also reached crisis levels during the pandemic.

The Administration for Community Living reported that millions of people who depend on home and community-based services to maintain their independence experienced service disruptions or were forced to move into nursing homes or other institutions, compromising their health and safety during the pandemic (2022).
This crisis did not end with the end of the COVID-19 public health emergency. Recent reports show that more than three-quarters of direct care service providers are not accepting new clients, and more than half have cut services because of the direct care workforce shortage. In addition, high direct care staff turnover averages nearly 44 percent across states (National Core Indicators Intellectual and Developmental Disabilities [NCI IDD], 2022).

The direct care workforce crisis is not only a public health concern for individuals with disabilities. The Administration for Community Living laid out key issues fueling the crisis, including poor wages and lack of benefits, including health insurance, for direct care workers themselves (2022). Therefore, health equity strategies must include initiatives to improve the recruitment and retention of direct care workers. The health of millions of people with disabilities and those who provide their direct support services depend on it.

Institutional Bias

Other than hospitals, the devastation of the COVID-19 pandemic was most pronounced in nursing homes and long-term care facilities that house older adults and people with disabilities that are prone to the harshest consequences of COVID-19 infection (New York Times, 2020). As concluded in a cohort study by Bartley et al. (2018), even in non-emergency times, there are significant health benefits to community-dwelling versus living in congregate care settings. Unfortunately, though most prefer to live in their own homes, it can be difficult for people who have long-term care needs to maintain an adequate level of support to do so. Historical institutional biases in the Medicaid program and in patterns of healthcare spending in Michigan contribute to the lack of community housing choices for members of the disability community.

Download Health Equity Report PDF

DRM Vaccination Program

The Mission

From 2021 to 2023, DRM formed the Vaccine Advocacy Team (VAT) for COVID-19 work. In order to provide the best care, DRM contracted with one of the providers, DocGo, directly to broaden vaccination and community engagement efforts. This included community centers, homeless shelters, public housing settings, and permanent supported housing. DRM also worked with a parallel rollout of mobile vaccine services provided by the Wayne Health Mobile Unit, working with Wayne State University’s Developmental Disabilities Institute to collaborate on vaccine events such as the Special Olympics in Detroit.

The Impact

4,208 individuals received COVID-19 vaccinations from the beginning of the project through June 2023.

  • 2,846 vaccinations administered directly by DRM’s contract clinical provider (68%)

  • 738 vaccinations indirectly facilitated by DRM staff at events with other providers (17%)

  • 624 vaccinations referred to mobile clinics (15%)


Communication Efforts

VAT staff crafted messaging that was specifically designed to reach everyone, even those who typically experience communication barriers or have limited access to the internet. Special care was taken to ensure all communications met disability accessibility standards. Due to DRM messaging, over 63,000 people received information about vaccines, DRM, and its vaccination activities by the end of June 2023.

Print and electronic newsletters
Mailed information packets
Social media announcements
Website landing page
Community events
Read More about Community Engagement

Community Engagement

Since the early stages of DRM VAT project work, VAT staff has established numerous partnership agreements with outside groups to share DRM Vaccine Advocacy information and/or host community vaccination clinics. Community engagement and partnerships are the bedrock of DRM’s vaccine advocacy success. Even organizations and groups without a specific focus on disability had valuable insight into the needs of their communities. These needs inherently intersect with those of people with disabilities. DRM VAT staff took a backseat in planning vaccine outreach as much as possible, allowing community leaders to lead, while DRM facilitated mobile health services and offered support.

Advocates can learn important lessons from DRM vaccine work. Widening the net of engagement to community leaders and marginalized groups beyond the disability community, while keeping a focus on accessibility and inclusion for those who have disabilities, maximizes impact. Health equity strategies that target only those who have medically defined disabilities may miss many with complex, intersectional identities and needs. To improve access to healthcare and healthy living opportunities, disability must be integrated, not singled out.

Health Equity Clinic Stories

Read about the stories of individuals attending DRM vaccination events who spoke volumes about the lack of health equity in the communities served. Here are some examples taken from one event at a south-central Michigan homeless shelter:

One person had hypertension and needed monitoring and medication as well as dental care. They had insurance but missed several appointments with doctor due to transportation scheduled by insurance company falling through/not showing up. They were also having trouble getting medication. They were thankful for the monthly vaccine clinics provided at the shelter, saying if COVID clinic was not held at the shelter they would not have gotten vaccinated for COVID and would go to the ER for other care
Another person had recently been released from the hospital due to pneumonia. They had experienced ongoing cough and difficulty with climbing stairs since having COVID. Person is diagnosed with PTSD and seizures. The person needed surgery, but it could not be scheduled due to nowhere to discharge to for recovery. Person needed dental care and vision checked. Client had insurance but could not get health care due to transportation issues.
One person needed neck surgery. They need to go to a specialist out of county because no one in their community has the necessary specialization. Person had not been able to secure transportation through insurance. Person had nowhere to be able to discharge/recover if surgery was scheduled
Another person with prostate cancer had insurance and a primary care physician but had not been to the doctor in over two years. They also needed vision and dental care. They reported difficulty in obtaining transportation for health care appointments.
A person with COPD, heart palpitations, difficulty climbing stairs, difficulty breathing when laying down, cough that won’t go away (smoker’s cough), and arthritis reported not having a wellness check in a very long time. They had been receiving COVID and flu vaccine at The Shelter vaccine clinics. They had insurance coverage. They also needed vision testing and dental care.
A person with herniated discs and osteoarthritis reported being denied Medicaid coverage despite receiving Supplemental Security Income (SSI). They recently returned to Michigan from Texas. They showed advocate a denial letter from Michigan Department of Health and Human Services. The letter indicated they were not eligible for Medicaid because they did not meet the need (marked box said they were not a parent of a child under 18, not pregnant, and not disabled). They are unable to go to the doctor for medical care.
A person with mental health needs reported it had been more than five years since having a wellness checkup. They reported need for mental health care, physical therapy, vision, and dental.
A person with mobility issues had insurance but reported main issue for not receiving health care was transportation. They had several prescribed medications that needed to be filled and taken. They reported they needed vision care and need for dentures.
A person with PTSD, anxiety and depression reported not having a wellness checkup for over one year. They did not currently have insurance or a primary care provider

Home-Based Vaccination Stories

DRM also facilitated over 350 home-based vaccinations through June 2023. Most of these individuals were referred to DRM by their local health departments, Area Agencies on Aging, home care providers, hospice agencies, or Disability Networks. Some of the recipients included:

A 73-year-old man with cerebral palsy, his 75-year-old caregiver with a heart condition, and the caregiver’s 70-year-old wife with diabetes.
A 77-year-old woman with lymphodemia, fibromyalgia, and arthritis who could not get out of her public housing unit.
An 81-year-old woman with end stage COPD and her 60-year-old companion with arthritis.
A 90-year-old man with orthopedic disabilities and his 86-year-old wife with autoimmune disorder.
A 79-year-old stroke survivor who could not leave her home.
Three family members – a 76-year-old woman with cognitive disabilities, her 76-year-old husband with mental illness and hearing loss, and their 57-year-old caregiver with multiple sclerosis.
An 82-year-old woman with mobility limitations, her 41-year-old daughter, and the daughter’s 4 children, 2 with disabilities. The caregiver managed a public housing complex where DRM had provided a community clinic.

First Project Survey

In June 2022, DRM released a survey report based on 155 completed vaccine survey responses with recommendations and implications for future healthcare. Recommendations were based on the following survey-identified barriers to vaccination:

Lack of guardian consent
Vaccine registration issues
Vaccination site not sensory-friendly/over-stimulating
Vaccine availability (early in the vaccination rollout)
Transportation/Travel issues
Lack of adequate personal care supports
Lack of in-home availability of vaccines/boosters
Communication barriers at the vaccination site
Lack of physical accommodations at the vaccination site

Data Mapping

DRM VAT staff facilitated the creation of heat maps overlaying community and homebound COVID-19 and flu shots facilitated by the DRM VAT team with vaccination uptake and disability prevalence. VAT staff used these maps to measure progress in targeted regions of the state and evaluate future vaccine outreach targets. Staff also shared the heat maps with grant and community partners to measure collective impact and evaluate future collaborative work.


Focus Groups

In August 2023, DRM VAT staff facilitated two focus group sessions to gauge the impact of disability within the context of the health equity landscape. Eligibility to participate was based on the following factors:

  • Must reside in Michigan
  • Must fit into at least one of the following categories:
    • Have a disability.
    • Be a relative of or have a close personal relationship with a person or people with disabilities.
    • Work directly for or have a professional relationship with a person or people with disabilities.

Insight 1

Social Determinants of Health

The most frequently cited theme in both focus group discussions was social determinants of health barriers; Specifically, access to transportation and affordable, accessible housing were cited as having a significant impact on participants’ health. Focus group discussions demonstrated how these social determinants of health barriers, and others, overlap and intersect with each other, creating complex, structural issues that can only be addressed through systemic advocacy and change.

Participant Quote

The social economic factors play a huge role because of the extra expenses tied to your disability. And then finding adequate accessible, let alone affordable, housing.
And if you're not in a position to purchase a house and have it modified [it] is a problem. [...] I'm going to say housing plays a huge role [in health]. Having a sense of security, being in a safe neighborhood, being able to get out, have a walkable, or in my case, rollable community, being able to utilize public transportation, all of that does not just play into health and the social determinants of health, but it’s a huge stressor, because if you don’t feel comfortable and safe, it can affect your mental health, and if you have, like I do, a neuromuscular disorder. Anything that affects my mental or emotional health affects my ability to physically move around and communicate, so it’s a big issue.

Insight 2

Telehealth and In-Home Medical Visits

Telehealth was the most cited exception to access to healthcare and the associated transportation challenges. Most participants preferred telehealth options when the type of healthcare sought did not require an in-person examination by a medical professional.

Participant Quote

It was helpful and there's a lot of humor that can come into that too, because you spend a lot of time saying, “Why am I wasting all the gas money coming to see you, you know, when we can just do it this way?”
So yeah, it was very helpful to be able to use the phone because there are times when I couldn’t do transport anyway, but I think during that time when I was using telehealth, I mean obviously it was during COVID, but I think it's something that they might want to consider using [long term]. I mean, I found it a lot easier to use telehealth in that instance, because it's a lot easier to just say, you know, if I needed a visit, “Hey, can I get a visit now?” instead of having to wait a little bit or come to the office to see you or whatever.

Insight 3

Lack of Accommodations in Healthcare Settings

In March 2021, DRM collaborated with the State of Michigan and 11 other advocacy organizations to create a set of guidelines for testing and vaccination accessibility. The guidelines, “Accessibility at Michigan Vaccination Sites,” included proposed protocols for accommodations, community empowerment, effective communication, cultural competency, and data. Focus group discussions revealed how the lack of accommodations in traditional healthcare settings exacerbates the difficulties with getting proper medical treatment, in a safe and comfortable environment.

Participant Quote

One ability that impacts, that affects, quality of healthcare is, some of the people I work with have developmental disabilities but they have a little more trouble communicating.
And It's hard to be in a doctor's office when they have their time commitments. What are they allowed to see you for? Maybe 15, 20 minutes? And then you have somebody who can't understand, or needs more time to express themselves, and can't always understand everything. As some of those people age, and some of them are, that I work with, are in their 30s, mid 30s and early 40s, and I think that probably, that ability to, you know, have a conversation affects their quality of health care, especially if they don't have somebody, like an advocate, going with them.

Insight 4

Lack of Access to Specialty Care and Home Supports

Whether or not participants experienced issues with transportation to get to doctor’s appointments, limited access to specialty healthcare, especially for those who are on Medicaid, was a recurring theme in focus group discussions.

Participant Quote

I think part of it though is getting into healthcare and I'm working with someone right now who went through a long process to pick out a doctor they thought they felt comfortable with at a clinic.
They thought they'd feel comfortable only to find out that this clinic is now not, is not wanting to take any new patients that are on Medicaid or might be on controlled substances. So that's gonna put a huge barrier up to that person, and it's going to make it a lot harder for them to access [healthcare]. And that's not even in one of our rural communities.

Insight 5

Bias and Attitudinal Barriers to Healthcare

DRM focus group participants experienced or witnessed discrimination and social prejudice against individuals with disabilities and other intersectional identities in healthcare and other areas linked to health outcomes.

Participant Quote

Oftentimes if I have a new doctor, that doesn’t know me, they can be very condescending. So in my opinion, that’s very disrespectful. Like, if they’re always looking for someone else to be with me to answer questions as opposed to feeling like I’m capable of answering questions myself, which I find to be disrespectful. In addition, when my son was younger, going to the physician with him was a challenge, because he has health conditions that were not able to be seen by the naked eye. As his mother, I knew when something was off base, or something was going on. And communicating that to the doctor was difficult, like they didn’t believe me. It got to the point where I had to bring my mother or my significant other just to simply say what I had just said for them to take me seriously. So that is a challenge when it comes to getting healthcare.


The findings of this report emphasize the need for significant systemic changes to advance health equity for Michigan’s disability community. The following recommendations address health equity gaps and successful interventions of the DRM Vaccination Project.

Bring health care services to people where they are through the expanded use of mobile health units
Fix public transit to increase access to health care
Include disability community when measuring health trends and impacts
Provide modest incentives to promote health care
Base advocacy assistance on proactive engagement with local communities
Work toward short- and long-term solutions to staffing shortages
Address accommodations, discrimination, institutional bias, and ableism


The COVID pandemic left an indelible mark on the disability community and their allies. "The Coronavirus pandemic has disproportionately impacted people with disabilities, not because the virus targets disability, but because long-standing shortcomings in numerous systems predictably left us vulnerable," said National Council on Disability Chairman Andrés Gallegos in October 2021 (National Council on Disability). At the same time, the response to the pandemic brought with it lessons on what happens when our support systems eliminate barriers to care and support and provide sufficient resources to combat health issues. It is our hope that these valuable insights will not be lost, both as tools for responding to future crises and as guidance for addressing longstanding institutional and cultural issues affecting people with disabilities.

Learn More About Health Equity

Download the full DRM Health Equity Report to dive deeper into the wealth of detailed information and access all the valuable sources found in our comprehensive report.

Report Sources and Endnotes

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