by Sharon Beddingfield
As a person with disabilities on Medicaid, welfare, and food stamps, I must exercise to maintain mobility and health. My disabilities, cerebral palsy and asthma, have become so severe in the past two years that I was hospitalized four times and required massive doses of antibiotics, steroids and nebulizer treatments. My balance was severely affected. I could not bend to get into my bathtub; I could not walk without holding onto a wall for balance. I could not stand to cook meals, and after each chore, I had to sit and catch my breath. Waking up every morning, rolling to get up because I didn’t have the muscle strength to sit up, gasping for the nebulizer for breath. I couldn’t even bend over without falling over and when I tried to rise from the floor it was with great effort and breath.
From this description, you might think I weighed 300 pounds. In fact, I weighed 175 pounds after gaining 20 pounds during hospitalizations and steroids. You might also think that this is normal for a person with disabilities, but it’s not. For most of my life I was 4 feet, 11 inches and weighed 100 pounds. You would hardly have known I had a disability at all.
I was a tomboy, climbing fences, running with only an occasional trip over my feet. In fact, before mainstreaming, I was the first disabled person to attend public school in Virginia. My weight is the result of having two kids through C-sections, which cut my stomach muscles both ways. The extra weight in the middle may not seem like much, but it greatly affects my balance and coordination. Combine that with cerebral palsy, which stiffens my back leg muscles, and an inactive life in the winter due to asthma, and you’ve got a challenge.
The first thing you might ask is: “What about physical therapy?” I have been through PT four times, but it only lasts for about a month and then I have to stop. There is no plan to be able to continue it on an ongoing basis to maintain mobility and health, especially if I want to work out at a gym to do it.
In my case, the hospital HMO owns a chain of wellness fitness clubs that are adjacent to rehab clinics in most areas, with the PTs using the fitness club machines. Medicaid will pay for PT and provide Medicaid transportation, but if I go to a fitness club on my own to continue working out, I am not allowed to because fitness center is not considered a medical necessity. Medicaid will not pay for it.
PT charges the state approximately $40 per 15-minute session using the fitness club machines, but if I were to go to a fitness club, it would only cost $34 per month for unlimited visits. This is the same fitness center that rehab uses, and the same HMO.
This is why I have the first fitness bill for persons with disabilities under Medicaid in the Virginia General Assembly. Sponsored by Delegate Mary Christian, HB1105 will allow persons with disabilities presenting a physician’s note to exercise to maintain mobility and health and provide Medicaid transportation to the fitness center.
You might ask, “Why does she need to go to a fitness center? Why can’t she exercise at home?” I live in a mobile home in a heavily populated city. For me, trying to run across heavy traffic is dangerous. To walk in extreme heat, cold or rain sets off an asthma attack. But when I exercise in a wellness/fitness club, the climate is controlled. The floor is carpeted in case I fall; someone is there in case I need help. This is not about losing weight, but about maintaining muscle control and strength and working systems such as your lungs. Dieting alone will not unstiffen my legs or give me muscle strength to walk and perform life skills such as work. Doing rehab stretching exercises at home won’t build muscle either. Stretching exercises should be a warm-up before weight training.
And I do enjoy getting out of my home, as I am a single mother of teens and don’t get much quiet time alone. Unfortunately, some of the comments I have received from various health care providers are: “That’s okay, we all get a little heavier as we get older,” “Why should we pay for your extra activities?” “Why don’t you just diet?” and “Why can’t you do it by yourself at home?”
But the worst response came from the Department of Rehabilitation Services when I asked for transportation to a fitness center as part of my plan to go to work. The department gives me ride tickets for job-related trips to classes or other job sites. If I wanted to go to college, it would pay for that. If I wanted a motorized wheelchair, it would pay for that. But it won’t pay $52 in ride tickets to keep me out of a wheelchair! Their response: “Getting fit for a job is not job-related.”
Nothing could be further from the truth! The more I work out, the more strength, endurance and coordination I gain. I finally persuaded my health care provider to agree to a trial period with an asthma nurse, dietitian and exercise physiologist as consultants for six months. But even then I had to fight attitudes about using the fitness center. At first they would only agree to one workout per month. Remember, my goal is not weight loss but muscle strength and endurance, measured by improvement in everyday activities.
After just over one month, I can walk better but still use a walker for balance. I can move both arms with more coordination, I can bend over and get up and down from higher levels such as doctors’ exam tables, and my height level on fitness machines has increased. My energy level is high (with no asthma medication). I now have the energy to look for a job and feel I can stand longer or sit for long periods. And I’ve lost 15 pounds and my clothes fit better! I don’t diet but I have cut back on portions. My goal is to lose 30 pounds and walk without the walker.