After my Dad’s stroke in 2009, I went with him to his sessions with a speech-language pathologist (SLP). I wanted to go because I saw mirrored in him some of the cognitive-communication problems I had experienced since I suffered a traumatic brain injury (TBI) in a motor-vehicle crash in 1977. I wanted to know about this speech therapy thing that I had never heard about before. Could an SLP help me all these years post injury?
Rather than making an appointment, though, after a few visits I was so excited about the therapy and the willingness of the therapist to share with me that I wanted to know more. Before long, I was knee-deep in college courses and on my way to earning a master’s degree in Communication Sciences and Disorders. I wanted to be a speech therapist so that I could help people like my father and me. Most of all, I wanted to help people understand the importance of the cognitive-communication consequences of TBI so that they would not upend their lives as I had.
Unfortunately, I learned too late that SLPs did very little work with individuals like me, who had suffered a TBI but didn’t know how it affected their cognitive-communication skills until many years later. You know, I really didn’t want to go into a hospital or SNF job where I had to deal with swallowing problems. I didn’t particularly want to take a job as a school SLP. I wanted to work with people with brain injury. I found out too late that the jobs just weren’t there. Because brain injury is . . . well, misunderstood and not understood at all by many in the field. Bummer.
So I’ve found a few other part-time and freelance things to do with my SLP knowledge. Mostly, I volunteer. I have decided that the master’s degree was the therapy I didn’t get when I needed it most, years ago. It was a good thing to do for myself. I learned so much and that knowledge has improved my quality of life.
One of my volunteer and freelance “occupations” is to offer free advice to SLPs who find themselves dealing with persons with long-ago brain injury sequelea. I follow SLP Facebook group conversations and chime in whenever I can offer advice on working with patients with TBI. I’ve written a book about my experience that SLPs may find enlightening. My neurologist tells me that he likes to read books from the patients’ point of view. It helps him be a better, more empathetic doctor. I speak at gatherings of SLPs. I will be presenting at the 2016 SHAV Conference.
So this was a long-winded introduction to an interesting thing that I found today. In a newsletter from the Virginia Department of Education’s Training and Technical Assistance Center at the College of William and Mary I saw an article about student participation in IEP goal setting. The article is titled Developing Self-Determination Skills Through Student-Led IEPs. The lightbulb flashed on for me. While I believe that the best way for patients with TBI to improve is for them to be fully involved in goal setting, I had yet to come up with a method for their involvement. Could I use the rubric presented in the student-led IEP article as a model for a rubric or flow chart for SLPs to use with persons with TBI?
Areas for the SLP to assess in considering the best ways for the patient to participate in goal setting might include the patient’s understanding of services the SLP offers, his desire to be involved in the process, his knowledge of the symptoms of TBI, his awareness that he exhibits some of these consequences, the individual’s understanding of barriers or limits to therapy treatment, personal strengths that the patient brings to goal setting and more. In addition, tools like a video orientation to goal setting, as mentioned in the article, are intriguing.
Patient involvement in goal-setting is an important means to the end of rehabilitating the patient’s self-confidence and other such skills that take a beating after many untreated years. The author of the T/TAC article says, “Functional performance includes social competence, communication, personal management, behavior, and self-determination. Self-determination skills include self-awareness, self-knowledge, self-concept, self-esteem, self-efficacy, assertiveness, self-advocacy, choice making, problem solving, decision making, goal setting, goal attainment, self-observation, self-evaluation, and self-reinforcement. When students are provided with opportunities for active engagement in the IEP process, they are more likely to develop self-confidence and self-advocacy skills.”
Yes, indeed. Similarly, persons with brain injury who appear at the SLPs door years after injury also need their functional self to be rehabilitated. Participation, successful participation in their cognitive-communication rehabilitation through goal-setting can play an important part in meaningful and long-lasting recovery.