Congress: Don’t take away my freedom machine

When I was 19 years old, I broke my neck, causing me to become a wheelchair user due to paralysis from my neck down. Since then, during the past 47 years, the wheelchairs in which I have spent my days have vastly improved — though not without periods during which I have struggled painfully when adapting to new chairs and different suppliers. Today, I have a complex power wheelchair that is highly customized to my individual needs and issues and continually readjusted enabling me to actively engage in family and community life.

Unfortunately, unless Congress acts soon to reverse a Bush administration decision to subject complex power wheelchairs to a competitive bidding process, other persons with disabilities who like me rely on customized wheelchairs will soon be subjected to a diminished quality of life. My power wheelchair, which I consider to be a freedom machine, will, when it requires replacement, be replaced by a standardize piece of equipment that will almost certainly guarantee hospital stays and long periods of bed rest imposed by preventable pressure sores.

Under a new competitive acquisition program enacted by the Centers for Medicare and Medicaid Services (CMS) just this year, I will be forced to accept technology that will not meet my needs. The equipment I will receive will be the result of a one-size-fits-all competitive bidding system that predictably will lead to more standardized, non-customized, ill-fitting chairs that will inevitably cause suffering and further immobility.

In an effort to save costs, CMS has designed a competitive bidding program for durable medical products under Medicare reimbursement. Under this system, basic technology and more complex rehab devices are grouped together. The more complex equipment obviously has a higher cost than standard equipment, yet, the reimbursement is the same. Existing reimbursement inadequacies will be magnified through competitive bidding as suppliers are required to bid below the existing fee schedule. In order for a complex rehab provider to win the bid and provide products for a patient, the provider has to bid low. But the low bid will likely yield a standardized device appropriate for individuals with moderate mobility impairments, but woefully inadequate to the complex needs of those of us with severe disabilities.

Cost-effectiveness is a laudable goal, but the process of awarding the provision of complex rehabilitation equipment to the lowest bidder is an instance of costly unintended consequences. The cost of a pressure sore, which often results from ill-fitting equipment, far exceeds the savings that may accrue under the bidding process. A 2003 study, published in the Journal of Rehabilitation Research and Development, reports that of 57 patients studied, on average each patient was hospitalized for 156 days over a three-year period for pressure ulcer treatment, costing approximately $8,550,000.

This is not just speculation. I have experienced the dire outcomes of improperly fitted chairs before. The first time I had to make do with an improper chair, I developed pressure sores so severe that surgery was required. The second ill-fitting chair I once used resulted in pressure sores so debilitating that I was bedridden for a year, lost my job, and was compelled to bear excessive unnecessary costs.  In addition, if I did not have a chair that was unique to my needs, I could not be as independent as I currently am. This is not just my story; I fear this will be the story of thousands of persons with disabilities if Congress does not roll back the competitive bidding provision regarding complex rehabilitation equipment.

Reps. Tom Allen (D-Maine) and Ron Lewis (R-Ky.) have introduced H.R. 2231, the “Medicare Access to Complex Rehabilitation and Assistive Technology Act of 2007,” which will exempt complex rehab and assistive technology products from this competitive acquisition program. What originated as a cost-saving measure will instead become a complex rehab patient’s nightmare. Among those affected will be the most vulnerable of society — those affected by cerebral palsy, stroke, spina bifida, multiple sclerosis, muscular dystrophy, traumatic brain injury or, like in my case, spinal cord injuries.

H.R. 2231 would exempt only this very complex technology from the bidding program. The cost of doing so would be about $50 million annually — a small price to pay when balanced against the enormous cost of hospitalization by a compassionate nation so that the severely disabled need not suffer in a one-size-fits-all world.

Connors lives in North Branford, Conn.