Life on Wheels (4 page)

That does not have to be the case. A quadriplegic man in his 20s states:

A greater emphasis has been placed on outpatient services. Once your time as an inpatient has reached its coverage limit, then the rehab process can—in fact, must—continue by regularly returning to the rehab center for therapy and support. Outpatient services are also sometimes limited by insurance funding, so you might require yet another round of persistent advocacy.

An example is the Do It! program at the Mt. Sinai Rehabilitation Center in New York City. The program includes components such as aerobics, computer education, community integration, a psychotherapy group, a technology group, weight training, and wheelchair mobility. Not only do the staff members deliver outpatient services, but they foster continued contact with others going through the same adjustments. They provide an opportunity to address specific issues—and skills—involved in community reintegration, as well as the internal adjustments of being in the world as a person with a disability for the first time. Says Mt. Sinai’s Jim Cesario:

Do It! is an example of a day program—sometimes called a “bridge” program—where overnight stays are no longer necessary, but one spends a full day in rehab activities on an outpatient basis. The full range of services, including occupational therapy, physical therapy, psychology, and nutrition are available, all with an emphasis on community reintegration. These have become an increasingly common feature of rehab programs.

The advent of the Internet, the low price and small size of video cameras, and the presence of high-speed Internet in almost everyone’s home have fostered the growing field of telemedicine. Certain kinds of therapy and information gathering can take place through a videoconference without having to go to the rehab center at all. Some centers will send a client home with a camera and connections needed for teleconferencing in order to help manage the reentry process, to answer questions as they come up, or to assist with the continuing process of home modification.

Diagnostics can also be performed in situations such as the appearance of a pressure sore. Clearly it is far more effective to be able to see someone’s home or skin or posture in a wheelchair to help resolve such issues. This is likely to be a dramatically emerging and more common technology, although some people have had difficulty being comfortable using it.

An appropriate rehab program might not exist within range of where you live. Many people travel to major regional rehab centers, such as Craig Hospital in Denver or Shepherd Center in Atlanta. The inevitable discharge from the inpatient facility to a location too far away for a day program means that a primary focus of the inpatient rehab plan should be the design of a great home rehab program.

Community-based rehab has arisen from the short-stay issue, personified by Rehab Without Walls, a service of Gentiva Health Services, Inc. A rehab team, including many of the same types of therapists who work at the inpatient and outpatient centers, designs a continuing rehab program that can be performed at home and in the community. A therapist will visit and identify activities that can be performed in the home, as well as at a local facility, such as a local health club or university athletic center.

An increasingly common feature found at rehab centers is an apartment unit where one can spend a few nights—potentially with a family member or spouse—to closer approximate some of the issues that will arise once home. Usually very basic—with a bedroom, bathroom, living room, and kitchen— an on-site apartment is where you can regain control of how you spend your own time, prepare your own meals, choose your bedtime, get in and out of a regular bed instead of a hospital bed, and so on. There is still the security of rehab staff being at hand if needed, with emergency pull cords at hand.

Some larger centers have a separate building where someone approaching release from an inpatient facility can spend weeks. Family members can spend a significant time getting trained in what kinds of assistance they might be providing—or helping to train a hired assistant to perform.

Rehab is a very controlled environment. Everything is accessible, the floors are smooth and level, doors are wide, and so many of the elements of a daily life—from the ATM machine to bank or hotel counters that are above eye level—are completely nonexistent.

Some rehab centers have built areas that specifically simulate these elements. During the inpatient stay, it is possible to encounter common obstacles and conditions of the outside world, with the consultation of therapists and experienced chair users on hand to improve skills before discharge from the program.

Magee Rehab in Philadelphia has built such a resource on the roof of their building—which means that those who are inpatient at the facility during the winter get the extra gift of dealing with snow and slush before going home! It includes typical sidewalks—where joints are commonly raised up by tree roots—and the kind of not-so-smooth-and-level surfaces one might encounter at a door or near a parking space.

Technology has made a tremendous contribution to the range of options for people with disabilities, especially for persons with more significant disabilities such as high quadriplegia. As these technologies have become more advanced, smaller, lighter, and less expensive, rehab centers have been able to equip themselves with training rooms where clients can be exposed to options, be assessed for what works best for them according to their goals, and get trained in their use. If returning to an existing job is a priority, access to adaptive technologies in rehab can move that process along much more quickly.

Computers contribute in four areas.

Control of mobility. Power wheelchairs have evolved in quality and flexibility. Speed and acceleration can be finely controlled. Voice-controlled wheelchairs are not far off. Digital controls for vans are also making driving an option for more quadriplegics.

Control of the environment. Commercial products allow remote control of doors, lights, telephones, or almost any electrical device from the wheelchair. The remote controller might be a keypad similar to the television remote control or a puff-and-sip device for people with limited arm use.

Communication. The Internet connects people to the world. It has discussion groups and is a powerful resource and research tool. For those with limited ability to get out of the home—however temporary—the Internet can become a place of community and support. It can extend the rehab process by helping people discover possibilities they didn’t know existed.

Vocational possibilities. Research has shown that computer skills erase the pay gap that people with disabilities otherwise experience in the job market. Adaptive keyboards and voice control systems provide full computer access and thus access to jobs that have nothing to do with physical labor. Many rehab centers with fully equipped computer labs include computer training during the inpatient rehab experience.

Someone in an accident who acquires a spinal cord or brain injury will find himself in a medical facility and will generally be transferred to a rehabilitation services program. But what of people with a condition from birth, such as muscular dystrophy or spina bifida, or with a progressive condition that appears later, such as multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS)? How are they helped to adapt to a disability, particularly when the progressive nature of a condition demands continuing adjustment?

Organizations dedicated to specific disabilities sponsor services at major medical centers or sometimes finance their own facilities. The National Multiple Sclerosis Society is very active in making support available nationwide, as are the Muscular Dystrophy Association, American Syringomyelia Alliance Project, United Cerebral Palsy, and the Spina Bifida Association, among others. If you are facing a late-onset progressive disability, your doctor should refer you to such sources. However, doctors are not always well informed about what options are available for you. You might need to research such programs on your own. These groups and services may be able to help you adapt to the condition in ways that your present doctor might be unaware of, and may possibly even reduce the progression or impact of the condition by informing you of recent advances in research.

For example, Shepherd Center in Atlanta has established an MS center—one of 32 in the US—that provides both inpatient and outpatient services. Shepherd Center is a medical unit with staff members who are capable of diagnosis and treatment and who participate in research and clinical drug trials, at the option of the client. A study published in the
Archives of Physical Medicine and Rehabilitation
found clear benefits to a period of inpatient rehabilitation for people with MS. People in the group with intensive treatment learned greater degrees of adaptive skill and came out with better attitudes about their ability to function with MS than did the group who came as outpatients.
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