Phillip’s Elegantly Possible Path

Fear often grips the hearts of most parents who have a child with a disability.  Our family did something different yesterday to help minimize that fear. We participated in a “Person Centered Planning” meeting. This program is meant to intervene and provide assistance to people who are in the most danger of becoming isolated. That could happen to our son, Phillip. Surrounded by the people most important to him, we mapped out a five year “Person Centered” path to help Phillip live the most vital and inclusive life possible.

The office of All About Developmental Disabilities helped organize the innovative session and we met in the new  AADD Family Support Center. None of Phillip’s nine team members who came were sure what to expect. At our first meeting, we sat in a circle and let Phillip talk about his dreams and hopes.  I have done too little of this in the 23 years of his life. But I am not alone. Most able bodied people fail to consider what the person with the disability really wants, because so much time is spent on caregiving.

But there is something meaningful that happens when I or anyone actually stops and inquires about Phillip’s cares, wishes and dreams.  I think this is true for anyone with a disability. ( When a person is  non-verbal, the ones who care the most about the individual find that they can be very articulate in describing a meaningful and fulfilling life’s plan.)

Our first meeting was run by an outside facilitator, Stacy. She drew a big diagram on the wall and then started by asking Phillip what he was good at doing and what he liked. She wrote down his answers: Hip-hop, American Idol and the University of West Georgia, where he attends school, were at the top of his list.  His father, sister, tutors, caregiver and case manager then added to Phillip’s strengths and weaknesses. He also loves French, public speaking and hanging with friends. But making meaningful friendships are difficult for him because of his many awkward social skills.

As a group, we then did some problem solving. What can be done to help Phillip develop better social and conversation skills?  Kathy Keeley, the AADD interim executive director, was observing our group and gave an excellent suggestion.  Ms. Keeley would help connect Phillip with a coach who could improve his social interactions on the UWG campus.  This sounded like just what he needed.  I felt a sense of relief that we were no longer alone in helping guide Phillip through his life’s journey.  There were other helpers along this path.

Another big problem is Phillip’s failure to manage his time wisely.  His tutor, Maria, suggested spending an hour at the beginning of each week, writing in detail the tasks that need to be done.  Phillip just learned how to write in his I-phone calendar, so this will be very helpful.

We also looked into the future and what Phillip would need.  He does use a power chair, but not very often.  His facilitator suggested that he practice riding it on the bus on campus, because he will need the power chair to get around on his own. One thing Phillip was very clear about was his dream to live in his own apartment.  But he hadn’t thought about how he was going to go shopping or the doctor, if he didn’t know how to use mass transit and his power chair better.  Phillip agreed he would practice riding more on the bus.  We would also encourage his caregivers to support him in this practice.

Then the facilitator, Stacy,  asked everyone at the meeting to sign up to support Phillip in the coming years. One by one, we signed our names for Phillip and the world to see.  At the end, we all wrote one word that helped clarify this process.  Phillip’s word was “difficult.”  It will be a difficult journey.  Other words from his team were “hopeful, clarifying, scary, loving, caring, enlightening, inspirational and new.”

The group agreed to meet again in three months to celebrate the positive things that have happened and develop strategies to solve the negative.

Phillip’s 28-year-old sister, Greta, who is an architect looking for a job, summarized the meeting by saying, “I think I’d like to have a person centered plan for me.”    Indeed, the world would be a better place if more people had such planning.  I can’t help but wonder if such a plan could have been of immense benefit to someone like Adam Lanza, whose isolated life led to horrific violence in Newtown, Conn. There is a huge need for more programs like Person Centered Planning to combat isolation and clearly improve the lives of anyone, but especially a person with a  disability.

Before the group disbanded, we titled Phillip’s plan, using his nickname “PMO.”  It is:  “PMO’s Elegantly Possible Path.”