Most of us realize we are fortunate to be living in the United States, but at the close of 2011, getting the adaptive equipment you need is getting trickier. Pressure on legislators to reduce budget deficits by making deep cuts in Medicare and individual state Medicaid programs is reducing available funding for wheelchairs. And most private insurance companies are following suit, covering fewer durable medical equipment costs. In the current economic climate, wheelchair users must become adept at navigating the system and advocating for their own needs.
Fortunately, Users First — a grass-roots nonprofit organization operating under the umbrella of United Spinal Association — is dedicated to educating and advocating for disabled consumers. Users First is committed to supporting consumers, but its main challenge is to motivate wheelchair and adaptive equipment users to speak out for themselves. Users First does not endorse specific companies or brands, but guides the consumer to qualified professionals.
“If consumers don’t speak out with a united voice, funding will continue to be cut,” says Ann Eubank, executive director of Users First. “There is nothing in the ADA that talks about wheelchairs. All we are asking is that you be counted as a wheelchair user, that you join the battle to get what you need to be independent.”
Jennifer Wolff, 40, a certified occupational therapist and wheelchair user (T10 SCI) from Waverly, Iowa, has joined the fight through her association with Users First. She met Eubank in Washington, D.C., when she traveled there for a Continuing Education and Legislative Advocacy conference. She joined hundreds of other wheelchair users and industry professionals in meeting with legislators and telling their stories of insurance denials and hardships caused by inadequate funding for needed equipment. “What I’ve heard from legislators one on one,” Wolff says, “is they want to hear from the consumers. They don’t really want to hear from the suppliers. They want to hear from the people themselves about the difficulties they’re having, but they want to hear from enough people so they can show that it’s an issue.”
Wolff told legislators about her two-and-a-half year battle to get a replacement wheelchair. Her first chair was an Invacare ultra-lightweight MPV (coded K0005 for Medicare reimbursement purposes). After several years, she needed a new chair to remain active, but Medicare denied her claim twice and forced her to settle for a lightweight chair — downcoded to K0004 — a much less expensive chair that lacked adjustable features. “I still have to use my old chair in my house because my new chair is too long for my bathroom,” she says.
The problem of downcoding is not confined to Medicare clients. Diane Thomson, an OT who runs the outpatient wheelchair seating clinic for the Rehabilitation Institute of Michigan in Detroit, also had difficulty getting a K0005 chair for her client, a T11 complete para since 1988. His private insurance carrier denied a claim for a TiLite Aero Z, an ultra-lightweight adjustable aluminum chair. When Thomson and her client appealed, they were denied again and told that the insurance would only cover a K0004 chair. Reimbursement for these chairs rarely is more than $600-$700, while the Aero Z can run anywhere from $1,550 (base model purchased online) to $3,000 for a loaded model. Thomson’s client was told he would have to pay the difference out-of-pocket.
Fortunately, the equipment supplier, National Seating and Mobility, succeeded in getting the insurance carrier to up the reimbursement. However, this is not the norm. In fact, one of the major problems with reimbursement levels is that there is no norm. Thomson says she has compared notes with several other seating specialists in her state, and for some reason Michigan is especially troublesome. Ultra-lightweight and titanium chairs (K0009) are almost impossible to get covered, she says.
“The funding issue is large and all over the board,” says Marty Ball, VP of sales for TiLite and a wheelchair user for more than 50 years. “That’s the problem. Every state is different, every situation is different, every disability is different. And then there are human beings involved in making these decisions. That’s another very big variable.”
“If you want titanium,” Thomson says, “you must document a specific diagnosis stating that vibration exacerbates pain. Titanium absorbs vibration and is known for durability, but you have to prove medical need. PVA has a clinical practice guideline that can help do that.” (See Resources.)
The disability community learned a valuable lesson in 1977 when national news coverage focused on the occupation of the Health, Education and Welfare Office in San Francisco. Disability rights activists refused to budge until HEW Secretary Califano signed Section 504 of the 1973 Rehab Act — activists stayed put for the better part of a month, forcing the Nixon administration to make good on legislation which had been passed but not implemented. TV cameras captured the drama day by day. That kind of dramatic media exposure is still possible today, and may even be enhanced by wise use of social media.
In October of this year, a Boston Globe story, combined with a mother’s defiant attitude, forced MassHealth (the state’s Medicaid program) to renege on a previous denial for a pediatric power wheelchair.
Courtney Davidopoulos, of Lowell, Mass., mother of Matthew, just 2 years old, is a mom with a mission. On Matthew’s second birthday, she and Matthew’s physiatrist agreed that the boy, diagnosed with spinal muscular atrophy at the age of 8 months, needed a power wheelchair to get around. Matthew’s SMA was type 1, the most severe form.
In May, Courtney teamed up with a certified supplier and was able to get a demo chair for Matthew to try out. “We needed lots of blankets and pillows to create correct seating and positioning,” Courtney says. “Matthew spent six one-hour trial troubleshooting periods in the demo chair before we ordered,” she says. In June a letter of medical necessity was sent to MassHealth. They denied the chair, saying they needed a video of the 2-year-old driving his chair effectively and independently.
“This is what drove me crazy,” Courtney says. “How could we actually do this when we didn’t have an appropriate chair in the first place?”
“Independently?” says Eubank. “No 2-year-old on the planet would be left alone to move about independently, wheelchair or not,” Eubank says. So Courtney went back to the supplier. More docs and files related to need were submitted. Again MassHealth denied the claim — two and a half months later.
“They were making it impossible for us to prove our need,” says Courtney.
“So we asked for a ‘request for a fair hearing’ — because no number of forms submitted would change their mind.” Courtney decided to enlist the support of a government-funded protection and advocacy legal organization. She also e-mailed Users First and United Spinal attorney James Weisman. At the same time, the Boston Globe was informed of the situation.
The article came out Oct. 16, a Sunday. Massachusetts Sen. Scott Brown was contacted, and he got on the phone with MassHealth. Courtney, outraged, did not stop there. She posted the Globe story on her Facebook site and asked friends to contact the Director’s Office of MassHealth if they objected to their decision. That same day 140 people contacted MassHealth and complained about the way Matthew was being treated.
The next day, Oct. 17, Courtney got a call from MassHealth saying the chair had been approved.
Even though it looks like a victory, Courtney says the process has left her jaded. “Even as someone who works part-time, I was not prepared for the amount of time and energy and stress involved in getting a chair. What about others who have less time and no one to help them?”
There are some bright spots despite the current downward trend in claims approvals and funding. Scott Earley got some unexpected help with his equipment needs when he attended the Independence Expo sponsored by United Spinal in Orlando, Fla., in September 2011.
Earley is a T12 complete para, injured in 1998. In addition to his SCI, he had to have a hip replacement and a steel rod implanted in a femur. “I’ve had four chairs since then. Every one of the chairs I’ve had just felt uncomfortable. I always thought it was because of the problems with my leg. The steel rod is longer than what it should be. But I popped into the Users First booth at the Independence Expo and started talking with Ann Eubank, and she explained that there are technicians out there that are certified, and that they could help me get into a custom chair that is made just for me. All this was like a foreign language to me. I knew none of this.”
Earley’s first chair was a standard chair with no adjustability. He says it caused pressure sore problems and he was in and out of hospitals for six years. He was unable to return to work. Part of the problem was incorrect cushioning. “They put me in a gel pad. They work for some people, but for someone with a hip replacement, it wasn’t good at all. It caused a sore on my sacrum as well as on both cheeks. They changed me to a ROHO, and I’ve been using air cushions ever since. Now I’m in a Varilite Evolution, another air cushion, and I haven’t had any breakdowns since I started using air cushions.”
At the Users First booth, Eubank connected Earley to Lauren Rosen, a physical therapist who works out of St. Joseph’s Children’s hospital in Tampa. She did a bone density scan to see if he could get into a standing wheelchair. “It was like the difference between night and day,” Earley says. “What I used to do was go into the vendor if I needed a repair or a new chair and he would say, ‘OK, we’ll just use the measurements we used last time.’ When I told Lauren this, she said, ‘Are you kidding, don’t they believe that people actually grow and change in weight and size over the years?’ Lauren gave me a complete workup, measuring legs, height, weight, everything. They even measured my back. I felt like I was going to a custom tailor and getting fitted for a new three-piece suit. All this was so I would feel comfortable in my new chair.”
And what will the new chair be? A Permobil power standing chair! “The people at Permobil said they have done this three times in the past, once with a T7 para.” Time will tell if Medicare and Florida’s Medicaid, in conjunction with the state Vocational Rehabilitation Services, will cover the substantial cost. Earley plans on being a forensic pathologist and just got accepted into a university. If his plan succeeds, he will pay back the government (and Medicare) many times over and stay out of the hospital.
“If we can get legislators to see this as an investment, everything will change,” Marty Ball says. “We are trying to get people a life, and in many cases, make them taxpayers. Well, my God, that will cover the cost of this equipment, won’t it?
• Users First — www.usersfirst.org.
• Roll on Capitol Hill — June 25-26, 2011; www.unitedspinal.org/events/roll-on-capitol-hill/.
•“Preservation of upper limb function following SCI” — available on PVA website, www.pva.org.