Person-centered planning is more than just a buzzword, it is a system shift that puts the desires and life goals of a person in the center of a support system.
Historically and today, people with autism and other intellectual/developmental disabilities are often not given the opportunity to decide or be considered when thinking about who will care for them or how they will spend their time. Many find themselves in the situation where they are simply looking for a solution, a place to put their loved one during the day to break up the monotony of movies or video games on the couch.
Instead of asking, “In what program does Sarah best fit?” Person-centered planning and programming asks, “Sarah, what are your life goals? What makes your life joyful? What makes you feel alive? What drains the life from you?” By starting with the person first, we can begin to construct a support system around an individual instead of forcing people into programs that don’t fit.
To help clarify what this may look like in practice, let’s take a look at two different stories:
Story #1: Sara
Sara has the gift of gab, unlimited cell phone minutes and texts are a necessity. She loves her friends deeply and is influenced by her faith to give back to her community. She is able to clearly communicate her desires, and aims to live a life of independence, similar to her sister. She hopes to marry and live with a life partner – one whom she already has in mind. Textile art is her passion: tie-dyed dresses, custom purses, doll outfits, ponchos, quilts, etc. High school was very difficult for Sara, and she had a few run-ins with the police in the past. Luckily, she has found a day program where she acts as a mentor to others with I/DD, even though she is also a participant. The activities of the day program don’t matter to her as long as she is with friends. She has had other jobs, but finds more joy attending a day program and not enough interest or support in the workplace.
While Sara is unfamiliar with “self-advocacy,” “accommodations,” “person-centered planning,” or “supported employment,” she is learning about these terms and beginning to bring her support team together. She has connected with a group of people interested in starting an urban intentional community, a planned community to offer affordable housing with neurodiverse neighbors in the heart of the city. Through her leadership with this group, she has developed a relationship with a younger couple who is a host family home provider. They believe in her ability to live independently from her family, and have started to discuss what Sara’s ideal life may look like. They have helped her access vocational rehabilitation support for entrepreneurs so she can begin to focus on self-employment as a goal instead of attending the day program everyday where most of her waiver funding is currently used. It’s exciting for her to think about attending craft fairs and farmers markets to sell her creations and meet new people. She has decided to move out of her family home and into a host family home arrangement as a step towards becoming less reliant on her family and learning through practicing the necessary life skills to be a roommate with a friend or a spouse in the future. Sara is able to articulate when she is being pushed past her comfort level or when she wants to adjust her person-centered plan.
Story #2: Denali
Denali is a man of few words. He has difficulty getting up and walking around, but is incredibly strong physically and mentally. Without a typical way to communicate, his caregivers need to be hyperaware of his unique language. If you have spent much time with Denali, you will realize he loves lounging on his front porch swing, sitting in the jacuzzi, or floating in the pool. One of the few places that seems to pause self-injurious behavior is on the back of a horse. Much of his life has been encompassed in pain, so moments when he can be content are treasured. Crowds, loud environments, unwanted touching from others, or unexpected transitions to different spaces can cause Denali pain in ways that many neurotypicals never experience. For him, attending a day program or living in a group home is not possible as many of those settings will not support someone with “behaviors” or who can not use the bathroom independently.
Person-centered planning for Denali looks very different than for Sara. Those who are close to him (parents, siblings, teachers aides, etc.) must do their best to represent his strengths, challenges, and what makes Denali happy for he cannot easily communicate those things verbally. Luckily, in the state that Denali lives in, he can access what is called a consumer-directed or self-determination waiver. This means that instead of an agency receiving funding to provide support for Denali, his support team can hire and fire staff directly, including his family members. This flexibility allows him to plan his own schedule which is important as some days are better than others, and it is hard to anticipate what days will be “good” or “bad.” On a day where he wakes up in pain, rushing to be at a program for a 9am start can be excruciating for him, his caregivers, and the program staff. Even on a “good” day, if Denali was part of a program that was going to a movie, which is a difficult activity for Denali to participate in, he may not have the option to decline attending the outing, which could lead to a sensory-overload meltdown in the theatre lobby. As he gets to plan his own schedule and hire his own support staff, Denali is able to prioritize the community activities he loves and take the time needed to rest to attend these community outings.
Both Sara and Denali, though very different in their support needs and life goals, have had access to the state-funded and natural supports necessary to live person-centered lives. Unfortunately, millions of US citizens with I/DD are not afforded this same luxury, but that doesn’t mean they cannot begin to live person-centered lives.
Here are three top tips to help someone you love access appropriate person-centered supports:
- Begin to record the things that person needs in life to be happy. As a caregiver, imagine in the next 5 minutes that you will be unable to see or speak for a year. What do those who support your loved one need to know about him? For example, he needs to put his socks on before putting on his shirt, she needs to have a spoon in all her drinks, he needs to be given a 10-minute heads up before transitioning to another activity, she despises ketchup, he needs to take his meds with chocolate pudding and sometimes will tolerate applesauce, she needs to be watching an episode of Friends to fall asleep at night, etc. These are details that can make or break the quality of one’s life. These things are worth writing down, sharing with all paid and unpaid supports, and placing in a binder as the beginning of one’s Person-centered plan.
- Make a list and/or assist someone to identify all the activities that bring joy, laughter, smiles, enjoyment to the person you love. Make it a priority to build relationships and a network for the person you support to continue participating in this activity even if you are not present. If the activity is dance, consider a local dance studio, restaurant, or gym that offers weekly dance classes where the same people gather. Talk to the instructor and attend for a few months to see if those present are ready to embrace a neurodiverse dancer. If not, move onto another setting, but don’t let go of the goal. If you can’t find that community, consider partnering with a local organization to start your own. Social media has helped project-starters and grassroots media create incredible networks of support.
- According to David Seaton, a renowned trainer and advocate, person-centered support includes the individual in decision-making at all levels. Whether someone is directing their support team or learning how to sign, communication as self-advocacy is a critical key to the dignity of directing one’s life and needed supports. We must do our best to instill the self-determination and communication skills necessary to help people understand what they want in life as their family caregivers may not be around to be their voice.
A landmark policy change in January 2014 promotes the person-centered philosophy. In order to receive Home and Community-Based Service (HCBS) waivers, public financial support for long-term support services, the recipient of a HCBS waiver must participate in a person-centered planning process and have their person-centered plan reviewed every year. In fact, Colorado invested $500,000 into training their citizens on person-centered thinking and supports.
The Coalition for Community Choice (CCC) Policy Brief and FAQ describe these new regulations. You can use the CCC Person-Centered Planning resource to make sure all of the regulations specific points are included in one’s Person-Centered Plan to access public funding through a HCBS waiver. This person-centered planning process and plan was included in the new regulations to ensure greater authority of the decisions of people with I/DD and increase flexibility of regulations in order to accommodate individualized support needs. For example, one of the criteria for a home includes access to food at any time. For someone with diabetes and working on the skills to make important food choices, having access to food at any and all times may be dangerous for their health. In this case, the HCBS recipient should outlined in the supports and goals of their person-centered plan restricted access to food is necessary, and list the supports and goals this person has for selecting food choices in the future.
As we look towards a better future for adults on the autism spectrum or others who have intellectual/developmental disabilities, we must remember that trying to fit a round peg in a square hole is frustrating. Person-centered plans help create a clear path of lifelong learning and support that can influence not only a person’s well-being, but brings together and empowers their whole support network, slowly changing the accessibility culture of our communities.
Call three people today, and ask if they are interested in being part of your person-centered planning team!
Desiree Kameka, Housing Director at Madison House Autism Foundation
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