People Living With HIV and Disabilities Are Doing It for Themselves

Associate Editor
Steve Debenport via iStock

When it comes to making services accessible for people living with HIV and physical disabilities, the requirements go beyond just having a ramp. That much became clear at a Brooklyn forum held by the HIV Health and Human Services Planning Council of New York, a group tasked with developing spending priorities and allocating New York City's Ryan White CARE Act Part A funds.

Ryan White's Part A program funds services in metropolitan areas with high concentrations of individuals living with HIV. Two members of the council, Jan Carl Park and Billy Fields, were responsible for the forum and have been advocates for making sure people living with HIV who have physical disabilities are able to get the care they deserve. Park is hard of hearing and uses assistive devices, and Fields uses a wheelchair.

While having a ramp and an elevator may make you compliant with federal accessibility laws, just having those doesn't make a space accessible. Throughout the forum, attendees listed myriad ways that offices can be inaccessible to people, including not having a waiting room that has enough space to accommodate wheelchair users or desks that are too high to see someone sitting in a wheelchair on the other side.

Monica Bartley, M.S.W., a disability activist and wheelchair user, spoke at the forum. "If you're not able to see above the desk and you get passed over, you start to feel like a non-person," said Bartley, who is a community outreach specialist at Center for Independence of the Disabled, NY. "There's a way of making you feel like you don't deserve the service, or you have no right to access that service."

Bartley also shared that bathrooms should be made accessible for people with physical disabilities. While her own doctor's office does have a ramp, a bathroom unfit for a person with a wheelchair forced her to go down the street and use a McDonald's bathroom instead.

"Facilities should be able to accommodate you," she said. "Going into facilities, you should not go into a waiting room and you feel like you're disturbing everyone because you feel like you don't have space for your wheelchair, or you don't have a bathroom to go to."

HIV and the Relationship to Disability

HIV and disability are interrelated. According to UNAIDS, people living with a physical or mental disability are more likely than the general population to acquire HIV, and people living with HIV are more likely to have a physical disability than their HIV-negative counterparts. However, when it comes to envisioning and executing medical care for people with HIV, physical disabilities aren't always considered. In fact, according to one speaker at the forum, 45% of people with HIV have at least one disability, either with cognition, movement, or independent living. And those with at least one disability were more likely to have unmet service needs and to be less adherent to their HIV medication.

doctor and patient communicating with sign language
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Recommendations for Change, From People Who Know

Prior to the forum, the council drafted a list of recommendations for the New York City Department of Health to consider. They include improving data collection to determine how many people living with HIV in New York have disabilities, including hidden disabilities or mental illness, and training providers on how to give reasonable accommodations to people with physical disabilities. Also, they want to offer providers guidance on creating reasonable accommodations. Several people at the forum noted that some providers feel "reasonable accommodations" means solely offering a ramp or an elevator so that people who use wheelchairs can enter the space.

The council also proposed finding resources that would help providers meet these accommodation needs and to fund awareness campaigns that help patients know that they have a right to reasonable accommodations. The group stressed universal design, a design concept that means a facility is built to accommodate people of all ages, shapes, sizes, and abilities.

"If a place is not ready to receive you as you are, then that place should not be part of a Ryan White CARE contract," Fields said, eliciting applause from the crowd.

Attendees split into groups to workshop new recommendations that the council could add to the ones they presented. The groups reconvened after about an hour of discussion to share their recommendations, many of which involved expanding people's idea of disability to help address not only physical barriers to care, like lack of space for a wheelchair, but attitudinal barriers to care, including stigma and bias.

Attendees said that an easy solution to improving both attitudinal and physical barriers is to hire people with disabilities to be a part of staff. Despite employment discrimination against people with disabilities being illegal under federal law, people with disabilities still face various hurdles to getting employment, leading to a much larger unemployment rate among people with disabilites. One study showed that a person without disabilities was 26% more likely to get a response to a cover letter than an applicant who mentioned their disability.

Some attendees suggested instituting a "letter grade" system similar to the New York City Department of Health and Mental Hygiene's letter grades for restaurants, in which a lower grade indicates worse sanitary conditions in the restaurant. However, the "letter grade" system for people offering services would reflect whether they were accessible to people with disabilities beyond just complying to federal standards. Attendees applauded when one person mentioned using the grade to warn people with disabilities to seek services elsewhere.

"The burden is on the organization that you're dealing with to offer adequate access," one attendee said. "It's not up to you to find a facility."

Going forward, according to a spokesperson, the council will add any additional recommendations brought on by working groups to what the council already drafted. The additional recommendations will then be presented at a committee meeting in July to be approved. If approved, they move on to the larger council for approval. The next step is to codify the recommendations as part of the master directive that guides Ryan White Part A funds in the city.

The health department is also developing a resource guide to help Ryan White Part A providers improve their services and clarify how they can use their funding to improve accessibility.