Tina+Doyle

__**Self-Advocacy and Person Centered Planning**__ By: Tina Doyle
 * Module 6 Wiki Post**



"Nothing about Us, Without Us" Whether a person with a disability is transitioning from school to work or from their parents home to independent living, it is clear that one’s ability to communicate their wants, needs and desires in order for these to be met is critical. However, traditionally there have always been “experts” in the lives of persons with disabilities to speak for them. This has been especially true for persons with intellectual disabilities. The video Speaking for Ourselves demonstrates the importance of ensuring that persons with disabilities have a voice in the decisions that impact their lives, including people with intellectual disabilities.

Prior to working at the university I worked with adults with intellectual disabilities who were Deaf or hard-of-hearing. Many of the adults had limited communication skills (verbal and/or sign language). The home I worked at was very structured and the clients had limited freedom to decide what they could do with their time. The staff cared about the clients but the idea of self-determination, self-advocacy or person centered planning was not central to the work at that time (early 90's).

One adult in particular came to mind when watching //Speaking for Ourselves//. He was a young adult with Down Syndrome. He could not read or write and had just transitioned out of high school. He had been on a waitlist for a day program for years. The hope was he would have a place to go and work after high school but the wait was long and there was no place for him when he graduated. While waiting to be placed, I would work on skill development with him. Over time I felt that the day-to-day routine appeared monotonous to him. He was not motivated to start or complete any of the tasks he was given and would barely interact with anyone at the home.

Since he had been unable to articulate his interests I thought I would try something different. I brought in music and musical instruments (e.g., maracas). While many clients were Deaf, people who are Deaf can still feel the beat of the music. This young man in particular was hard of hearing and could hear the music. Once I introduced music to him he blossomed. His communication skills dramatically improved and he began to interact with others more. Originally I put away the music each night but he came everyday and told me that he wanted the music. I decided to leave everything out because I wanted him to have the freedom to stop asking. But what I especially enjoyed was that he took control of his life, as much as he could, and began, for the first time, telling me and the other staff what he wanted to be doing with his time. He had never said what he wanted to do before since he was used to the routine. His ability to start to self-advocate for himself changed the way we began working with him and the way he began to interact with others. All of this just from giving him some instruments and music to listen to!

Over the years the experience with this young man, and others with disabilities, has impacted how I do my work. Central to everything we do for, and with, people with disabilities should always include and value their voice. Person centered planning is a process by which this is finally happening.