In 2019, Joelle Brouner began sweating and having abdominal pain during an event at the state Capitol.
At the emergency room at Denver Health, doctors learned her uterus was twice its normal size.
“I had to get a hysterectomy and my ovaries removed,” she said. “I feel like it was almost an accident that I found that out.”
Brouner’s enlarged uterus, or signs that it was swelling, may have been missed by doctors during routine health exams, she said.
Brouner has spastic diplegia cerebal palsy, a neurological condition that affects muscle control, and she has used a wheelchair since early childhood.
She has struggled to find health care providers who can offer appropriate care. Physicians often conduct routine physicals while she is seated in her wheelchair because they lack the appropriate equipment or staff trained to transfer her to an exam table, Brouner said.
“If people can’t get all the kinds of preventative care that they need, then they are at higher risk of finding out later that something that could have been handled earlier wasn’t, and now they’re in a bad situation,” Brouner said.
People with disabilities have been fighting for decades to get equal access to health care. And despite laws meant to protect them from discrimination, health care facilities and services are often inaccessible in Colorado and elsewhere around the country.
Now, the federal civil rights office charged with protecting those Americans is proposing more changes to an almost 50-year-old law that would, among other things, address the lack of medical equipment available for people with disabilities.
The move by the U.S. Department of Health and Human Services would help ensure access to critical, potentially life-saving care for people with disabilities, according to the rule published in the Federal Register in September. The public comment period on the proposals is open until Nov. 13.
Still fighting for equal rights
Almost 50 years after the first substantive piece of legislation intended to protect people with discrimination passed — known as Section 504 of the Rehabilitation Act — the disability community is still fighting for improved access to health care.
Something as seemingly simple as finding a primary care physician remains difficult for many people with disabilities.
Many medical offices and hospitals in the state don’t have a wheelchair scale or staff trained to transfer people with paralysis and some still lack accessible entrances or restrooms, Colorado advocates for the disability community said.
“These are things required by the federal government, but there’s no enforcement from the state and federal government and so the cycle of inequitable health care continues,” said Chanda Hinton, executive director of the Chanda Center for Health in Lakewood, which works to improve medical care for people with disabilities by providing acupuncture, adaptive yoga, physical therapy and behavioral, dental and chiropractic services in one facility.
“People aren’t getting access to care but nobody is monitoring it,” she said, “so there’s no data on this very particular issue that is being violated and causing a health disparity.”
The repercussions of the lack of knowledge about disability-competent care — the term for medical care that meets a person’s physical, clinical, intellectual, social and emotional needs — aren’t insignificant, Hinton said.
When people can’t get adequate medical services they’re at higher risk for developing additional health complications, cycling in and out of emergency rooms at a higher cost and risk of death, Hinton said.
“We have people using the ER as their primary care because they can’t find a primary care physician that will accommodate people with disabilities when it comes to equipment and understanding,” Hinton said. “Convincing people to reduce disparities is not where we should be living in health care.”
LEFT: Larry Ruiz was a Denver civil rights activist diagnosed with cerebral palsy, who was abandoned by his family and then institutionalized as a child. RIGHT: Ruiz became a Denver activist and was arrested more than 40 times across the country during nonviolent protests where demonstrators demanded equal rights for people with disabilities. (Contributed, Barry Rosenberg)
ABOVE: Larry Ruiz was a Denver civil rights activist diagnosed with cerebral palsy, who was abandoned by his family and then institutionalized as a child. He was arrested more than 40 times across the U.S. during nonviolent protests that demanded equal rights for people with disabilities. BELOW: Larry Ruiz was born with cerebral palsy and was abandoned by his family shortly after. He became a Denver activist and was arrested more than 40 times across the country during nonviolent protests where demonstrators demanded equal rights for people with disabilities. (Contributed, Barry Rosenberg)
Larry Ruiz, a Denver activist for people with disabilities, who had cerebral palsy, died in 2016 after he was hospitalized for a urinary tract infection.
“Larry went to the hospital for a UTI and because people were not sure how to work with people with disabilities, somehow he got pneumonia at the hospital,” said Damian Rosenberg, senior director of community partnerships at Personal Assistant Services of Colorado, who was Ruiz’s personal assistant and friend.
“They were feeding him and his lungs filled with fluid,” Rosenberg said. “The competency of working with people with disabilities was lacking and he subsequently got pneumonia and died, and he shouldn’t have died from a UTI going into the hospital in his 50s.”
Finding clinics and practices with accommodations is tough
There are few resources to help people with disabilities know which medical facilities will meet their needs.
As a result, many people with disabilities don’t receive proper medical examinations because equipment such as adjustable exam tables and mammography equipment are not always designed with their disabilities in mind.
As a consequence, people with physical disabilities are less likely to be current in mammograms and Pap tests, according to research published in the American Journal of Public Health in 2015.
“For me, the most concern I have is about annual care as a woman,” Brouner said. “Mammograms and Pap smears are the most inaccessible tests that I’ve had to have.”
Most mammogram machines are designed for people who can stand, which makes them inaccessible to people in wheelchairs because the person can’t lean into the machines properly, she said. It often takes medical professionals a long time to do a mammogram for Brouner or they don’t get clear enough scans and must redo the entire exam, she said. Brouner has paid extra money for a 3D mammogram that can identify certain cancers earlier, but technicians said her inability to lean into the machine made it hard for them to get clear images.
“People bend me in ways that hurt, especially if they push my head or my neck down into the machine,” she added. “I know they don’t mean to hurt me, but one time, I felt like my face was getting pushed down and I just said, ‘Stop.’ People need more training and sensitivity, and they need better machines.”
Brouner is so frustrated that she envisions a guerilla campaign to help drive home her point.
“One of the things I would like to see is a lot of women with disabilities, on International Women’s Day, or something, making tons of appointments for that day or the next day, so doctors have to deal with one patient in a wheelchair right after another,” she said.
Brouner said she would consider forgoing mammograms if her mother’s serious breast cancer diagnosis hadn’t alerted her that she is at higher risk for the disease.
People with disabilities are more likely to have risk factors associated with cancer than people without disabilities, according to The Lancet Group, a science and medical journal.
After Pap tests, Brouner has had to return to the gynecologist’s office to redo the test after doctors said the results were inconclusive because there was blood in the sample, “probably from all it took to get the sample” in the first place, she said.
Her inability to move her legs has meant doctors struggle to get her in the proper position for the test.
“I’m not as worried about this now because I’ve had everything removed,” she said. “But sexual health of people with disabilities is really an incredibly low priority on the list of whatever your medical priorities would be.”
Improving care
People with disabilities make up 9% of the population served by Colorado’s Medicaid program, yet account for 45% of the state’s Medicaid costs, according to a report by the state’s Medicaid department.
“We’re a significant part of the expenses, which is why I’ve always argued: ‘Make the care work for us and it will work great for everyone because we’re the canaries in the coal mine of health care,’” said Julie Reiskin, co-executive director of the Colorado Cross-Disability Coalition.
The state is beginning a third phase of the Accountable Care Collaborative, which Reiskin says makes it an opportune time to explore improvements to care for the disability community.
The Department of Health Care Policy and Financing, the state’s Medicaid department, created the first phase of the Accountable Care Collaborative in 2011 and it works to improve health care and get quality, cost-effective health care services to Coloradans with Medicaid.
“We would like to see Medicaid providers see disability not as a negative but just as a natural part of the human experience,” Reiskin said.
For the last six months to help improve care, people with disabilities and advocacy organizations have been working with Colorado’s Medicaid department to find ways to make disability-competent care more common across the state.
The group is working with the state Medicaid department specifically because most people with significant disabilities rely on Medicaid since private insurance doesn’t cover long-term daily services or many of their other specialized needs, Reiskin said.
“This conversation isn’t new and I remember talking about this in 2016, 2017,” she said. “I don’t want to make it sound like the state doesn’t care about people with disabilities because that is not true, and our Medicaid system actually does better than many other states, but this has not been the priority.”
The state Medicaid department doesn’t enforce laws such as the ADA but it is working with the coalition to explore ways to more fairly reimburse providers when they spend a longer time with patients with disabilities who need a higher level of care, said Adela Flores-Brennan, Medicaid director at the Department of Health Care Policy and Financing.
Metrics have been developed to assess accessibility of some health care facilities, but there are no federal requirements for systematic data collection on the accessibility of facilities or medical equipment nationwide, advocates said.
Still, the state Medicaid office is considering ways to meaningfully collect data on the number of providers who have certain pieces of accessible equipment such as wheelchair scales and Hoyer lifts, for example, Flores-Brennan said.
“One thing that is currently underway is disability-competent care training for providers who are treating people with intellectual disabilities who have mental health concerns and we’re building out another section to address physical disabilities as well,” Flores-Brennan said.
“What advocates also came to me with is information about limited access to disability-competent primary care, which is what I’m trying to get my head around and work on addressing with them,” she added.
Lack of knowledge creates barriers to access
Colorado health care providers have said they’re not accepting clients with disabilities because they don’t understand how to serve them or because it takes longer to care for them at each appointment and they’re not reimbursed adequately, Hinton said.
A 2022 study published in the journal Health Affairs showed many physicians are not sure how their practices are governed by the Americans With Disabilities Act. Many of them said their lack of formal training was a moderate or large barrier to caring for patients with a disability.
Almost 36% of the 714 outpatient physicians surveyed in one study said they knew little or nothing about their legal responsibilities under the Americans with Disabilities Act, 68% said they felt they were at risk for ADA-related lawsuits and 71% answered incorrectly about who makes decisions about reasonable accommodations at their facilities.
Physicians also tend to overestimate the negative aspects of living with a disability. Many said they thought people with disabilities experience a lower quality of life, even though most people with disabilities reported the opposite, according to the 2022 study.
Almost 41% of physicians surveyed were very confident about their ability to provide the same quality of care to patients with disabilities. Almost 57% strongly agreed that they welcomed patients with disabilities into their practices and 18% strongly agreed the health care system often treats patients with disabilities unfairly.
Stereotypes and biases about people with disabilities leads to prohibited discrimination, the study says.
“A lot of what we’re hearing from providers is, ‘We don’t serve enough people with disabilities to make our building accessible,’” Hinton said.
“But really, it’s that, ‘You don’t serve people with disabilities because your building is not accessible.’ In 2023, to even be having those types of examples and conversations with the health care community is blowing my mind,” she said.
Hinton has lived with a spinal cord injury since she was accidentally shot when she was 9. She has worked to help improve access to health care for people with disabilities for 18 years, the same length of time she has specialized in offering disability-competent care at the Chanda Center for Health.
On Oct. 18, she moved around the center in her wheelchair, pointing out features of the center that help her staff offer disability-competent care.
All of the restrooms are accessible and people can press a button to enter and another to lock the door.
The clinic has a wheelchair scale, which is important to help determine proper doses of medication and adequate nutrition programs, she said. Staff are trained on transferring people from wheelchairs to exam tables.
In the clinic’s yoga room, a functional electrical stimulation bike allows people to roll their wheelchair up to it. The machine helps people with paralysis move their legs and it increases blood circulation and relieves pain and pressure sores, she said.
Appointments are 60 minutes and people are not charged extra if their appointments run long. Each room has air units because people with disabilities often have a hard time regulating their body temperature, Hinton said.
“It’s these tiny, little simple things that are so critical and make a dramatic impact on somebody’s life,” she said. “We’ve created a bubble here and we’re not OK with that because people should be able to interact in the community at all clinics.”
At Craig Hospital, a specialty neurorehabilitation hospital in Englewood, people are treated for spinal cord injuries and brain injuries.
When people are released from the hospital’s inpatient and outpatient programs, they often have trouble finding primary care physicians or home health care workers, said William Scelza, a physician and medical director at Craig Hospital.
As a result, their family members often become caregivers, which makes it harder for them to work, he said.
If patients can’t find equal access to outpatient care, that makes it harder for them to recover well enough to find work or go back to school and become independent. As a result, they can become isolated at home, he said.
Many of Craig Hospital’s patients are referred to the Chanda Center for Health, he said.
Numerous major reports addressing the poor health of people with disabilities have called for improvements in training of health care providers in school and inclusion of people with disabilities in health research to help close the equity gap.
Most physicians are not trained in disability competency in medical school, and the model of care is rarely offered as a core curriculum, which limits their ability to provide such care, advocates said.
Federal nondiscrimination laws should be strengthened and governments should engage in “robust enforcement” of those laws, especially as the disability community continues to grow in size, according to an April 2021 opinion piece by National Council on Disability chairman Andrés J. Gallegos, a disability rights attorney who lives with quadriplegia after a spinal cord injury.
“Just think about living in the disability community. The fact that we’re fighting this still today is completely overwhelming,” Hinton said. “It’s very discouraging and it’s very scary. We are fighting for something that should technically exist and doesn’t.”