Equity is being discussed a lot these days.
Justin Dart, called by many the father of the ADA (Americans With Disabilities Act), said in 1990, “We must invest in a continuum of new and strengthened programs to liberate people with disabilities from dependency, and empower them to be equal and productive participants in the mainstream.”
The problem with Dart’s statement is that most people with disabilities do not in general have “mainstream” bodies, and therefore their health-care needs are often unique.
That is why Gary Arnold, program director at the Progress Center for Independent Living (PCIL) on Madison Street, is exhorting the staff and clients at PCIL to participate in a National Institutes of Health (NIH) program called All of Us.
Last week Arnold sent out an email in which he quotes the American Association on Health and Disability (AAHD):
“Historically, people with disabilities have been excluded and ignored from research studies. That ends NOW because of the All of Us Research Program!
“For the first time, people with disabilities are being encouraged to participate and are being asked to enroll in a study that can directly impact how health care is received in the future.”
The NIH website acknowledges and a promises: “Medical research hasn’t always seen you. We’re changing that.”
NIH says they are seeking one million people throughout the U.S. to participate in a study that may last up to 10 years. “At the moment, health care is often one-size-fits-all. But imagine a future where your health care is tailored to you. We want to make that future possible. How? By creating a resource that allows researchers to conduct thousands of studies on health and disease.”
Arnold gave one example of how people with disabilities are often not treated equitably. “Weight,” he said, “is a basic statistic that is taken from every patient at nearly every visit. The data is taken because it is important. Yet sometimes for people with disabilities the data is left out because the doctor’s office does not have the equipment a person with a disability may need to get on the scale.”
Another example: “My old boss at Access Living studied to be a nurse. In her experience, she noticed from the charts of people with disabilities compared to the charts of non-disabled people that a lot of information from disabled people was missing. It was missing because either they weren’t asked the same questions or because there were access barriers.”
AAHD added, “People with disabilities know all too well that health status isn’t just dependent on a medical diagnosis. The one-size-fits-all method is not effective, as each person is unique and requires individualized care and treatment. There are many physical and environmental barriers that are unique to the disability community, and the presence of secondary conditions and health disparities is often overlooked by health-care providers.”
NIH is gathering data in the study to move the medical profession toward what the literature calls “precision” or “personalized” medicine. Participants answer health surveys, donate DNA samples and share their electronic health records.
The Progress Center, Arnold explained, is a sub-awardee of the AAHD as part of the Community and Provider Gateway Initiative (CPGI), which is funded by NIH to lead grassroots engagement efforts. AAHD reached out to Progress Center.
PCIL is encouraging participation in All of Us by sharing information each week over social media and is integrating brief presentations about the program into standing progress center meetings and support groups. Each Monday at 3 p.m., for example, they have a Community Check In.
If you are interested in participating in the research program, enroll at
To talk to Gary Arnold, call 708-209-1500, extension 14.