By James A. Lomastro, PhD
James A. Lomastro, PhD, is a freelance, international surveyor, and advocate with Dignity Alliance Massachusetts. He holds a doctorate in Social Welfare Administration from Brandeis University’s Heller School and has spent more than four decades working in healthcare administration.
Most non-disabled think of a wheelchair as a piece of medical equipment. They are wrong. A wheelchair is mobility. It is independence. It is employment. It is family. It is community. It is the ability to leave one’s home, go to a doctor’s appointment, buy groceries, attend church, visit friends, and participate in civic life. For many people, a wheelchair is not equipment at all. It is an extension of the body.
When a wheelchair breaks, the consequences can be catastrophic. Recently advocates working on wheelchair repair reform heard the story of a Massachusetts woman whose wheelchair malfunction left her improperly positioned for an extended period. The result was a cascade of medical complications, including pneumonia and a prolonged hospitalization. The immediate cause was mechanical failure. The deeper cause was a repair system that failed her when she was most vulnerable.
The public rarely sees these stories because wheelchair repair sounds technical. It sounds like an administrative problem. It is not. It is a civil rights issue.
Imagine if your car broke down and the repair company told you it might take six months before anyone could look at it. Imagine if there were only a handful of authorized repair providers in the state. Imagine if your ability to work, leave your home, or attend medical appointments depended entirely on that repair. That is the reality many wheelchair users face.
The disturbing part is that Massachusetts has already tried paying providers more. For two years MassHealth has provided incentive payments intended to improve repair performance. Yet advocates report little measurable improvement in repair turnaround times. Why? Because the problem may not be payment levels alone. It may be the structure of the market itself.
Some wheelchair vendors sell chairs costing tens of thousands of dollars while treating repair operations as a separate line of business. This allows companies to argue that repairs are unprofitable while remaining profitable overall. The strategy will sound familiar to anyone who has examined nursing home finance, where ownership structures often separate real estate, management, and operations in ways that obscure where money is being made.
The pattern is larger than wheelchairs. Across health care and long-term services, public programs frequently pay for access while paying too little attention to accountability. Governments fund systems that are essential to daily life but often lack the leverage or transparency needed to ensure those systems work when people need them most. The result is a quiet form of captivity. No one intends it directly. No one designs it openly. But, they fail to name it for what it is and the outcome is the same. A person becomes trapped not by their disability but by the failure of the systems upon which they depend.
The lesson extends beyond people who use wheelchairs. A sledding accident. A stroke. A spinal cord injury. A fall. A neurological illness. Any of us could become dependent on mobility equipment tomorrow. Disability is not a separate category of people. It is a condition that most of us will experience directly or indirectly during our lives especially as we grow older. That reality should change how we think about wheelchair repair.
This is not a niche issue. It is a test of whether we are willing to build systems that recognize human dignity, dependence, and vulnerability. The question before Massachusetts is simple. If a wheelchair is an extension of the body, why do we tolerate repair delays that would never be accepted if the body itself were waiting for treatment?