By Joanne Bauman
As he signed the Americans with Disabilities Act in 1990, President George H. W. Bush said that the law would "ensure that people with disabilities are given the basic guarantees . . . freedom of choice, control of their lives, the opportunity to blend fully and equally into the . . . mosaic of the American mainstream." On the 12th anniversary of the ADA, President George W. Bush announced that the government would be making changes to Medicare rules to save money and curtail fraud. New rules would require all persons who receive in-home assistance to be "homebound". The rule stipulates that a homebound person is one who has "a normal inability to leave home" where "leaving home requires a considerable and taxing effort by the individual." When a person does venture out, it must be "infrequent or of relatively short duration."
The "homebound" rule has provided governmental agencies and home health providers with the excuse to terminate service to those with the severest disabilities who generally need the most assistance. David Jayne, who has Lou Gehrig's disease, was initially dropped from coverage for attending a funeral. He wasn't aware that his home health service would be terminated for leaving the home, with the exception of doctors' visits or adult day care. Jayne's psychologist filed paperwork for the discharge process for homebound violations. Newspaper coverage of Jayne's case and help from Georgia Advocacy Office lawyers won him reinstatement.
Jayne said he grew bitter being "forced under house arrest and missing out on my children's activities." "I didn't know the federal government was into rationing freedom," he said. Jayne, once an avid hunter, fisherman and outdoorsman, enjoys his children's sporting events and vacations. "I know going public with my activities would cause me to be discharged again," he says of his lobbying and advocacy, "but I wanted this punitive restriction exposed." Jayne had services cut again for having the audacity to attend a football game and speaking out on disability awareness. Unlike others who have been cut from services, Jayne has been successful in having his services restored.
In July 2002, President Bush announced a very limited policy modification so that people considered "homebound" can "occasionally take part in their communities, without fear of losing their benefits." This new language is "a step backwards," according to Rep. Ed Markey (D-Mass.), co-sponsor of the Homebound Clarification Act (H.R. 1490) to eliminate restrictions. David Moulton, Markey's aide, says Markey "vigorously objected to this language" because it appears to narrow permissible absences from the home to "things that take less than an hour."
The homebound regulation was created at a time when people with many disabilities really couldn't leave the home. Technology, advancements and ADA make it possible for people with disabilities to be active, raise children, live life, and participate in fitness and recreation opportunities.
The homebound rule puts a real damper on people with disabilities even attempting to participate in exercise or recreation. The body cannot sustain inactivity. Does the phrase "use it or lose it" come to mind? Studies demonstrate that individuals who are on a few weeks of bed rest have decreased bone mineral content, lower heart function, higher risk of blood clots, pulmonary dysfunction, and many other health problems. Inactivity results in muscle wasting, loss of bone mineral content, decreased heart strength, decreased mental and physical vigor, and increased resistance to insulin leading to diabetes. Worldwide, obesity and sedentary lifestyles are fueling what one researcher called "a catastrophe to come" in The Wall Street Journal.
Encouraging Americans to participate in fitness and exercise (National Fitness Day, July 2002) while at the same time punishing persons with disabilities unless they stay at home sends a mixed message. Is it implied that the need for health and fitness only applies to able-bodied Americans? After all, the stereotype of persons with disabilities is that of the sick invalid, not of anyone fit and healthy. It also penalizes anyone with the desire to maintain health and abilities. Someone with MS could lose home health services for having the hubris to pursue yoga or tai chi classes to maintain joint flexibility.
Exercise for persons with cerebral palsy, muscular dystrophy, ALS, and multiple sclerosis can increase energy, improve balance, manage spasticity, decrease muscle atrophy, prevent contractures, maintain respiratory capacity, and maintain or improve strength for activities of daily living. Yet, if you are restricted by the homebound rule, to go swimming, participate in a camp or adaptive recreation program, or go someplace to use equipment such as hand ergometers for health benefits is prohibited.
Quite possibly, if people were "allowed" to get out and swim or go to use adaptive equipment for fitness, the government could allocate a little less toward medical expenditures for secondary conditions, such as obesity, high blood pressure, high cholesterol, osteoporosis, cardiovascular disease, and pain management.
How did ADA's "the opportunity to blend fully and equally into the . . . mosaic of the American mainstream," get translated into "occasionally?" Here's some food for thought. Medicare rules allow for unlimited trips outside the home to attend religious services. Although you are seemingly encouraged to do so, don't be stuck at home to eat, drink, watch TV, play computer games, surf the Internet, or cruise the chat rooms. Maybe your form of spirituality and getting in touch with your Creator is fishing or camping outdoors. Maybe it's riding a StimMaster. Maybe it's lying in a canoe and soaking up sun while you float down the river. Plant some flowers and tend a garden. Participate in nothing short of a miracle and get out and exercise religiously.