Disability Advocates Praise New York State Medicaid Policy Changes

The new guidelines, which will took effect on February 1, come after a string of complaints from people with disabilities whose Medicaid insurance plans refused to cover wheelchairs appropriate to their needs. For years, vague and conflicting language in New York State’s Medicaid guidelines has encouraged insurance plans to refuse to pay for wheelchairs needed for use outside of a person’s home, leaving many individuals with disabilities stranded.

Problems Prompt Calls for Change

In one case, a man with cerebral palsy who is able to get around his home with a walker but who needs a wheelchair to venture outside his home was told by his insurer that Medicaid does not pay for wheelchairs for use outside the home, a position not supported by longstanding regulations. Though that decision denying the man’s wheelchair was reversed at a fair hearing and he eventually received the equipment he needed, that process took seven months after his doctor requested that he be provided with a wheelchair. For those seven months he was stranded without the chair he needed.

After hearing dozens of similar complaints surrounding denials for wheelchairs for community use, Civics League for Disability Rights (CLDR) President Sharifa Abu-Hamda requested a meeting with State Medicaid Director Donna Frescatore, and invited Jean Minkel, an assistive technology expert from Independence Care System (ICS), to discuss the issue. Both Sharifa and Jean developed recommendations that led to the new guidelines, which were published in December.

ICS, a nonprofit that runs the first and only Health Home dedicated to the needs of people with physical disabilities, also wrote a white paper for the State’s review to support the advocacy effort.

Disability Advocates applaud Medicaid guidelines change

Disability advocates, leaders and disability rights organizations praised the Medicaid policy language changes, noting that there will now be better protections in place to support people with disabilities who need wheelchairs for use outside their homes.

ICS President and CEO Regina Estela commended Sharifa and the CLDR for its continued efforts to effect change and support wheelchair users. “Over the past 20 years of working with people with physical disabilities, we have learned that the right wheelchair and independent mobility is fundamental to healthy, productive lives,” Regina said. “We were very happy to have invested in the wheelchair expertise needed to support the Civics League for Disability Rights to help all New Yorkers with physical disabilities.”

New York City Mayor’s Office for People with Disabilities Commissioner Victor Calise said that the updated guidelines will allow New Yorkers with mobility disabilities to lead more independent lives. “As a wheelchair user myself, I know firsthand how critical they are in everyday life, so these changes will ensure that all New Yorkers have access to the right mobility aids regardless of their level of ambulation inside their home.”

ICS member Anne-Elizabeth Straub said she breathed a sigh of relief after hearing about the victory in what has been “a battle” for people with disabilities to get what is required to live independently in the community.

“The need to concern oneself about coverage or even the possibility that coverage might be withheld for such a vital piece of equipment, is torturous,” Anne-Elizabeth said, noting that insurance companies must advance beyond the medical model of disability to understand that there is more to life than existing in isolation taking care of only the most basic physical needs.

“Even within the moment of celebration, is the realization that we need continuous vigilance and advocacy to hold the very organizations tasked with providing services to account,” Anne-Elizabeth said. “It is only by such advocacy, our own advocacy, as individuals, and that of organizations such as ICS, the Civics League, Independent Living Centers, and New York Legal Assistance Group (NYLAG), among others, working in coalition, that issues like these are brought to the attention of the Department of Health and we can come up with  solutions.”

Wheelchair users say change was long overdue  

Many wheelchair users, including ICS Advocacy Specialist Marcus Johnson, said that policy language change has been a long time coming, and he is thrilled with the change and hopes it allows for wheelchair users to live independently in their communities.

“It still frustrates me on what took the powers that be so long to recognize this obvious need,” Marcus said. “This need has been presented to these powers years ago, and kept falling on deaf ears, but if it’s not their problem, it’s not a problem. The reality is, disability is the minority that crosses all races—anyone can become disabled at any given moment. It’s time for the world to get on board and make the necessary equitable changes respecting the right for all to have a respectable quality of life.”

Sharifa noted that she was happy and surprised by the decision. She said many CLDR members spoke to her about being denied power wheelchairs, and that others were denied wheelchairs because they were either receiving home care services or were able to walk inside their homes. Members felt trapped in their homes, with no resolution in sight to address their need for independence.

“When I learned that the updates would actually happen, I was happy and surprised. I felt liberated!” Sharifa said. “I received many calls, Facebook and text messages from members, peers, and advocates—they’re happy. The disability community won a big fight. We are one voice and we will continue to advocate until all of our needs are taken care of. Now we need to make sure that every Medicaid insurance plan is aware that they cannot deny people the wheelchairs they need for use outside the home.” For the full press release, click here.