Not so long ago, I wrote about how my family used the positive behavior process to help manage our son Richie’s challenging behavior. The entire series was about how we were able to overcome and manage Richie’s aggression towards others, self-injurious behavior, and when he became destructive in our home. We were successful using the positive behavior support process and we’re having success using it again! We had a lapse in upholding our original plan with fidelity and as a result, we were experiencing the same behaviors – only this time around it was much worse. We were dealing with the fact that Richie was taller, stronger and now repetitive self-slapping was added to his list of self-injurious behaviors. Richie’s frequent self-slapping is a new behavior that is so difficult to control and change, but it’s something we’re currently working on with a new and improved positive behavior support plan. After teaming up with knowledgeable and experienced behavior analysts and assistants, and using other therapeutic interventions, we were able to get Richie’s aggression under control again. Only this time, we took it a step further. In addition to following our well-crafted positive behavior support plan, we were going to create a Person-Centered Plan.
What is a Person-Centered Plan?
A Person-Centered Plan is a process using a team-based approach for determining future life outcomes together with the focus person. In our case, the focus person is my son Richie. Together our team discussed and developed strategies that will help Richie to achieve those life outcomes.
Key Steps for Preparing for the Person-Centered Planning Meeting Include:
- Scheduling a time and place for a group of participants that is convenient and comfortable for about a two-hour meeting.
- Inviting anyone who is involved in Richie’s life. Richie’s siblings, his parents (in our family situation he has two family households – Kirk and I and his dad and stepmom). We also invited therapists, members of the IEP team at school, care givers, service providers and anyone who might be able to contribute meaningful information about Richie. For anyone who couldn’t make the meeting, we invited them to provide input by answering a few questions via email that would be shared and discussed during the meeting.
- Having markers, paper, tape, large sheets of note paper (25 X 30 would be ideal) and pens available at the meeting.
- Having one person record the discussion and another person delegated for facilitating the discussion and writing information on the sheets.
- Deciding on a way to maintain contact for sharing information and updates. For us, it was decided we would maintain contact via email.
This is unlike any other planning process I’ve ever experienced. When Richie, Kirk and I arrived at the behavior therapist’s office, the room was designed with our seats lined side-by-side facing large sheets of white paper taped across the wall. The table placed in front of us had different colored markers and pens on it. One by one everyone who was invited began to fill the seats in the room. We all greeted one another and took our seats. Although our group knew each other and there was no need for introductions, I would suggest starting with a brief introduction and have a sign-in sheet that tracks attendees and their relationship to the focus person. This is especially helpful if you have attendees who are not known by everyone at the meeting.
What Content is Required and Discussed at the Person-Centered Planning Meeting:
One of our behavior analysts facilitated and led the discussion by asking questions and offering examples that helped guide us through the process. This was incredibly helpful since most of us attending the meeting had never gone through this process before. She asked us questions and captured our answers on the large notes of paper on the wall. At the same time, another behavior analyst captured all the notes on her note pad for easier transcription of the notes. It’s important to note that Richie remained in the room the entire time we held the meeting. He needed to get up and walk around often and this was perfectly fine with everyone. The facilitator explained the meeting focus and the process to Richie and told him this process is about him and his future success. She also told him he was welcomed to let us know if he agreed or didn’t agree with anything that was discussed. She even handed him a marker and asked him to leave his mark on the white sheet to kick-off the discussion! The facilitator brilliantly kept us engaged, honest, positive, hopeful and excited as she asked the following questions (each large sheet was sectioned with the words in bold):
Future: Where will Richie be in five years (2024)? Where will he be living? What will he be doing? Who will he be spending time with? What is our vision for Richie? It’s important to think and dream big! This was where we all had fun thinking about the things we want Richie to accomplish. For us – our list included:
- Communicating Effectively
- Calming when frustrated
- Holding down a job he likes
- Owning his home with living supports – with roommates if he chooses
- Being autonomous
- Bicycling/Swimming doing fun outdoor activities
- Hobbies – Military collection (Richie loves military hats/clothing, etc.)
- Having friends with similar interests/girlfriend
- Cooking his own food and cleaning his home
- Volunteering – beach cleanup (Richie loves the beach)
- Navigating Public Transportation
- Advocating for himself – voting, safety, etc.
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Now: What is currently happening with Richie in relation to this vision? In this part we were able to list the things that Richie is currently doing. It was natural for us to begin with the things we found to be difficult for Richie. Our facilitator reminded us that we were to also think about all the positive things that Richie is doing successfully. We listed:
- Self-slapping frequently
- Communication – limited repeating, using pictures
- Takes a while to process information and movement
- Uses restroom independently
- Recognizes letters (we believe he can read), symbols, and is responsive
- Aggression is more manageable
- Does chores and cooks
- Sleep is much better
- Has a sense of humor
- Follows routines
- Frustrated when pushed
- Healthy
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Enroll: Who could we get to help? In this section we list the people in Richie’s life, as well as local agencies and other community resources who can contribute and help Richie to reach his goals. We can enroll:
- Behavior Support Team
- IEP Team
- APD
- Vocational Rehabilitation
- Centers for Independent Living
- Project 10
- Occupational Therapist
- Special Olympics
- Army Surplus
- Siblings
- HUG
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Overcome: What challenges will we face? In this step we list the things that serve as barriers to Richie’s success. We listed the following:
- Challenging Behavior (SIB)
- Communication
- Finding Engaging Activities Richie is interested in
- Obtaining Services
- Communication breakdown within the team
- Staff turnover
- Not everyone being on board with the plan (fidelity)
- Lack of social activities
- Frequent changes in intervention
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Benchmark: What do we need to achieve to make this dream a reality? We chose a date that was between now and our future goal to list activities and things Richie should be able to do. Our list of goals was set for year 2022 and looked like this:
- Understand Stranger Danger
- Use words or pictures reliably to communicate wants or needs
- Prepare 3 meals for breakfast, lunch or dinner
- Attend social events with peers at least weekly (dates)
- Have no more than one incident of aggression (mild)/week. No more than taps (5x a day)
- Have some social skills – greeting
- Follows instructions and stays on task for 45 minutes
- Identify 2-3 activities he likes and does independently for 1 hour
- Attends special Olympics or other social activities
- Accepts boundaries and sharing items
- Has new chore tasks: cleaning, dishwasher, vacuuming, dusting
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Next: Who will need to do what by when to put this plan into place? In this step we chose a date within six months of developing this plan to list the things we believe Richie will be able to do. We will be using the resources we all listed (please note that this plan will change over time, other ideas and resources may be added later).
- Communicate with words/pictures asking for items/saying stop or no
- No more than 1 incident of hard hitting or mild aggression per day
- Attend at least one social event
- Prepare 1 meal for breakfast, lunch and dinner
- Dial 911 and ask for help, interact with an officer appropriately, cross the street safely
- Saying hello or goodbye unprompted
- Remaining on task for 10 minutes (non-preferred activity)
- 1 leisure activity that entertains him for 15 minutes
- Giving up items without challenging behavior
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1st: What steps can we take right away? We were told to think about what we could do now to help Richie to reach these goals. What resources did we have access to? Who could we contact to learn more about other resources? This is what we came up with:
- Explore possibility of HUG (Online social activities), Boy-scouts, Special Olympics and other community activities
- Use picture communication board
- Words, gestures, other communication before getting or avoiding anything
- Ignore all junk behavior all the time
- Task analysis and teaching skills listed
- Practice safety skills on all outings (“help”)
- Prompting before greetings/goodbye, practice
- Explore possible leisure activities
- Not doing for Richie what he can do
- Communicate openly as team making decisions together
When we finished with the process, we all sat there and stared at the notes that represented our first Person-Centered Plan. I can’t speak for everyone else, but for me, it was the first time I had felt hopeful about Richie’s future in a really long time.
The facilitator asked us to come up, grab a marker and sign the plan to solidify our commitment to getting each step done. We were then invited to take pictures of our collaborative creation. Our homework was to review the notes when we got home and get to work.
When your child is diagnosed with a disability like autism or other life changing disability, your whole world is turned upside down. Over time, you’ll experience highs and lows throughout your parenting journey that includes reaching milestones, meeting great teachers, therapists and service providers (and not so great ones), but you’ll always be learning. I’ve had days when I felt good about what I was doing for Richie. I’ve also had days when I had no idea if what I was doing was working. I admit that my mind would go blank when I had to think about Richie’s future. Of course, I would acquire services and advocate for him and open up a trust account, have life insurance policies, etc. I want him to be safe and cared for, but I couldn’t picture what Richie’s future would mean to him or our family. I’ve been involved in writing other plans for Richie. The person-centered planning process is the first one that painted a clear picture of what could be my son’s future. It was the first planning process that helped me to actually visualize so many possibilities for Richie. Possibilities that I had forgotten could be his reality. This happens to many of us special needs parents when we’re going through the rough patches that catch us off guard. When we go through those challenging moments of pain and helplessness, we lose sight of hope. Sometimes we question our efforts, our parenting skills, we may even question our faith. I’m thankful for the stellar behavior team we have, the therapists who are passionately working with us, the IEP team who genuinely cares for Richie, our family who has endured unspeakable challenges and still moves forward with love, and God for putting all of these people in our path when we needed them for making all things possible. I am thankful for my son Richie who works harder than all of us to get through each single day.
The Person-Centered Plan is a Unified Quality of Life Plan. I highly recommend you develop one with your loved one and team. It will be your road-map for planning your son or daughter’s goals and achievements, building his or her self-esteem, and keeping them included throughout the entire process because their interests, safety, and dignity will always be the focus. For me, the person-centered planning process gave me a clear vision of Richie being safe, happy and living as independently as possible. It restored my hope and belief in Richie having a successful future.
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