Skills for the job of living
This article, the first of a two-part series, focuses on occupational therapy for adults, in which the emphasis is on entry into or return to work, and social and self-care activities. Part 2 will discuss occupational and related therapies for children, in which the emphasis is on school, play and promoting physical and psychological development.
|A wrist support (splint), customized by the OT Department at Rancho Los Amigos National Medical Center in Downey, Calif., helps Rosalba Rios to paint.|
Rosalba Rios, 22, has a lot in common with other college students. As a senior art major at Biola University in La Mirada, Calif., Rios has to get to her classes, get to her part-time job in the disabilities office, prepare for art shows, do homework and research papers, and maintain relationships with friends and family.
Rios does it all, despite obstacles most students don't face: She has Dejerine-Sottas disease, a disorder of the nervous system that keeps signals for movement and sensation from traveling along her nerves as quickly as they should.
As a result, she's had to use a wheelchair since she was 7 (she now has a power chair), had surgery to stabilize spinal curvature at age 10 and has nearly lost the use of both hands.
As a child, she received various kinds of therapies through the public schools in California, and eventually found her way to Rancho Los Amigos National Medical Center, a major rehabilitation center in Downey, where Rios also attends the MDA clinic.
Over the years, working with occupational therapist Lori Rowley and others, Rios has received instruction and devices that have helped her manage her life. Her most recent acquisition is a wrist support (often called a splint) that helps her with painting and other hand activities. She can still use her right hand to "squeeze a little," which makes the splint particularly useful.
She's also received reaching devices ("reachers"), handles and a special knife. "If your hands aren't working properly, equipment — even something as simple as a new cutting knife — can help," Rios says. "There are special types of utensils you can use."
Driving is another part of Rancho's OT program, but, unfortunately, despite her efforts, Rios' disability didn't allow her to achieve this skill. She now rides as a passenger in her family's adapted van.
Occupational therapy has roots that reach back to the 19th century and brings to mind images that differ depending on a person's age and experience.
|Rios uses a computer (with a velcro cuff for the pencil on the other hand) while occupational therapist Lori Rowley at Rancho stands by.|
Basket weaving and other crafts — now called diversional activities by therapists — are less common today than they once were in OT settings, having drifted into the domains of psychotherapists and recreation specialists.
And specific vocational training activities, which in earlier times played a larger role in the profession's scope of practice, have likewise nearly disappeared and entered the realm of state vocational rehabilitation departments.
So where does that leave occupational therapy?
Some experts define the field as promoting virtually any purposeful or meaningful activity.
If that sounds a little broad to be useful, the American Occupational Therapy Association defines occupational therapy as "the therapeutic use of self-care, work/productive activities, and play/leisure activities to increase independent function, enhance development, and prevent disability."
AOTA goes on to say that OT "includes adapting tasks and the environment to maximize independence and quality of life. The term 'occupation' refers to activities that are meaningful to the individual within the environments in which the person lives and functions."
AOTA's motto sums up OT neatly as "skills for the job of living."
Glen Gillen is a senior occupational therapist and clinical instructor in occupational therapy at Columbia-Presbyterian Medical Center in New York who sees adult clients with neuromuscular disorders. The philosophy of OT stays the same in different settings and age groups, he says, but the interventions and specific goals are different. In all cases, improving function is the goal, with "function" being the key word.
He puts occupational therapy in a framework devised by the World Health Organization. In 1980, WHO published a model in which "impairment" is defined as a dysfunction at the level of an organ, such as a limb; a "disability" is a functional limitation at the level of the person, caused by an impairment; and "handicap" is a disadvantage in role performance at the level of interaction with society.
disturbance at level of organ or limb
disturbance in function at level of person
disturbance in the relationship between person and society as result of disability
The above is adapted from the World Health Organization's International Classification of Impairments, Disabilities and Handicaps, first published by WHO in 1980. Occupational therapy is primarily concerned with the middle level of dysfunction, the disability level, although it can move into the related areas of impairment and handicap.
Gillen's practice centers mostly on the "disability" part of the model, with other professionals taking the territories that surround it — physical therapy at the impairment level and social work and psychotherapy at the handicap level.
When asked about the differences between physical and occupational therapy, he answers this way: "If I think about physical therapy, I'm thinking more in terms of mobility, flexibility, strength. And when I'm thinking about occupational therapy, I think of return to functional activity performance."
Rowley answers the same question by saying: "I always qualify that with regard to the facility that I work at. Depending upon the facility, OTs and PTs may have different roles. At our facility, physical therapy works primarily with mobility, with how is somebody going to move around." At Rancho, "physical therapy works a lot with the legs." Occupational therapy is "to help you to be as independent as you can be with things that you want to do every day."
|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.
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."
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.
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.
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.
American Occupational Therapy Association (AOTA)
www.aota.org (with list of state associations)
Americans with Disabilities Act information
Individuals with Disabilities Education Act information