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Unfortunately, during the past year, NAA has
received considerably more requests for help from families
who feel that their third-party reimbursement for speech-language
therapy has been ended long before the potential for
recovery of communication skills had been reached. It
is a fact that third-party reimbursement is paying for
fewer healthcare services and for shorter periods of
treatment. Although persons with aphasia can continue
to acquire communication skills for decades, third-party
reimbursement for individual speech-language therapy
is usually available only for the first few months after
a person acquires aphasia.
NAA sought to explore the alternatives open to families
at the end of third-party reimbursement for speech-language
pathology services. We thank the four speech-language
pathologists who responded to NAA's appeal to discuss
ways for families to cope.
Each of the four participants in the conversation
which follows has treated hundreds of clients with aphasia,
trained student clinicians, conducted research and contributed
to textbooks and/or journals on the topic of aphasia.
They included Ann Oehring. Director, Northwestern University's
Speech and Language Clinic in Chicago, Illinois; Jackie
Hinckley, Head of Aphasia Services, University of Michigan,
Ann Arbor, Michigan; Anita Halper, Speech-Language Pathologist
at the Rehabilitation Institute of Chicago, and Audrey
Holland, Ph.D., who is Professor and Head, Department
of Speech and Hearing Sciences, at the University of
Arizona in Tucson.
NAA: What do you tell families when they tell you that they have to end speech therapy treatment because they have no more third part reimbursement?
Holland: I always tell families that it is very important for persons with aphasia and their families to be a part of an ongoing communication group-maybe even more important than continuing individual therapy-since a group provides a means for conversation and keeps you in touch with people who understand what you're going through. Groups help persons with aphasia learn from the experiences of others. It is a source of real satisfaction for group members to be able to help each other. At our center in Tucson, we have groups for persons with aphasia and other groups for family members. They each have their own problems to cope with and having separate groups gives them the time and space they need to explore those.
Halper: Groups are very important. However, if individuals want to continue in individual therapy but don't have the financial resources to work one-to-one with a therapist, they can seek out a university-run clinic. Speech-language pathology students need experiences working with adults with aphasia in their training. This often works out well for the client. A licensed speech-language pathologist from the university's faculty supervises student clinicians in their preparation and delivery of therapy. Most university clinics have to charge something for their services, but it is usually less than for other individual therapy. There may also be on-going research projects that a person with aphasia can volunteer for. It isn't always the case that participating in a research project is going to help your communication skills, so you need to be clear about the goals of a research project before you get your hopes up.
Hinckley: Unfortunately, I don't think that most families anticipate their next move when the end of their reimbursement for individual therapy is approaching. A lot more could be accomplished if they would ask for help while they still have access to a speech-language pathologist who is familiar with them.
NAA: How can speech-language pathologists help families prepare for the end of formal therapy?
Hinckley: The family needs to have an accurate description of what the person with aphasia may be able to do in the future. This description is a critical first step toward three very important ways that the speech-language pathologist can help the whole family get oriented toward a new life. First, families can anticipate activities they can still share. Persons with aphasia should be encouraged to maintain a role in financial and other planning. Think about social and family events, and hobbies that the family can share. This collective planning activity will help families think about how their lives together will change and how it will stay the same. Secondly, the speech-language pathologist should provide the family with specific suggestions for maintaining active and stimulating communication among family members, Whatever methods are appropriate for the person with aphasia should be explored. And third, the family should request recommendations for home practice if the clinician has not already offered these.
Holland: It is important to point out that working at home with spouses is not always a good solution. If a spouse feels pressured into becoming a substitute speech therapist, this is an added burden that can have negative consequences for the relationship. Another example might be that accepting a "learner" role might be very uncomfortable for some people with aphasia. Aphasia can put a lot of pressure on a relationship. Roles may change overnight, especially if the person with aphasia cannot return to work.
NAA: What are the alternatives?
Holland: Getting friends or neighbors or even another family member to work under the direction of a professional speech pathologist. But also remember it is important for a person with aphasia to assume some responsibility for his or her own recovery. Doing some tough things on your own is probably more gratifying than doing them under someone else's direction.
Oehring: The "consulting" role for the speech-language pathologist is something that I think we will see a lot more of in the coming decade.
NAA: What do you mean by a "consulting role"?
Oehring: For months and years after someone acquires aphasia, their abilities can continue to change if they keep working. It makes sense that there will be changes in what will help a person with aphasia the most in their work at home. The fact that hospital stays are so short now makes the problem worse. Out of necessity, patients may be tested for language skills only a few hours or days after their stroke or injury. Their abilities are very different from hour to hour and day to day when their injury is still so recent. It is very likely that their ability to communicate will be very different two to six months later, Unfortunately, very few families can afford to continue individual therapy for longer than the few weeks that insurance covers. In a consulting relationship, the family works together with a speech-language pathologist. First, an evaluation is done. The family is coached in ways to maximize communication based on the evaluation. The speech-language pathologist and the family work together to identify goals and a specific plan of action and they agree on dates in the future - maybe six to twelve months later - when they will all meet again to review progress. Then they plan for the next cycle of six to twelve months.
NAA: How does this type of consulting interaction wind up being effective for the client?
Oehring: Like any system, you have to work at it. No amount of diagnostic testing is going to be useful if it doesn't lead to some appropriate work at home. The important thing is to define a set of meaningful goals, get a support system in place and follow the diagnostic visits with the speech-language pathologist with a well-organized plan of appropriate practice and support at home.
NAA: What about work with computers? Several families have asked us if practice on the computer will help.
Hinckley: The research on computer use is in many ways similar to what we know about working at home with another person. The work needs to give you practice in the skills that you need the most. For example, if your main problem is comprehension of spoken language, and you are practicing naming on the computer, there is no reason to believe that this is going to be helpful. But keep in mind that computers can do a lot of things besides provide drill and practice on language skills. They can be used to produce letters that are much more legible than anything written in a left-handed script. They are fun and motivating and they can help with scheduling, and staying in touch with other people who have similar interests by using e-mail and the Internet. And for people who need to change jobs, computers can be a way to train for new job-related skills.
NAA: What else should families consider?
Hinckley: It is important to change and adjust focus. The end of third party reimbursement may be a time to shift your focus as a family from medical and therapy issues back to yourselves as people who are interested in the world and each other. However, aphasia will always be a part of that existence. An Aphasia Community Group may be a place to receive the social support you need to pursue this change of focus. Staying in touch with others, through the NAA's Pen Pals or some other means, will be important.
Holland: People with aphasia can do many things for themselves, as well, and my guess is that these are the most beneficial. I have already mentioned assuming some responsibility for one's home therapy. But people with aphasia can do more than that, One of the best ways to be a useful member of society is to help others. Experienced persons with aphasia can help newer ones by sharing their stories and their experiences. People from our aphasia group have started visitation to newly aphasic people. They have prepared guidelines for coping that express their unique understanding of aphasia, which they share. Spouse groups are preparing similar guidelines for family members. Perhaps even more exciting than these developments, though, is that some of the people with aphasia who attend our groups have successfully formed their own support groups."
Top Four Suggestions for coping with the end of third party reimbursement for speech-language pathology services.
- Stay in touch with other people who are living with aphasia. Become a member of an Aphasia Community Group and/or find contacts through NAA's online support community.
- Locate a university-run speech-language pathology clinic. They may offer low-cost therapy in exchange for helping them train student clinicians. They may also have research projects that need persons with aphasia to participate. Call the American Speech Language and Hearing Association (ASHA) Resource Information Line at 800-638-8255 and ask for clinics in your area that have graduate student training programs.
- Before the end of therapy, enlist the aid of your speech-language pathologist in training family members to maximize communication skills and anticipate an at-home action plan.
- Engage a speech-language pathologist on a "consulting" basis for periodic visits to a) monitor changing communication skills, b) assist in the formulation of appropriate goals for at-home work, and c) guide you in selection of appropriate materials to support goals.
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