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Winter 2004 Table of Contents
Versión Español de este artículo (Spanish Version)
By Edgenie Bellah, Family Support, Texas Deafblind Project
Abstract: This article provides a brief overview of person-centered planning and shares three parents' stories about how they are using the tool to plan for their child's future.
Key word: blind, deafblind, family, person-centered planning, career education
When children have disabilities such as deafblindness, sometimes it is hard to envision their long-term future. Having information and connections to individuals who can serve as role models is helpful, but ultimately each family must create a personal dream for the future that is based on their loved-one's interests, talents and available community supports. There are a number of tools that have been developed to help families and significant people influencing the individual's life create a positive vision for the future. One such tool is person-centered planning as process often referred to as mapping because it creates visual images to reflect the person's life experience and path.
On September 18-20, 2003, I joined three other parents from Texas in Tampa, Florida for the annual parent workshop sponsored by The National Technical Assistance Consortium for Children and Young Adults who are Deaf-Blind (NTAC) and National Family Association for Deaf-Blind (NFADB). This year's training focused on person-centered planning as a tool to help parents plan for all the transitions their child with deaf-blindness might experience from birth through adulthood. Person-centered planning is not new. As Keith Fansler, one of the parents from Texas, pointed out to me in a later conversation, parents create maps for all of their children's futures.
According to Dr. Beth Mount (1991), person-centered planning:
While there is much written about the benefits of person-centered planning, the most meaningful way to gain a true picture is through the words of parents who have already experienced this process. The first story below is written by Corry Hill, who is the Family Specialist for the Utah Deafblind Project and NFADB Region 8 Regional Director. Corry shared her story, written in 1994 after her family's initial experience, at the kickoff of the training. Her story inspired me to ask the parents from Texas who went through the training to share their experiences. Two of these parents are Keith Fansler of Amarillo and Melanie Knapp of Missouri City.
I am the mother of an adorable six-year-old daughter, Laurie Lynn Hill, who just so happens to have a dual sensory impairment and is multiply handicapped. Before I had experiences with mapping, I would introduce Laurie as someone who couldn't talk, walk, eat and who couldn't hear or see very well. Futures Planning helped everyone who works with Laurie and myself view her as a whole person with strengths as well as weaknesses.
Those people who have worked with Laurie have always been good, but prior to Personal Futures Planning (Maps), it felt like a disjointed effort. Each person was concentrating on what Laurie couldn't do or what she needed to learn in their own specific fields. For example, the OT's goals were written before she had met Laurie, written directly from a text book, not changed for two years, and not incorporated with anything else in Laurie's school day.
We were first introduced to futures planning at a deaf-blind conference in 1992. Our family attended a session learning about Maps and then the conference broke into small groups to actually make some maps. We had the privilege of using Laurie as the example. In attendance at that group were several people who worked with Laurie, both directly and indirectly, including her teacher, intervener and several service providers. We began by creating a Background Map. Laurie's intervener, her father and I were the major contributors because we had known her all her life. By the time that map was finished I felt the group begin to have some cohesiveness. We were at a common starting point. Everyone in the room knew of Laurie's struggle to live and we all looked at her with the "same eyes." While creating the Relationship Map we were all pleased to discover the many people who worked with and cared for Laurie. I was especially pleased while the Preferences Map was being created to see everyone giving input. They knew Laurie better than I thought they did, and we came up with even more "things that work" than "things that don't." Service providers wrote down specific ideas to try that they didn't know about before, things that someone else had success with. The Dream for the Future Map was the hardest for me to work on. It is difficult for me to dream for an uncertain future. Everyone in the room was very encouraging and urged us to dream high. We were very proud of our accomplishments as a group. Three years later a speech therapist commented that mapping session helped her greatly and was the best thing she had ever seen. Even though Laurie's maps have been updated many times, I still have those original maps and cherish them.
After the mapping session, I noticed a change in all those who had been part of the process. Fences were down - it was no longer us against them, but a team with everybody an equal partner. The attitude toward Laurie was positive. That is, everyone treating her as a whole person and sharing ideas about how to achieve goals together.
The Fansler family has been in the deafblind business going on sixteen years now. My wife, Leslie, and I have been together for a little more than seventeen years. We have two sons. Our oldest son, Chance, is a junior in high school. Chance is a ranked fencer and on the varsity wrestling team. Preston, our youngest son, was born blind and is now carrying the deafblind label. Labels — you've got to love them. Preston loves the water and is a gold medallist bowler in the Special Olympics. He has several jobs, one of which requires him to swim for his paycheck. We are longtime members of Deafblind Multihandicapped Association of Texas (DBMAT) and NFADB. For several years, I served as Member-At-Large and Vice-President of DBMAT. I also have attended the NTAC-NFADB parent trainings since one of the earliest trainings in St. Louis.
This NTAC-NFADB parent training was a little different than the ones I attended in the past. They had me moderate our group's mapping process. I had been to a session on mapping before, but we have never done it for our son, Preston. It was amazing to see how much information our group came up with for the lady who was picked to have her child be the focus of our mapping training. This was the first time our group had met. We were total strangers. I loved the experience I had with moderating. It let me see how easy it really is to build a program on a child's strengths and not his/her weaknesses. Our group built a program for a total stranger based on her likes and dislikes. Just think of what you can do for your family member or even somebody you know. Being the moderator gave me the confidence I need to do a mapping on my son. If you think about it, we all do person-centered planning for ourselves. Leslie and I have done person-centered planning with our oldest son, Chance. To an extent, we have done it with Preston. We try to find jobs and activities that coincide with what he likes, not with things he does not like.
The only problem I see with mapping is getting everybody together at the same time, so it might take two or maybe more sessions. You might want to break it down into groups, like family and friends, professionals, church and community. Getting your person-centered planning ideas into the IEP can be a challenge, but it is a must. I hope to be starting a mapping process on Preston soon because I learned it is never too early or too late to do mapping. My advice to all parents is to map throughout your child's life so you will know where you have been and where you are going.
Christian was born in July of 1980, the second son to Gary and myself. We were told we might have a premature birth, but never in my wildest nightmares were we prepared for what was to come. After his birth at 28 weeks gestation, Christian spent his first two years in the hospital. I can't even remember how many surgeries he had or how many times we almost lost him. As a result of his prematurity and long hospitalization, Christian had numerous medical difficulties. He is now 23 years old. He is deafblind. He is incredibly strong, and has a great sense of humor (Knapp humor). He also is a really good-looking guy. Christian has a wonderful big brother, Landon...and now a sister-in-law, Christi. Christian thinks Christi is HIS girlfriend. I am the Momma, and Gary is Dad. We have had tremendous family support over the years. Christian is in his last year of school. He has made AMAZING progress over the last three years. He understands a lot of sign language. We have had many years of incredible support from his educational team.
A few years ago, David Wiley and Craig Axelrod came to our home. We went through the person-centered planning process for Christian then. It was just the four of us that night. So many events have taken place in our lives and Christian's life since then.
What did I learn from my training in Tampa? Well, I volunteered Christian to be the focus person. While I was quite proud of myself, I realized during the process that since I was the only one that knew Christian, it was a very subjective mapping. The training did give me the tools to take on a better, less subjective mapping, and it was up to me to make it happen for real.
Upon my return home, I was determined to have a person-centered planning party. Gary and I were happy with how many people were able to make it. I invited the family that was in town: Landon and Christi, Mimi, Aunt Cheryl. A few members of my family were unable to come for the first meeting, but hopefully will jump on the wagon next time. Chantel Simon (Christian's caregiver) was there as was Ann Bielert (his intervener), Mrs. Parker (his classroom teacher), and Gloria Vaughn (his vision teacher through the years). I was ecstatic that Craig Axelrod, David Wiley, and Edgenie Bellah from Texas Deafblind Outreach at TSBVI wanted to help.
I think the mapping process went great. We had so much input from everyone, not just from me. The process was also therapeutic. There were a few tears and a lot of laughs. I definitely feel like the mapping was a success.
What came out of our first meeting is a plan. We have looked at what Christian would want, what he would want to do as work, where he would want to spend his time, and who he would like to spend it with. We have determined as a team what will work for him and what won't work. We have already put our plan into action. Christian now owns a small vending machine and has started training with it at school to learn how to stock it. When he graduates, we will move this one to his Dad's office. Who knows? He may become quite the vending machine entrepreneur!
These stories are far from ending. Families will continue to build upon their initial dream through ongoing mapping. Just like you and I, the dream is ever evolving in response to our actual experiences and changing needs and interests. I want to thank each of the parents for sharing their personal stories about their recent learning experiences and for allowing me to tag along for the wonderful journey they are on with their families.
For a more detailed description of planning for adult life for individuals with multiple disabilities such as deafblindness, be sure to read the article, When Planning for Adult Life, How is a "Life-style" Different than a "Program"? by David Wiley on page 29. Families are also welcome to call the Texas Outreach program for assistance in developing a person-centered plan. Kate Moss and David Wiley have written A Brief Guide to Personal Futures Planning, Organizing Your Community to Envision and Build a Desirable Future With You: a paper that provides an overview and step-by-step directions for the process. The Outreach Program is also available to help with individual plans.
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