Independence Care System’s Senior Vice President of Clinical Programs and Population Health Rachael Stacom recently served as one of several guest panelists at the HIV Health & Human Services Planning Council of New York’s Forum on Disabilities. This event was focused on improving access to health and community services for people with disabilities who are also living with HIV.
The forum—hosted at The New York City College of Technology on June 20—was attended by disability advocates, community members—including ICS members—representatives from the Mayor’s Office for People with Disabilities, New York City Taxi and Limousine Commission, and the Department of Transportation. Leaders from nonprofit and advocacy organizations including ICS, Disabled In Action and the Center for Independence of the Disabled New York (CIDNY) also attended.
Established in 1991, the Planning Council is responsible for designing service models and distributing Ryan White funds—federal money earmarked to ensure that people living with HIV (PLWH) have access to medical and support services.
The Planning Council’s Needs Assessment Committee, tasked with identifying gaps in services for PLWH in the New York City metro area, identified people living with disabilities as an area of concern. Recently, the committee has examined issues of access, adaptive technology, improved service coordination and data collection, and taken major steps to deepen its understanding of the Americans with Disabilities Act (ADA), and state and local human rights laws. Planning Council members also received training from CIDNY to understand how PLWH are impacted by disabilities.
At the forum, Planning Council representatives discussed physical and attitudinal barriers for PLWH with disabilities, and presented draft recommendations for changes to its portfolio of services, while seeking public input. The recommendations include:
- Improving and enhancing data collection on disabilities within the Ryan White funding portfolio
- Training providers on how to offer reasonable accommodations and how to use pertinent data to develop service plans
- Providing guidance to ensure compliance with all relevant laws, and strengthening oversight
Panelists discuss accessibility
A highlight of the morning was a moderated panel discussion of the barriers to healthcare that people with disabilities routinely face. In addition to ICS’s Rachael Stacom, the panel included Director and Governmental Co-Chair of the New York HIV Health & Human Services Planning Council Jan Carl Park, CIDNY Senior Benefits Counselor Greg Otten, CIDNY Community Outreach Specialist Monica Bartley, and New York City Commission on Human Rights Deputy Commissioner for Intergovernmental Affairs and Policy Dana Sussman.
“My primary role is to look at opportunities to improve health outcomes for our members and reduce health disparities where there are gaps in care,” Stacom said. “We work to keep our members healthy, mobile, independent, and functioning at their highest capacity.”
Asked to address the biggest barriers, panelists cited attitudinal and architectural issues, from limited subway elevators and bathrooms to providers’ lack of knowledge in serving people with disabilities.
Bartley described the widespread absence of voice-reading technology and large print materials for those who have low vision or are blind. She also talked about how people with disabilities are often simply ignored. “They won’t address you,” she said. “They make you feel like a non-person.”
Stacom highlighted the lack of access to expert wheelchair evaluation and repair services as another barrier, noting that many people have joined ICS to ensure their wheelchair needs are met.
“There are certainly some places that have these wheelchair programs, but their wait list is so long,” she said. “If you don’t get a repair quickly, people are stuck in bed. They don’t get to go to work or see their friends. We know the emotional problems that social isolation can cause, but it also causes physical impairments. That’s a continuous fight.”
Sussman noted that the training of providers and creating disability awareness has been a challenge.
“One thing we know that can make a real difference is working with providers to train their staff on the front end,” she said. “So when people are making appointments, you offer a date and time, but you also ask, do you need any other accommodations?”
Otten pointed to insurance as a major barrier for people with disabilities, as well as provider indifference. He offered a personal example of how ICS supported a friend of his.
“I have a good friend who was in a nursing home. I had to fight for a year and a half because the nursing home blatantly disregarded my letting them know that he intended to return to the community and he needed community Medicaid,” he said. “They insisted that he could only have that for a year. And a saint at ICS helped me with that. She believed me when the nursing home wouldn’t.”
Another question asked of the panelists focused on common misconceptions about the disability community, ranging from people faking disabilities to receive attention to accommodations costing too much. Panelists also highlighted past and more recent successes, including making homeless shelters accessible for people with disabilities, the rollout of curb cuts on street corners, and greater accessibility at polling sites.
Panelists agreed that as long as people with disabilities remain united and advocate to ensure their voices are heard, more successes surrounding better access to health and community services will come. Stacom cited ICS’s launch this year of New York State’s first-ever health home program for people with physical disabilities.
“Today ICS exists for people with disabilities who struggle with HIV, substance abuse, homelessness and chronic disease, and that’s because our members advocated for us,” she said. “So many people make assumptions about what someone with a disability can or cannot do. And there’s a simple fix for that. We need to ask people: How can I help you?”
The Planning Council will continue its discussion in a series of upcoming meetings that are open to the public. The next is this Thursday, July 11, at the LGBT Center in Manhattan, from 10 am to noon. The calendar of upcoming meets can be found here.