I see it in their faces…parents of teens with disabilities trying to imagine what kind of future their son or daughter is heading towards. Often it is a look of fear and one of exhaustion. Just when other parents are excitedly getting their children ready for college and to launch into adult life, we are scrambling to find out what kind of services our children are eligible for when they age out of the school system.
When young people with disabilities move from public education — a system of entitlement to adult services and a system of eligibility — it’s a huge shock to families. After sending their child to school for 6 or 7 hours every day for the last 15 years, now they have to figure out what their child is going to do each day. It’s a dilemma that makes parents lose lots of sleep and it leaves most young adults with disabilities sitting at home with nothing to do and nowhere to go.
While families do need to find out what services and supports are available in their area, there is an essential process that can help determine a better future. Known by several names, it is a person-centered approach that puts the person with a disability in the driver’s seat of their future.
Different from an IEP, which is only about public school access, it is a process that brings together the person’s circle of family, friends, peers, and providers. Together, in a facilitated and organized group meeting, they dream together to imagine a possible and positive future and create an action plan to work towards that dream.
Among the better known person-centered planning approaches are Planning Alternative Tomorrows with Hope, known as PATH (Pearpoint, O’Brien, & Forest, 1993); Making Action Plans, known as MAPS (Forest & Lusthaus, 1990); and Group Action Planning, known as GAP (Turnbull & Turnbull, 1992).
Instead of trying to access services based on what is available, it turns around everyone’s thinking and first asks, “What do you want?” Using the answers to guide all decisions in a natural, creative, and totally individualized way, they build from the person’s preferences, interests, and strengths.
Though you might think that you are already doing that through the IEP process, I can tell you from my own facilitation of the process, that it is a different process and leads to changes both for the parents who don’t have to be the ones doing everything to the person who is supported and honored for their dreams and desires, even when it doesn’t look attainable.
Changes can be both big and small. One young woman with developmental disabilities had a service dog but her parents did all the dog care. Their neighbor saw the parents picking up after the dog and wanted to say something but didn’t…until her PATH when the group starting talking about having the young woman learn to take care of her dog as part of her steps to being more independent. The neighbor was able to support that goal which was actually not as difficult as the parents thought it would be.
That same young woman also had a goal of learning to live in a condo with roommates and within a year, she was easily spending two to three nights a week there with young women who were selected from the local college speech and language department. And yes, the dog came, too, so she was responsible for all of her care.
Perhaps the most significant person-centered planning session I helped facilitate was for a 30-year-old man whose only attendees were his immediate family and the crew of paid providers who supported him in a group home and in a sheltered workshop. The care providers felt he could do much more than he was but needed the whole team to share that belief and then together work on a plan for him to continue to develop his independent skills. Last I heard he has learned to get his own breakfast and pack his lunch before we went off for his day. I believe that without the PATH, he would have continued to be unmotivated and unengaged. His chronic “learned helplessness” response would have been maintained and everyone around him would continue to have low expectations of him.
Person-centered planning is essential if we want to see our sons and daughters contribute to their community, have decent jobs, good relationships, and engaging recreation. I know I do.
Photo by University Hospitals Birmingham