Wheelchair users win essential protections from State Department of Health.

NEW YORK CITY – A string of complaints from people with disabilities whose Medicaid insurance plans refused to cover wheelchairs appropriate to their needs has led to new guidelines that will take effect on February 1. For years, vague and conflicting language in New York State’s Medicaid law 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.

One 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 current regulations. While the decision denying the man’s wheelchair was reversed at a fair hearing and he eventually got the equipment he needed, that process took seven months after his doctor requested that he be provided with a wheelchair – seven months in which he was left a prisoner in his home.

After hearing of dozens of similar complaints, Sharifa Abu-Hamda, president of the Civics League for Disability Rights, asked State Medicaid Director Donna Frescatore for a meeting to discuss the problem. Abu-Hamda invited Jean Minkel, an assistive technology expert from Independence Care System (ICS), to these discussions. Together, Abu-Hamda and Minkel developed recommendations that led to the new guidelines, published in December. Independence Care System 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.

“At last, people with disabilities like me can stop worrying about whether we will be able to get the equipment we need to get out of the house,” Abu-Hamda said. “Without my chair, I wouldn’t be able to work or to visit my family. I actually wouldn’t be able to get out of bed! When we raised this issue last fall, Donna Frescatore and her staff immediately understood what was at stake. I truly appreciate their quick action in adopting our recommendations. 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.”

Regina Estela, President and CEO of ICS said, “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. 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.”

Victor Calise, Commissioner of the New York City Mayor’s Office for People with Disabilities, said, “The updated Medicaid guidelines will help enable 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.”

Brad Williams, Executive Director of the New York State Independent Living Council (NYSILC), said, “This victory should reinforce to our peers the value of advocacy and grassroots community efforts.  These changes will make it easier for New Yorkers with disabilities to live independently in the community as promised by the 1999 Olmstead Supreme Court decision.

Valerie Bogart, Director of the Evelyn Frank Legal Resources program at the New York Legal Assistance Group, said, “This is a significant victory for people who use wheelchairs. It is important that the Department of Health heard consumers’ voices and clarified the language of the guidance to make it easier for wheelchair users to get what they need to live in the community. This change will also mean fewer fair hearings and decrease dangerous delays for wheelchair users who have previously endured long delays as their case wound its way through the appeal process.”

Vincenzo Piscopo, President and CEO of United Spinal Association said, “No person should be excluded from opportunity based on their disability. United Spinal’s goal is to ensure all people with spinal cord injuries are provided opportunities to maximize their independence. Greater access to wheelchairs is not only a huge win for our members, but for business, government, and all of society to begin focusing on inclusion and embracing the talents of the disability community.  I am very pleased that New York State has taken the important step of issuing these guidelines.”

Susan Dooha, Executive Director of the Center for Independence of the Disabled, New York, said, “This is great news for New Yorkers who use wheelchairs in order to live their lives. The ability to travel outside one’s own home is an essential part of independent living. With this Medicaid update, we’ve taken one more step in ensuring all people can live their lives independently.”

Joe Rappaport, Executive Director at Brooklyn Center for Independence of the Disabled, said “Not only are wheelchairs essential in the lives of many of the people we serve, many of our staff are wheelchair users. For many people with disabilities, being denied a wheelchair is tantamount to losing their legs. No one should have to fight to get essential services they are entitled to. I am hopeful that the new guidelines will prevent a lot of the horror stories we’ve heard in the past.”