Person-centered planning (PCP) as a concept has been around for more than 40 years. The aim is to involve individuals in identifying their own goals, needs, and preferences and creating a plan for achieving those goals. It is a collaborative approach that involves the individual, their family, friends, and professionals who work with the individual or can provide information and guidance. In this article, we explore the process and a variety of ways parents can use a person-centered plan (PCP) to benefit their child with a disability.
For more information, we spoke with two experts, Richard L. Rosenberg, PhD, a board member of the California Transition Alliance, and Brent C. Elder, PhD, associate professor at Rowan University, who both use person-centered planning in their work, as well as Cathy Gott, mother of two, founder of Education Spectrum and Danny’s Farm, a consultant for ETTA, and member of the LA County Commission on Disabilities.
Central to the person-centered process is the individual. While the plan involves a circle of support to contribute ideas, it is the person and their dreams, hopes, and needs, that should be driving the plan. The person-centered planning process involves gathering information both from the individual and from people who spend time with them about the individual's strengths, abilities, and challenges, as well as their personal goals and desires. The information is used to develop an action plan tailored to the individual's unique needs and circumstances.
The goal of person-centered planning is to empower the individual to live an autonomous life and to promote positive interdependence, the state of being interconnected with and dependent upon one another. The process emphasizes the individual's right to make choices and be involved in decision-making, and recognizes that each person has unique talents, strengths, and abilities that can be used to achieve their goals. Person-centered planning can be useful for any individual, particularly when facing a major crossroads in their life.
A PCP can help a child at any stage of life make more independent choices, honor their preferences, and have a support team rooting for them as they work towards their wants, hopes, and dreams. While a PCP can be done at any age, it’s probably most appropriate for middle- and high-school kids, especially when a transition will be happening in the next couple of years. If a child is younger, they can still meaningfully participate in their own way, but to help a younger child fully engage in their plan, it’s important that the medium they use to share is matched to their needs and communication style, such as asking them to draw pictures or point to things that they like and want. The questions asked of them can also be tailored to their developmental level.
Many California parents today are familiar with the term “person-centered planning” because of the central role it plays in California’s Self-Determination Program (SDP). Within that program, an Independent Facilitator or your Regional Center coordinator is required to hold a person-centered planning meeting to determine the needs and desires of the individual (or family, in the case of younger children). However, you may not realize that person-centered planning is intended to exist even outside of the Self-Determination Program. For example, the Individual Program Plan (IPP) created by the Regional Center is also intended to be a person-centered process, and the same process can be used in IEP planning. That is the intent; however, in practice, many of these processes fail to live up to the standards of person-centered planning.
Dr. Rosenberg, who has long been a proponent of the McGill Action Planning System (MAPS) and Planning Alternative Tomorrows with Hope (PATH) person-centered planning methodologies developed by Dr. Marsha Forest, Jack Pearpoint, John O’Brien, and Beth Mount in the 1980s, uses person-centered planning to help teens and adults plan their transition to adulthood. He says person-centered planning (or person-driven planning, as he calls it) can empower individuals “because it turns the power over to the student.”
He adds, “It's not enough for it to be centered on the person…that person has to be part of the process, and driving. We need that person to get excited about their life and so excited that they're going to drive their life into quality with jobs, college, living, quality of life. So we move from person-centered — having the person in the middle, celebrating — to seeing what we can do for that student, to drive it through self-directed services, a self-guided IEP, IPP, or IPE.”
Dr. Rosenberg talks about the PCP process (for both younger and older kids) more in-depth in this clip:
Having a family-centered plan can help focus your priorities where your child is concerned. These priorities might drive the SDP spending plan or become goals in your child’s Regional Center IPP. For young adults, the PCP might be used to identify their college or career-training path. At any child’s age, having a PCP makes it easier for parents to advocate for their child, knowing their efforts are centered on their child’s hopes and dreams.
Having a sense of a person’s long-term goals is vital to identifying concrete steps to take along the way. With a PCP in place, you know that the short-term goals and services specified are pivotal in opening up further opportunities for your child. Historically, documents like IEPs have often been driven by deficits—the team identifies where a child is struggling and creates goals and adds supports based on those deficits. Person-centered planning is focused on identifying a person’s strengths, which can be used to create stronger IPP and IEP goals. Dr. Elder points out that person-centered planning is also focused on positive interdependence — recognizing that supporting your child’s success takes a village and identifying how that village can collaborate.
Cathy Gott explains the importance of person-centered planning:
Our children with autism are now 31 and 26, but when they were first diagnosed, they were referred to as “consumers" by the Regional Center. The "consumer" was not a part of the planning process; rather, parents and professionals made decisions on their behalf. As our society has progressed, so has the way we deliver services.
Our son Danny receives a service called Supported Living Services (SLS), which is delivered by a vendor of the Regional Center. The SLS provider utilizes a person-centered planning approach, and it has been invaluable for us. Danny moved out of our home seven years ago; the PCP includes having a monthly "circle meeting." Every month, Danny's circle of support meets and discusses relevant issues. I attend as many of these as I can, but the circle can include his job coach, his therapist, his Regional Center coordinator, and his caregivers with whom he lives.
I have learned so much through this process, and so much of it has been about "letting go" for me. I'm sure that many parents raising children with disabilities can relate. We’ve had to be in charge of so many things in order to provide the very best care for our children. These days, Danny doesn't want me to be in charge of his life. And it has been a process for me to learn to let go and allow him the dignity of making as many decisions about his life as he possibly can. This also means giving him the dignity to make his own mistakes — and to learn from them — just like we did (and still do).
Having a "circle" around Danny has enabled me to be Danny's mom. I'm not his therapist; I'm not the one helping him with his daily household chores. I'm not the one checking on him at work. I'm not the one making sure he gets where he needs to be. I get to be his mom, and that's the role I am privileged to call my favorite.”
Vital to a PCP is the person-centered planning meeting. The meeting must always include the person whose plan is being created. Other participants can include important people in the person’s life, such as parents, stepparents, grandparents, aunts and uncles, neighbors, friends, and parents of friends. Often, other young people such as siblings, cousins, playmates, and school friends are the most effective members of the meeting. You can also invite your school team, private therapists, and community members or volunteers. They often see a side of your child that you as a parent are not aware of.
It is important that the meeting has a facilitator. This can be a trained professional, such as an SDP independent facilitator or someone else who understands the person-centered planning process. It is also very helpful to have someone act as a scribe and write everything down. Often, person-centered planning meetings have poster-size sticky notes on the wall for people to write down the ideas generated by the meeting. It's a good idea to prepare for your meeting by speaking to the facilitator first and introducing them to your child. Ask your facilitator what you can send to the participants to prepare them for what to expect.
The meeting can be held anywhere, although home is often the most comfortable place for participants. Dr. Elder, who uses person-centered planning in the IEP process as a teacher and an inclusion specialist, often uses the term person-driven plan. He explains that it's not enough for the plan to be focused on the individual with their needs and desires at the center; rather, it’s important to actively involve the individual so that their needs, likes, dreams, and worries drive the outcome of the planning process.
Elder finds that holding the meeting in his students’ homes, when possible, often provides helpful information about the child’s family and helps to disrupt the power dynamic inherent in formal school-based meetings, but not all families will be comfortable having the meeting at home. Dr. Elder also explains that it’s important that the meeting is accessible. Dr. Rosenberg notes that the introduction of platforms such as Zoom is a game changer, allowing multinational families to include extended family and friends in other time zones and on different continents.
Start the person-centered planning meeting on a positive note by celebrating the individual’s gifts, talents, and dreams. Then the group can develop action steps to help the person move closer to their dreams and goals.
The MAPS process includes a series of questions that the facilitator will ask after introducing the process. Respect for the individual’s goals and wishes is a priority, and participants are asked to withhold judgment to honor the individual completely.
During the meeting, besides listening and asking questions, participants can create a “map” of the individual’s story and history by drawing pictures or writing down words. Dr. Rosenberg tells us, “The map in the graphic history really helps show the individual and the family member all the pieces. So there is not a right way or a wrong way to do mapping, graphic design, history, or vision boarding — whatever works for the facilitator, the family, and the individual. People get excited when there's big butcher block paper, or flip charts, or a whiteboard that then becomes alive, and we transpose it from that creative writing to an 8.5 x 11 document that can trail your son or daughter.” He tells us that this process helps redirect the team back to the important aspects of that individual’s life: “We're looking at jobs, we're looking at life, we're looking at home, we're looking at behavior, we're looking at communication, we’re looking at friendships, and that comes alive when it's on a large piece of paper or whiteboard as we navigate.”
At the end of the meeting, the facilitator asks for one word or phrase to sum up each participant's experience with person-centered planning. All the notes taken at the meeting are used to create an action plan. This can be a graphic representation of all the aspects of the person’s life plan that were discussed. The notes could also be used to create a Self-Determination spending plan or a vision statement for the person’s IEP.
Creating a PCP is a big event. Many families use this process during transition times, such as when an individual is going to middle or high school, is transitioning to adulthood, or is on the cusp of another significant life change. The action plan can be reviewed and updated periodically, but it can also last for several years if there aren’t a lot of life changes.
Dr. Elder has mostly used person-centered planning to assist him in planning better IEPs. The MAPS person-centered planning approach can be a powerful way of personalizing an IEP to set in motion a process for fully including a student in their school or community, if that is the best option for them.
As a teacher, Dr. Elder often sets up a person-centered planning meeting as a way to get to know a new student or a student whose family is facing challenges with the IEP process. Even if your child doesn’t have a teacher like Dr. Elder, you can involve your child’s school team in the person-centered planning process. Inviting them to participate in the meeting is the most effective option, but if they cannot come to the meeting, you can still ask them questions beforehand.
You can also share the results of the person-centered planning meeting — the action plan — and have a discussion with your child’s teacher about how the plan should drive IEP goals.
In the end, what is one word we can use to describe person-centered planning? According to Dr. Elder — “powerful.”
For more information on person-centered planning, watch Dr. Brent Elder’s video on the MAPS process and see the other resources on his Rowan University's Learning Resource South (LRC South) website. You can also check out this sample PCP document prepared by an Independent Facilitator.
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