Life on Wheels (5 page)

People with MS or ALS typically establish a working relationship with a neurologist. However, if the neurologist is attending to many people with other conditions, she might not gain the same detailed experience as someone working in rehab who spends her time with people with a given condition. Cynthia Bishop of Shepherd’s MS center notes:

The rehab system discussed in this chapter is largely targeted to adults, many of whom already work or are educated. Many disabilities are work related; conditions such as MS typically occur in adulthood. Children with disabilities such as cerebral palsy, spina bifida, or muscular dystrophy are serviced under a different system.

With the passage of the Individuals with Disabilities Education Act in 1975, children began to be integrated into public schools, and those systems were required to provide services to those children. In effect, rehab for children gets delivered through the school system—although parents and schools sometimes find themselves in conflict over the extent and nature of these services. Physical therapists work with children with disabilities at the schools. Equipment and medical services continue to be supplied by charitable organizations.

The difficulty with this delivery system is what happens when children become adults. For some, the transition is not smooth. This man with muscular dystrophy is angry about what happened once he became an adult:

Once children with disabilities leave the school system where they were receiving medical and therapeutic services, they need to establish a relationship with physicians and facilities qualified and equipped to address their needs. New issues also appear in adulthood, such as weight gain, the start of sexual activity, living independently, driving, or alcohol use. People in such transition need a specialized set of services, and the family doctor is not in a position to provide them. As Stanford Hospital’s Jody Greenhalgh describes the transition:

Many medical professionals believe that insurance companies have gained excessive control of medical treatment. Spending limits tie the hands of physicians, whether limits are set by a health maintenance organization, private insurance, or government programs like Medicare. Medical professionals chafe at decisionmaking control being out of their hands. Insurers complain of cost pressures, rising prices, shrinking profits, and a healthcare system too expensive for many people to afford. Business owners trying to provide coverage with minimal employee contributions to premiums also add pressure to insurers. Because the insurers are demanding lower costs, we, as a result, receive less coverage. The issue is too complex to simply demonize insurers.

Alex Barchuk of the Kentfield Rehabilitation Hospital in northern California states:

Cynthia Bishop of the MS center at Atlanta’s Shepherd Center knows that inpatient stays are very effective in certain situations for people with MS:

The new insurance environment has affected a critical piece of equipment for Bob Mauro, a writer and disability activist with significant postpolio syndrome. His Medicare coverage—now administered by a private HMO—has begun to deny coverage for a second ventilator, which allows him flexible mobility by use of one by his bed and the other on his power wheelchair. More importantly, the second ventilator is a backup in case the primary ventilator breaks down—which they inevitably do.

I cannot express the terror these routine denial letters give me. I only have two ventilators, and both are vital. I must have two ventilators to stay alive! I am permanently disabled, will not get better, and will probably get worse as I age.

The services and coverage you get are increasingly defined by manuals and policies developed at hospitals and insurance offices. Managed care can lead to cookie-cutter classifications and treatments, with some danger of not seeing the case or person as a whole. According to Jody Greenhalgh:

There can be advantages to these automated, modular approaches to care. Once you have been given a disability rating, any member of your healthcare team might recognize a certain condition. By reporting it, they will initiate a trigger that automatically leads to a pathway of treatment. When these triggers and pathways are clearly defined, the doctor is spared having to diagnose and prescribe every last detail of treatment. It makes her job more efficient and can get you into the treatment process sooner, keep you from losing strength, and get you back to your life sooner. In the process, the insurer saves money, which helps.

Managed care has attempted to improve the efficiency of a medical system laden with immense demands and expense, while trying to ensure that care is appropriate for the individual. Your medical care cannot be entirely automated. There needs to be flexibility to adjust to changes.

You have arrived at rehab, which means that a group of dedicated and highly trained professionals are at your service—the rehab team. The team consists of a case manager and others in patient services, a physician, and a range of therapists, depending on your needs. The team is committed to helping you reach the highest possible level of function with your disability.

Dr. Gary Yarkony of the Rehabilitation Institute of Chicago observes:

Jody Greenhalgh of Stanford University Hospital notes that the respective roles of team members are important:

You, your family, and peer supporters will also function as part of the rehab team.

Patient services—often referred to as the social work department—will deal with finding resources, determining insurance coverage, and making sure you get all the benefits to which you are entitled. Even before you arrived, your case manager was looking into insurance policies and participating in the admissions process. Case managers deal with insurance adjusters; bureaucrats at federal, state, and local levels; charitable agencies; and the team at the facility who will serve you.

The people who do this work might have a social work degree or not. Bonnie Sims explains:

Your case manager or social worker is a key member of the team with whom you might develop a close relationship. Sandra Loyer, clinical social worker at the University of Michigan Medical Center in Ann Arbor states:

It is a challenge for a case manager or rehabilitation counselor to spend as much time as they’d like on each person’s case. With the pressure to contain costs and the complexity of the job, there is only so much time available to be a good listener. Many times case managers feel they can do their best for you by getting back on the phone to explore services and benefits to meet your needs. Bonnie Sims observes:

You might be unaware of some of the benefits you have. For example, you might have credit card insurance or a policy for your mortgage or auto loan that makes payments if you become disabled. A case manager should ask these questions and help you research all possible ways to ease your financial burden.

Unfortunately, much of the case manager’s time is spent trying to make up for coverage you don’t have. Sims notes:

Often people must take extreme measures to qualify for state Medicaid to fill the gaps left in home care or equipment. They are required to spend their savings and assets before they qualify for assistance. Basically, they become paupers to get the care they need. There is a huge array of details involved in government programs like Medicare, Medicaid, workers’ compensation, or vocational rehabilitation; in the particulars of any given policy from any of hundreds of insurers; in the offerings of charitable groups like Easter Seals or the local Rotary Club; and in programs offered by centers for independent living (CILs), and so on. Sims says:

There are many preparations to make for the day you leave rehab and return to your daily life in the outside world, a process that begins even before you arrive. Patient services might arrange transportation, set up the relationship with a home healthcare agency, or assist you with finding personal assistance services, as necessary. Sims finds that discharge is often difficult:

Take good advantage of the patient services staff. Get to know them early and learn all you can. Start planning for departure as soon as possible, and you’ll have a better chance of making a smooth transition from rehab.

The physician—most often a “physiatrist,” who is a specialist in physical medicine and rehabilitation—is the leader of the team. The physiatrist coordinates the members of the team, is responsible for maintaining clear records that everyone on the team will share and contribute to, and oversees the common strategy. The physiatrist relies on input from other team members who are spending time with you. Dr. Scott explains: