Volume IV, Issue 1 • Spring 2018
This issue of Bridges highlights Person-Centered Planning
To view a pdf version of this issue, please click here
Voices — A View from Where I Sit
by Jeiri Flores
Is it “person-centered planning” or is it “person-centered living”? If you had to describe your life out loud to someone else, how would you do it? What would you say? If it was to be classified under a specific model or program, what would it be called? Would there be any specific requirements that needed to be completed to be a participant in that model or program? People with disabilities are often asked these questions in one way or another; they are asked to describe their world as if it were a movie. At any given time they are expected to know more about themselves than their non-disabled peers. For example, they could be asked what services are they receiving, who pays for those services, do they have any friends, do they want friends, what is their diagnosis and how does it affect them; honestly the list could be endless. This became more and more apparent to me as I set out to choose a self-advocate to interview who could highlight person-centered planning. I realized that a non-disabled person would never be asked if they lived a person-centered life.
With that being said, I selected a self-advocate who lives a person-centered life. Below you will meet Jonathan “Jon” Ayla who is passionate about living his best life.
Editor’s note: Jeiri Flores is a strong, passionate Puerto Rican disability rights activist from Rochester, NY. She earned her Bachelor’s Degree in Sociology and African-American Studies at SUNY Brockport in 2014. Welcome to Jeiri, who will be writing our Voices column going forward. We’re happy to have her on board with Bridges!
Voices — Interview with Jonathan Ayla
by Jeiri Flores
Q: If you had to describe yourself to a complete stranger, how would you describe yourself?
A: I am 29. Hispanic, Puerto Rican. I was born in Rochester. I am an angry, passionate progressive, not liberal, not conservative progressive. I’m right in there with Bernie Sanders. At times I can be the life of the party.
Q: Have you always lived in Rochester?
A: I was born in Rochester and then spent what amounts to a few years of vacation time in Puerto Rico in between grade school and high school.
Q: What’s your disability?
A: Cerebral Palsy. It’s not all that obvious, but it’s still there. And that’s the thing: people always see disabilities when they are obvious, not when they’re not. They’ll see someone like me, it’s like “okay there may be something about you, but you don’t have a disability.” But I do. It frustrates me because disabilities don’t have to be obvious to be there.
Q: What’s your support system like? How do people support you?
A: I have my mother. I have my sister, and I have my uncles and cousins in Ohio. My mother supports me with unconditional love. My sister gives emotional support on social media. Every time I am going through something, I can always count on her for comfort. However, she is in Seattle now, which makes seeing her face-to-face quite difficult.
Q: What are some of your goals?
A: To contribute overall to society. That means it can be something as little as socializing to community service.
Person-Centered Planning
What is Person-Centered Planning?
- Seeks to listen, discover and understand the individual
- A process directed by the person that helps us learn how they want to live and what supports are needed to help them move toward a life they consider meaningful and productive
- Empowers the person by building on their individual abilities and skills, and building a quality lifestyle that supports the person in finding ways to contribute to their community
- Considers other factors, such as health and wellness, during the planning process.Helps to set a direction while providing positive motivation
- Increases the likelihood of achieving the desired outcomes that are most important to the person receiving supports
Adapted from OPWDD - https://opwdd.ny.gov/opwdd_services_supports/person_centered_planning
What is the Purpose of Person-Centered Planning?
- To look at an individual’s strengths and needs
- To assist the person in gaining control over their own life
- To increase opportunities for participation in the community
- To recognize individual desires, interests, and dreams
- Through team effort, develop a plan to turn dreams into reality
Steps to Achieving a Person-Centered Plan
Step 1: Choose a facilitator
A facilitator needs to be a good listener, able to work creatively to uncover the dreams of the individual, discover the capacities within the person and within the community, and be a community builder. A facilitator can be a family member, school staff member, a service provider, or a consultant. It is helpful if facilitators have previous experience or training on conducting person-centered planning.
Step 2: Design the planning process
The first meeting can be used to develop the personal profile or history of the individual. This can take a couple of hours. Parents/families and the person with a disability will:
- Develop a list of people they want to invite, sometimes called a Circle of Support, based on their: knowledge of the person and family; ability to make this process happen; connections with the community; and connections with adult service providers (if they will be involved in the future).
- Identify a date and time for the initial meeting and other follow-up meetings.
- Determine the place that will be the most convenient for everyone, especially the person with a disability.
- Discuss strategies that increase the participation of the person, the person with a disability.
- Decide who will take a lead in gathering information during the meeting and what person-centered process will be used (PATH, Essential Life Planning, It’s My Life, or another).
- Develop a history, personal life story or profile of the person by everyone sharing past events in the person’s life. The person’s parents and family may share the largest amount of this information. Critical events, medical issues, major developments, important relationships, and more may be shared.
- Describe the quality of the person’s life by exploring the following: community participation, community presence, choices, rights, respect, and competence.
- Describe the personal preferences of the person. Include both likes and dislikes to get a complete picture.
- Send invitees (Circle of Support members) the personal profile.
A Parent's View of Person-Centered Planning
by Cindy Ferland
We always prayed that one day Christy would live independently. Person-centered planning was the answer. We gathered the largest team of invested individuals we could while Christy was still in high school and worked out a plan that was the perfect continuation of the road to growth that Christy had always been on.
Christy’s daily schedule is what she chooses and because motivation is everything, she is growing by leaps and bounds. She enjoys horseback riding lessons, music lessons, using her gym membership, volunteering at the community center, and spending two days at SHINE, a creative arts program.
The independence and confidence that Christy has gained from the control she has over her future is amazing.
She now has a housemate and is adding new social and communication skills to her routine. The support team has changed a bit over the last four years, but we continue to be surrounded by people who care and are helping to look out for Christy’s best interest.
As crazy as it sounds, it is so comforting to know that Christy needs us a little less these days.
Person-Centered Approach for Younger Children
Person-centered planning is typically used during Transition planning, the process of getting ready for adult life or life after high school. But the person-centered approach can be used for anybody, at any age, including people who don’t have disabilities.
- Document your child’s activities and interests.
- Create a vision statement for your child’s future. Consider what activities, attitudes, skills, and values you can help your child develop to work towards that vision.
- Teach your child to express their likes and dislikes through speech, art-making, and role-play.
- Give your child choices. Show that you value their ability to decide what they like.
- Provide opportunities to try different activities. Respect your child if they indicate they are not interested, or not ready, for the activity. Try something else.
- Find or create activities that support your child’s interests and strengths
Question:
Can you give me ideas to prepare for my daughter’s CSE meeting? I want to be a team player, not just a passive listener.
Answer:
Here are some tips you can use to prepare for the meeting:
- Find out how long you have to meet
- Write down your questions and concerns
- Prioritize your child’s needs
- Set realistic goals as to what can be accomplished during the meeting
- Ask to meet with the teacher or school psychologist to go over any new testing prior to the meeting
Also, here are some ways to collaborate:
- Ask “What if” questions as a way to propose new ideas: “What if we gave Anna a five minute break?”
- Take notes
- Recap important points before the meeting ends
- Make sure everyone knows who is responsible for specific tasks
- Ask when the tasks will be complete
- Don’t forget to say “thank you!”
– Laura Arrington, Family and Youth Education Coordinator
Do you have a question for one of our advocates, a topic or issue you’d like some guidance on? Submit your question on our Facebook page or email mschaertel@starbridgeinc.org – we’ll choose one or two to include in the next issue!
From the Editor
“I can just see Nick ushering at a movie theater, Geva Theatre, or RBTL (Rochester Broadway Theater League),” Nick’s service coordinator contemplated during one of Nick’s person-centered planning (PCP) meetings. Based on Nick’s interest in socializing along with his passion for music and performance, she shared her vision with the team.
The PCP facilitator turned to Nick and asked, “What do you think? Would you like to be an usher?” After she explained to him what an usher does, Nick responded “Yes!”
Then Nick’s aunt, another member of the team, chimed in, “I’ve always wanted to volunteer for RBTL. Maybe Nick and I could work together.”
And that simple, quick exchange is how it all began. Nick has been ushering for RBTL for six years with his aunt Lisa Schaertel. Before each show, Lisa reviews seat numbers in their section, so Nick has a chance to see where they are placed. Then when patrons come to the show, Nick is ready to show them to their seats. The other ushers know Nick and value his work, and Nick is proud to volunteer in his community. It’s a win-win situation.
I believe this is an example of person-centered planning at its best: it began with assessing Nick’s interests and ended with Nick pursuing an interest in the community.
– Maria Schartel
Starbridge Workshops, Conferences & Special Events
Click on the event links below for more information
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Creating a Life After High School Series Starting Tuesday, April 17, 2018 | 5:00-8:00pm | Monroe 2-Orleans BOCES in Spencerport, NY |
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Starting Saturday, April 28, 2018 | 10:00am-2:00pm | Corning, NY |
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RTI/504/IEP: What's it all about? April 30, 2018 | 10:00am-12:00pm | Lincoln Branch Library in Rochester, NY |
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May 12, 2018 | 10:00am-12:00pm | Happiness House in Geneva, NY |
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