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More than 16,000 people with intellectual and developmental disabilities (IDD) are institutionalized in the United States, according to the Housing Information Systems Project. That’s a big drop from about 200,000 in the 1960s, but disability rights activist Rebecca Cokley says there’s still a lot of work to be done.
Cokley, who now works as a disability rights program officer at the Ford Foundation, was born with achondroplasia, a common cause of dwarfism.
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“We know that people with disabilities have a constitutional right to live in the community,” she told CBS News, pointing to the Supreme Court’s 1999 decision in Olmstead v. L.C. “The promise of making the transition of people with disabilities successful and possible into the community has never really been fulfilled.”
Her husband, Patrick Cokley, is a senior program officer at the Robert Wood Johnson Foundation. Patrick has low vision, and he and Rebecca are parents to children with disabilities.
“This runs counter to the fundamental civil and human rights that we have established as an essential part of our American identity,” he said. “Community life should be the rule, not the exception.”
A 2011 review of 36 studies found that nearly 5,000 people with IDD saw positive changes after moving from large institutions to community living.
The system also serves as a reminder that when we create structures that are separate, they are rarely equal, the Cokleys say — a notion that has roots in racism and slavery.
“This dangerous idea of patriarchy has led America down a path where certain people don’t belong in society,” Rebecca said. “There’s been a push to lock them away and forget they exist, in the name of, ‘Well, it’s better for them.'”
Discrimination against people with disabilities in healthcare still exists
“I don’t want to live in an institution,” Erin Compton, 19, who lives with her family in Illinois, told CBS News. “I feel like I’m being discriminated against.”
Not only was Erin born with Down’s syndrome, she also had heart disease and gastrointestinal problems, and when she was 10 months old, doctors tried to insert a feeding tube, a “very extreme” procedure, her mother, Diane, said.
“His view was that while she was in the facility, she would always have access to the nutrition she needed,” she told CBS News. “His view should have taken precedence over ours. [being] Be as independent as possible.”
A 2020 study published in the journal Rehabilitation Psychology explored health care professionals’ attitudes toward people with disabilities. It found that while a minority explicitly preferred people without disabilities, the majority of health care professionals implicitly preferred people without disabilities.
A 2022 study found that unfair treatment leads many people with disabilities to delay receiving medical care or not receive it at all.
Octavia Byers said arranging care for her son, TJ, who has cerebral palsy, epilepsy and chronic respiratory failure, is difficult.
This specialized care means it’s difficult to find a family doctor willing to take on TJ: In a survey published in 2022, only 41% of doctors interviewed were “very confident” in their ability to provide quality care to patients with disabilities.
The study noted, for example, that some doctors’ scales are not wheelchair accessible, so patients are told to go to supermarkets, grain elevators, livestock processing plants or zoos to be weighed, or doctors will say their offices are closed.
Such prejudiced treatment of people with disabilities is not uncommon: In a 2017 op-ed for CNN, Rebecca Cokley described her experience of an anesthesiologist rudely suggesting that she be sterilized while preparing for a C-section to give birth to her second child.
“At a time when Buck v. Bell is still the law,” she told CBS News, referring to a 1927 Supreme Court decision that upheld the constitutionality of forced sterilization and has never been explicitly overturned, “it doesn’t surprise me that the system continues to perpetuate the idea that institutions are actually a choice, when I don’t know anyone who would choose to live in an institution.”
Promoting personalized medicine
Dr Mai Pham, founder of the Exceptional Care Institute and mother of a son with autism, said more education would help change people’s outdated assumptions about the disorder.
“This is not a standalone course,” she told CBS News, “and just like diabetes, a condition like IDD creates a situation that changes how you think about every other clinical decision.”
The aim is also to create healthcare that is inclusive of people with and without disabilities through inclusive design. Although it may increase upfront costs, adapting current healthcare structures to be more inclusive will empower everyone and make the process easier for medical staff, Pham said.
Improving data collection techniques and including people with disabilities in the dialogue will help policymakers make informed decisions. Definitions may vary by federal agency, but there needs to be transparency about which definitions are used.
“How the state collects its disability count has real-life implications for people,” Pham said, noting that confusion could allow health care providers to delay or reject proposed changes.
Healthcare professionals and providers shouldn’t be afraid of change — the rapid adoption of telehealth during the pandemic is proof of that, Pham told CBS News.
“They took days, weeks, to put that in place,” she said, “and I’m not going to be too suspicious of the concerns about moving to a more comprehensively designed health care system.”
Advocates hope that educating others, better statistics and putting in place a more inclusive system will help people with disabilities in the long run.
But they also say Americans need to fundamentally shift the debate and put people at the center of health care, and that doesn’t have to be a strange or radical concept.
“It has to be comprehensive. It has to be person-centered and it has to include wraparound services that include community living and other support services,” Rebecca Cokley told CBS News, “so that people aren’t left behind.”
Michael LoPolo