How data collection is playing a key role in advancing health equity

A new push to gather health care data about people with disabilities is spotlighting a disparity in health care equity that is often overlooked by the medical community. 
During the first year of the pandemic, the state of Michigan’s coronavirus dashboard provided a wealth of information about outbreaks and vaccination rates by race, gender and age.

But one glaring omission was whether those receiving the vaccination had a disability.

That was problematic on many levels, says Kristen Milefchik, vaccine advocate for Disability Rights Michigan. 

“You have these health equity strategies that are developed for all people of marginalized demographics,” Milefchik says. “Well, there are parts of those marginalized demographics who have disabilities that are being overlooked. So if you have a health equity strategy to help people in a certain way, but you're not counting disability challenges, then that strategy might not be successful. 

“When we're measuring health trends, and impacts, we have to look at people with disability as part of the whole picture.” 

Data needed to create equity

Advancing health equity is impossible without data. Data informs strategies to address inequities in health care delivery and the socioeconomic conditions that influence health outcomes. 

However, disability data is rarely collected unless it is for research solely focused on disability. Data on disabilities wasn’t collected on Michigan’s COVID dashboard, even though people with disabilities were disproportionately affected by the pandemic. 

That’s why DRM has worked with partners to gather data about those with disabilities and their access to health care as they expanded access to the COVID vaccinations through in-home visits and clinics across the state.  Hundreds of Michigan residents now are being counted in data about people with disabilities who have received COVID-19 vaccinations and boosters.

The Zerod family: Micha, Marilyn, Andy and Rick

One family who is part of this new collection of data at the intersection of health care and COVID vaccinations is the Zerod family in Chelsea. Rick and Marilyn Zerod, who are both retired, have full days caring for their adult children, Andy and Micha, who have significant disabilities. 

“We're kind of running a small group home,” says Rick. “There's always something we need to do, whether picking up prescriptions or doctor’s appointments. We're very thankful for anything that can kind of help us and that works.”

The couple was relieved when they learned last year that DRM would provide in-home vaccinations and booster shots for COVID-19 for the entire family – and their home health care worker – after the Washtenaw County Health Department stopped the service because of funding issues. 

“It has made a real difference for us. It was truly a blessing,” says Marilyn, who herself has mobility issues after hip and knee replacements and ankle replacement surgery that needs to be redone for a third time. 

Effectively, three of the four members of the Zerod family have disabilities. Andy, 33, is autistic with significant developmental delays and functions at a low cognitive level. The couple’s daughter, Micaha, has Asperger's syndrome.

Hoping for greater awareness

Rick and Marilyn worry that Andy is particularly vulnerable to the disease that the Center for Disease Control says has killed more than 1.1 million people because he isn’t able to take precautions to protect himself and is unable to wear a mask. 

The couple believe the data collection will show they aren’t alone, and that other parents in their retirement years are taking care of their adult children with disabilities.

“It's hard on these folks that have these kids”, adding the limited availability of home health care workers for additional help,” says Rick. He hopes the data collection will raise awareness about the need for extra assistance for those with disabilities. 

Stats showing how many people with disabilities received COVID-19 vaccinations in Michigan through DocGo.

One of the challenges of tracking disability is determining a definition, says Milefchik.

“There are so many different types of disability and definitions. Also, depending on the deciding organization, it could be a matter of what makes you eligible for their programs and services,” says Milefchik. “There's no standard definition, and that complicates things.”

But she says that collecting some data is better than nothing. Instead of people with disabilities being an afterthought, having that data allows better strategies that include them.

As part of its data gathering, DRM is looking at what percentage of people who have been vaccinated have disabilities. 

DRM gave out 2,793 COVID-19 vaccinations and 1,431 flu shots in 2023. Of the 1,636 patients who completed the disability questionnaire, 684 self-identified as having a disability. The breakdown was:
  • Self-care 14% 
  • Mobility 19% 
  • Cognition 11% 
  • Hearing 12% 
  • Independent living 18% 
  • Vision 26%
“When we first started, no health care providers had in their database the ability to collect this data, and that's a problem because the electronic medical record of people does not typically contain that information,” Milefchik says. 

Asking the right questions

DRM had used the same questions about disability used by the U.S. Census Bureau’s American Community Survey (ACS), which asks the person if they consider themselves to have a disability. Overall, the ACS attempts to capture six aspects of disability: (hearing, vision, cognitive, ambulatory, self-care, and independent living), which can be used together to create an overall disability measure, or independently to identify populations with specific disability types.

“This is why we used the same six questions the ACS does to capture information about disability, plus one additional question 'Do you have a disability,'" says Milefchik. "We added this because the first question is a catch-all for people who may not quite fit into any of the ACS categories, but do identify as having a disability. For instance, not all people who are neurodivergent or on the autism spectrum see themselves as having 'difficulty' in any of the areas covered by the ACS questions, but may still identify as having a disability."

The Census Bureau, in collaboration with other federal agencies, also conducts the Household Pulse Survey. This survey, which began during the pandemic, was designed to quickly gather data to measure how emergent issues are impacting U.S. households. 

In the first year, the 20-minute online survey didn’t ask about disabilities. In the second year, when it did ask about disabilities, the responses showed that people with disabilities had a much higher likelihood of food insecurity and of being unable to get to doctor's appointments, Milefchik says. 

“It’s just valuable information to find, even if they're not directly looking at people with disabilities as part of the picture,” Milefchik says. 

DRM is part of Michigan Vaccination Partners, which includes the Autism Alliance of Michigan and the Michigan Developmental Disabilities Institute. Each entity received COVID-19 Supplement IV grants to ensure greater equity and access to vaccinations for people disproportionately impacted by COVID-19. Michigan Vaccination Partners is also working to collect data about the impact of COVID-19 vaccinations and boosters on the disability community. 

“One of the things that was really striking during the pandemic was that you could go on the COVID-19 dashboard and you could look up vaccinations rates by race and gender, but there was no information about disability,” Milefchik says. 

Make voices heard

Jeanine Rowe, a disability advocate who lives in Niles, believes that collecting that data is the first step to getting equitable health care. 

"At least our voices are being heard, the health care system is not very disability friendly for any type of health care," says Rowe, who points to her own obstacles of getting into a dentist's office for a basic exam.

“It took us six dentists to find one to let me stay in my chair," says Rowe, who has cerebral palsy and uses a power chair with special support tailored to her body. "Luckily, I found a dentist with a special room for people in wheelchairs.”

Jeanine Rowe at an event supporting accessible health care.

"Many dentists don’t have space for a power chair anywhere through their office. Accessibility is a huge issue in getting equitable health care.”

During a recent stay at a rehabilitation hospital, she remembers a worker handing over Medicaid paperwork to her mother instead of her. She felt invisible during the encounter, which says happens all too often. 

It's just a lack of expectations that people with a disability can actually make their own choices. We will ask for assistance when we need it just like anyone else," says Rowe, 22, who has handled her own affairs since she turned 18.

Rowe sees data collection as crucial to raising awareness about people with disabilities. She believes what’s gathered needs to be widely disseminated.

She focuses her advocacy on drawing attention to the issues faced by people with intellectual developmental disabilities, or IDD. Rowe is studying online at the University of Missouri, where she's earning a certificate as an ADA coordinator. 

“Every disability is different," explains Rowe. "Three people can have the same diagnosis of the same disability but it affects them differently. The medical community should say to the person, what do you need? How do you want to do this exam? Sometimes communication isn’t there, and it's really annoying.”

Photos courtesy of Kristen Milefchik, Rick Zerod and Jeanine Rowe.

Shandra Martinez is the lead writer for the Disability Inclusion series. She’s also the managing editor of The Lakeshore and Rapid Growth.

Disability Inclusion is a series exploring the state of Michigan’s growing disability community. It is made possible through a partnership with Disability Rights Michigan.
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