Disabled residents and their advocates appreciated the Social Service Department’s decision to postpone new regulations for determining who qualifies for a customized wheelchair, but they still had concerns about how the current regulations are being applied.
Despite the snow, which made it difficult people to attend the Monday’s hearing, dozens of disabled individuals, their caregivers, clinicians, and wheelchair vendors turned out for an informational hearing at the Department of Transportation headquarters in Newington.
The draft regulations, which have since been scrapped by the department, would have changed who qualifies for wheelchairs under the Medicaid program and whether recycled parts can be used. State officials estimate that adopting new regulations could save it about $800,000. Annually, an average of 1,600 to 1,700 Medicaid beneficiaries receive customized wheelchairs.
Kate McEvoy, director of Medicaid Services for the department, said that based on comments from the disability community the agency decided not to implement the new regulations, which will instead go through the “full regulatory process.” In the meantime, it will continue to use the statutory definition of “medical necessity” to review requests for customized wheelchairs.
But it was clear Monday that the disabled community is unhappy with how the department is interpreting the 1989 regulation.
Carol Runlett, who has multiple sclerosis, was one of dozens of individuals who were denied motorized wheelchairs by the department last year. In Runlett’s denial notice, state officials said that “although the patient may prefer to be independent, her medical condition and depression is not addressed or ‘treated’ by independence.”
“Mobility-related ADL needs, psychosocial support, and postural changes should be addressed via 24 hr./daily caretakers at the skilled nursing facility,” the Oct. 18, 2013 denial reads.
Runlett and Arthur Gallagher, who also suffers from multiple sclerosis, live in a Branford nursing home. They are represented by Sheldon Toubman of New Haven Legal Assistance.
“I do live in a nursing facility, but we don’t have people 24 hours a day take us where we want to go,” Runlett said. “When you’ve been independent all your life and all of a sudden you get hit with this and you can’t be independent anymore, it’s very, very frustrating and hard to deal with in a lot of ways.”
Gallagher said getting the motorized wheelchair has improved his quality of life and his independence. “I can go when I want. Where I want and how I want and it’s been a tremendous boost,” he added.
Toubman said there have been dozens of nursing home residents who were denied access to motorized wheelchairs because they were living in a nursing home where staff could presumably push them if they couldn’t operate a manual wheelchair.
The department reversed Runlett and Gallagher’s denials. According to a Feb. 11 letter from Social Services Commissioner Roderick Bremby, the reversals were attributed to “receiving and reviewing additional clinical documents and information about these individuals.”
“There’s is no information that could have been provided to contradict the department’s statement that ‘independence does not treat your medical condition’,” Toubman stressed Monday.
Toubman said no new information was submitted in the interim. The only thing that had changed was that WTNH did a televised report about Runlett and Gallagher’s denials.
“Does the department still stand by these repeated letters about folks in nursing homes that they’ve stated here or is the department now going to follow medical necessity definition in state statute?” Toubman asked.
Michael Shaw, executive director of New Horizons, a large residential facility for people with severe physical disabilities in Unionville, said he’s seen the evolution of need and technology happen over his last 30 years with the organization.
“To ask someone at New Horizons to go 10 years without a customized chair is not feasible,” Shaw said. “They go to Unionville, they go on their own, they visit family, they work, they go to school. That chair is mobility. It is as important to them as my limbs are to me.”
He said people with disabilities like multiple sclerosis don’t want to be confined to a room in a nursing home relying on a nurse call button to get to the bathroom or leave the facility.
“No one’s available,” Shaw said of the staffing shortage at nursing homes. “Trips outside the facility become impossible.”
Jean Mills, of Connecticut Legal Services, said anyone who has spent any time in a nursing home knows that there is “no such thing as 24/7 ability of somebody to provide mobility.” She said there’s legislation currently pending to raise staffing in nursing homes to half of what the national standards dictate.
“Even if staffing in a nursing home 24/7 is an alternative to somebody having independence, it certainly doesn’t exist,” Mills said.
Ronnie Martin said her motorized wheelchair no longer complies with Department of Transportation regulations, so she had to use a manual wheelchair to attend Monday’s hearing and in the process sacrificed comfort.
“My precious dignity and independence vanish when I’m not in my custom wheelchair,” Martin said. “My custom wheelchair is made to my unique needs. Every feature from the cushion to the headrest are made for my body and my disability.”
Cathy Ludlum of Manchester echoed Martin’s remarks.
“Each wheelchair is unique just like how unique each person is,” Ludlum said. “. . . My body is very complex. My movements that are still available to me are very small and it takes a lot of very specialized technology for me to move around.”
She said “you can live in a manual chair, but you can’t LIVE in a manual chair, if you know what I mean.”
Melissa Marshall of Disability Policy Consulting said overall the proposed regulations have “too much bureaucracy, too much tape, too much complexity,” and they need to be simplified. She said they want disability advocates and their attorney to be on the panel when the regulations are being drafted.
“We need people who don’t work for state agencies to be part of that group,” Marshall said.
Robin Cop, a nurse therapist for 22 years, said there are 16 to 18 pages of information she has to fill out for her clients to get them approved for a custom wheelchair, but she feels her judgment about what the patient needs is being undermined by the department when it issues these denials.
It takes six months to a year in some cases to get clients approved for a custom wheelchair because they have to fight the denials.
“I am very frustrated with the whole process as a clinician because cost-effectiveness is getting the patient the right tool the first time we do it,” Cop said.
She said she’s had a patient who developed a pressure sore, not because of the hospital or the facility, but because they had the wrong wheelchair.
“You put a used shoe on somebody else’s foot, it is not going to fit,” Cop said.