Caring for adults with developmental disabilities
Population traditionally has been underserved
Adults and adolescents with developmental disabilities are learning to become more independent through a rehabilitation program that trains them and their caregivers to use what they learn in therapy in everyday life. At the same time, HEALTHSOUTH Braintree Rehabili tation Hospital in Fairhaven, MA, has generated a new patient source through its developmental disabilities program, which operates in nearly 20 locations throughout Massachusetts and provides occupational therapy, speech therapy, physical therapy, audiology, and neuropsychology services for a population that traditionally has been underserved.
Clients are adults and adolescents with developmental disabilities such as autism, Down syndrome, mental retardation, and cerebral palsy.
Most of the clients are involved with support agencies; many are in day programs or supported employment programs. Treatment is usually funded by insurance or, in some cases, by social agencies that serve the developmental disability population. The program emphasizes short-term therapy with long-term goals that are accomplished by training caregivers and/or staff of social agencies to work with the patients.
The concept is the brainchild of Donna Centracchio, MS, CCC-SLP, director of the developmental disabilities program at Braintree. When she worked as a speech therapist at a Braintree outpatient center, Centracchio often was asked to evaluate adults with developmental disabilities for social agencies setting up service plans for clients. "I realized that a lot of these clients would benefit from rehabilitation treatment from other disciplines as well as speech therapy, but for many reasons, they were not receiving it," she explains.
Today, children with developmental disabilities get early therapeutic intervention and don't encounter the problems faced by adults and older children who didn't have the opportunity for services when they were young. "We are trying to reach the untapped potential of a previously underserved population," she says.
Because of her experience working with the population, Centracchio knew progress would be slow if the patients went through the same treatment regime as more traditional rehab patients.
"The learning style and the rate of learning for this population is typically slow and occurs only in small doses. I could potentially see a patient forever. There had to be some kind of an angle where they don't just get therapy in the clinic but it gets carried over to the day program, the community, and the home," Centracchio says.
That's when she came up with the idea of having the social service agency staff and family caregivers participate in the therapy program. Clients who participate in the program are accompanied by staff from their social agency, day program, or supported employment program and/or by their caregivers at home. "The changes were remarkable. Progress was much more rapid because of the consistency," she says.
Determine needs first
Patients usually are referred by social agen cies but need a primary care physician to prescribe therapy services. Each discipline providing therapy does a thorough patient evaluation, determining the need for services and established functional goals. Some patients need treatment from only one discipline. Others may require a multidisciplinary approach.
Therapists set functional goals to help with safety and health issues and to increase their independence. For instance, goals may including learning to transfer safely from wheelchair to chair, fix lunch, or communicate a need. "The goals we work on are long-term, but we expect that we can establish a good home program and appropriate staff training so that the goals can be addressed after the treatment period," Centracchio says.
The clients and their support people attend one-hour therapy sessions twice a week. The average length of therapy is about three months.
Getting staff from the social agencies to participate in therapy sometimes requires creative sched uling. However, since clients need transportation to the outpatient centers, the agency often can arrange for staff to remain with clients during treatment. The centers work with the agencies to schedule several clients with the same needs at the same time, which allows for some group therapy to supplement individual therapy.
"The groups are great. They help establish peer relationships. It becomes a community event to come to the clinic," she says. Groups include basic communication skills, health and wellness, exercise and stretching, and safety awareness.
Clinicians who work with the developmental disability population attend a three-hour training program that includes assessment and treatment procedures, what kind of skill levels to expect, and strategies for working with the population. Centracchio collaborated with physical therapists and occupational therapists to develop a training manual for clinicians.
Getting the word out
Before the program started a year ago, she sent flyers to social agencies, but most of the marketing occurred through word of mouth. Also, Brain tree sponsored a conference last October on serv ing the developmentally disabled population, which attracted social service agencies from throug hout the state.
"That conference gave us a foot in the door. We introduced the new concept, discussed what the various disciplines could do for these clients, and got feedback from the agencies," she says.
Braintree treats about 30 clients at various outpatient sites. The hospital is opening a clinic at a sheltered workshop in Worcester and already has received 50 referrals for that program. The Worces ter clinic will be open to the public as well as serving the developmental disabilities population.
"It's an ideal situation. The individuals can go to the clinic for therapy with the staff that's already in the building," Centracchio says.
Because there are few standardized outcomes tools for developmental disabilities beyond the early childhood years, Centracchio is working on developing an outcomes rating and a data base to track outcomes. She has developed five-point severity rating scales that allow clinicians to measure progress according to the number of prompts a client needs to complete a task.
The Braintree staff do ratings during preadmission evaluations and at discharge. Social agency staff and caregivers also are asked to fill out questionnaires to rate the clients' independence levels before therapy and after discharge.
[Donna Centracchio can be reached at (508) 990-0606.]
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