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A CLIENT-CENTERED APPROACH

A phone grip, which attaches with a Velcro strip, helps Rios hold the receiver despite the weakness in her grasp.

Gillen's center, like many others, emphasizes a client-centered approach, in which clients tell therapists what their goals are and they set about reaching them together.

"We don't let the diagnosis per se dictate the treatment. We encourage the client or the family or caregiver to identify appropriate goals. We do that to narrow the focus of treatment and to empower individuals right away, so that we're not dictating what we think is appropriate for them."

Gillen says, "People think of basic self-care as a major focus of occupational therapy, and it is for some patients who are interested in those types of things." But, he says, not everyone has self-care at the top of the list of OT goals.

He cites the example of a 62-year-old Columbia University professor with amyotrophic lateral sclerosis (Lou Gehrig's disease, a paralyzing neurologic disorder) whose main goals were different. The client was satisfied with his home health aide's assistance with his personal needs and wanted to spend his limited energies pursuing the "love of his life," surfing the Internet, participating in online chat groups and corresponding using e-mail, Gillen recalls. "So that's what we changed our focus to -- ways that he could use his minimal strength to access his computer independently."

Rowley says her team at Rancho likewise uses a client-centered, or family-centered, method. While the therapist may think it's important for a young person to feed or dress himself, that may not be practical in the family's hierarchy of needs, and that has to be taken into account, she says.

"Even though a client may have been seeing an occupational therapist for six months and been issued dressing sticks and stocking aids so that they can be independent with dressing, the reality of the situation is that Mom and Dad work, there are two other kids in the family, and they get up in the morning and they've got to get out of the house. They don't have time to allow that person to dress. It may not be a priority in some families, and that's OK with me."

Rowley tries to reach a compromise with families in such circumstances, such as allowing the client to dress independently on weekends so the skill can be mastered for later use.

CHANGING THE ENVIRONMENT

Occupational therapy doesn't just focus on making an individual adapt to his environment, Gillen explains. It can also mean adapting the environment to the individual.

Acting as an advocate for the person whose job performance requires special modifications is "a major part of what we do," Gillen says, "using the ADA [Americans with Disabilities Act] as backup."

Inspecting work sites "for promotion of health and prevention of injury" is part of an occupational therapist's practice, Gillen says.

For someone with a neuromuscular disorder, the intervention could go something like this: "Let's say somebody is developing proximal weakness and needs modifications for their phone," Gillen offers. "Maybe they need a certain type of headset because they can't use a receiver anymore and a certain type of keyboard support so they can support their arms while typing.

"We'll go in, evaluate the work site, pick appropriate equipment, evaluate the client with the equipment, make sure that it's correct and then go in with a written proposal to the employer in terms of where this is available, pricing and what it will do for the client in terms of performance."

WHAT ABOUT COSTS?

Since 1990, the Americans with Disabilities Act has helped many disabled Americans stay in or join the work force, while the Individuals with Disabilities Education Act (first passed in 1975 and amended since) has similarly helped many children and young adults with disabilities stay in or enter school programs.

An occupational therapist and a client practice shopping in a mock grocery store in the OT Department at New York Presbyterian Hospital, part of Columbia-Presbyterian Medical Center in New York. The store is part of an Environment, supplied by Habitat Inc., of Tempe, Ariz.

These two key pieces of legislation have helped thousands defray the costs of interventions necessary for work or school, some of which fall within the scope of occupational therapy.

The federal health insurance programs Medicare and Medicaid will often cover occupational therapy sessions, usually on an outpatient basis, and there are several state programs that can help. (Check with local resources or the AOTA for state-specific assistance.)

Private insurance often covers occupational therapy sessions, although there are restrictions. Health maintenance organizations (HMOs) don't routinely exclude OT either.

"In managed care plans," Gillen says, "if OT is prescribed by a physician, what we usually need to do is an evaluation and a letter of justification to the company of what our final outcomes will be. Usually we will get some approval."

If all else fails, Gillen says, occupational therapy is usually not prohibitively expensive to pay for out of pocket and treatment doesn't last forever. With neuromuscular disorders, he says, "we're looking at very specific things. These are not people you're going to keep on long programs. We're going to meet specific goals, leave and then maybe touch base with the patient now and then to see how things are going. Is the status changing? Do they need more help from us?"

In New York, where Gillen practices, an occupational therapy evaluation costs about $100, and a treatment session, usually an hour, ranges from $75 to $125.

EVERYDAY LIVING

Getting out of an automobile takes practice. The taxi is also part of the Easy Street Environment® at New York Presbyterian.

Rosalba Rios now uses occupational therapy only on an as-needed basis, such as when she recently acquired her wrist support. She says the therapy has always helped her with everyday living, including cooking, painting and writing.

"I think if you have a neuromuscular disease, since it's progressive, it's real important that you do go to an occupational therapist," Rios says, "because they'll tell you ways of doing things. It's very beneficial."

Rios now works with the disability community through her position in the disabilities office of her university, but, she says, she doesn't want to stay "in a bubble" or be classified as a "disabled artist." For her, "the best way to help our disability community is being out there in the mainstream."

Occupational and physical therapy, along with evolving technology, have helped her get there and will help her stay there. 

Resources

Occupational and physical therapists are in an excellent position to make recommendations about adapting to daily life. You can reach one through any of the MDA clinics or ALS centers.

Additional resources include:

American Occupational Therapy Association (AOTA)
(301) 652-2682
www.aota.org (with list of state associations)

Americans with Disabilities Act information
(800) 514-0301
www.usdoj.gov/crt/ada/adahom1.htm

Individuals with Disabilities Education Act information
www.ed.gov/offices/OSERS/IDEA/

Quest articles (available at www.mda.org)

• Vol. 2, no. 3, 1995: "Technology Transforms the Workplace"
  
  
• Vol. 4, no. 5, 1997: "Within Reason: Reasonable Accommodations Are Attainable When Employer and Employee Work Together"
  
  
• Vol. 6, no. 1, 1999: "Who's Who on the Health Care Team and How to Be Its Captain"
  
  
• The ALS Newsletter (available at www.mda.org)
  
  
• Vol. 4, no. 4, 1999: "Making the Most of Your MDA Clinic Experience: Have You Tried Occupational Therapy?"