becoming person centered for families

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Becoming Person-Centered

Becoming Person-CenteredFor Families

Well begin shortly! Thank you for being here!PLEASE NOTE: you should be hearing music while you wait. If you do not, make sure your computer speakers are on and the volume is up.

Becoming Person-CenteredFor Families

What well talk about:

What it means to be person-centered

Essential elements of Person-Centered Planning

Who needs a Person-Centered Plan?

How do people with disabilities participate?

How do you apply a person-centered plan to a systems plan?

Hang on to your hats, its going to be a bumpy ride.

Ive tried to think of clever ways to insert a caveat whenever Im presenting on the topic of being person-centered, because Im naturally a very direct person and often ride that line between making my point and sounding harshand because being person-centered conflicts in many ways to the traditional ways of thinking that are employed by what I refer to as the systems my blanket statement for the lifelong continuum of supports, from medical to educational to human, social and adult services. So its important that I make it clear that I believe whole-heartedly that systems supports are critical to people who need them for quality of life. I believe that we are all conditioned to place systems first when we approach the idea of a quality of life for a person who needs support. We start the conversation with what they can get; diagnoses, entitlements, providers, funding, and programs and then we build what their life will look like around that. The question of what makes the person happy and fulfilled might happen at the close of a conversation, or not at all; or, the answer is based on the list of the things available within the menu provided by the systems. Being person-centered means this approach is completely turned on its head. Being person-centered means we begin, end, and honor throughout every conversation and in every action we take, the desires, dreams and gifts of the person we love. It means that we place the systems secondary, and build them in a way that supports them, rather than the other way around. That doesnt mean we make everyones dream come true, but it does shift the conversation and the approach in a way that accounts for whats important both to and for a person. So sometimes this presentation can feel anti-system, and thats not the intent. 4

What it means to be person-centered

Changing the way we speakShifts our own way of thinking and models the person-centered approach to others.

Jargon

Impersonal references

System-speak

Problem-focused

People!

Gifts!

Dreams & Desires!

Happiness!

Important TO!

We are families, we are the ones who LOVE and CHERISH and WORRY about our CHILDREN; we are not the ones who ASSESS, MANAGE, RECOMMEND, APPLY, OR WORK WITH our children. When we adopt the language of those providing supports, we contribute to de-humanizing the individual. We often think that if we use jargon, we will be more respected and gain more attention from team members. Refer to your child by his name, her nickname, and keep the focus on whats best for them and why. Rather than saying he decompensates when he is exposed to environmental triggers, use simpler language and be pro-active. Making sure he has a way to tell someone he is stressed is important to him, it makes him feel more in control and he will be more successful.6

Changing our perspective

7

Inviting others to enroll and contribute

Circle of SupportIts about THEM, not usWe all have them!

Ask yourself, are you prepared to understand the critical importance of bringing others into your childs life who will help him and you provide a happy and healthy life? If youre saying or thinking Im terrified of what will happen to him when Im gone or cant take care of him any longer then you have 2 choices: lament, do nothing and risk your childs life falling apart unnecessarily when you are gone, or help your child build a support system that can carry on after you, of people who you have embraced and whose relationships with you and your child have had the time to be nurtured. We spend a LOT of time with families talking about this concept and embracing it fully; we always see initial resistancepeople will say we dont have anyone to help in which case identifying and developing a COS actually becomes part of the plan. We hear I cant ask anyone to help. Our society has decided that asking for help is a sign of weakness, and nothing can be farther from the truth. When we think about it, dont we all have COS in our lives? Doctors, therapists, friends & neighbors? Our children deserve the same, its just going to take a little more work. It takes time, it takes energy and it takes pushing ourselves outside of our comfort zones. But its essential.8

Listening DeeplyInviting ourselves to free our thoughts, abandon our preconceived notions about what we think they will say, and setting up a physical space that removes outside noises and distractions.

(PS it aint easy.)

The idea of listening deeply is one that we all think we understand, but I have learned that it means something very different from what most think. It involves both physical and the mental preparedness. One of the hallmarks of how we do PCP is the way we set up a room for a plan. We remove all tables, set up chairs in a semi-circle around a wall space where a co-facilitator is taking notes and creating images from the conversation. No one can take notes, phones are not allowed, and introductions are made only by first name. We dont ask whos who. In doing so, we establish a neutral space with no authority figures; a level playing field. Because there are no distractions in front of us, we are all forced to listen. Mentally, listening deeply involves stopping ourselves from deciding ahead of time what a person is going to say; in the case of caregivers and parents, including myself, its automatic that we assume we already know in part because were so used to interpreting what our child or loved one is saying. The best example I can give about deep listening comes from a video Id like to share with you. The 2 people being interviewed are my own mentors, Jack and Lynda, who I travel to see in Toronto every year and whose publications are my own personal bibles for pcp. By the way, this is the big reveal of the mystery behind those pictures of spaghetti9

Essential Elements of a person-centered plan

Essential Elements

Setting the stage & ground rulesCommitmentThe Dream & the GiftsPositive & Possible GoalsChecking in HalfwayCircle of SupportPlanning for Sustainability

Who needs a person-centered plan?

Who needs a PCP?Expecting a transition in the future (2-5 years).Examples: transitioning out of school or supported environments (group home, mental health units/psychiatric care) changing home or employment situations, marriage/divorce, aging into supported living.

No specific transition, but seeking a new way to introduce themselves and communicate whats important to and important for them.

How do people with disabilities participate?

Participation Communication challenges do not mean a person does not have dreams and desires for themselves, or gifts to give to their community; nor does it remove their right to pursue them.A PCP facilitator uses the persons own level and method of communicating to drive the conversation, and seeks permission for those closest to them to represent their voice.Loved ones must work thoughtfully to ensure that they are truly representing the person and not themselves.Examples: posters, powerpoints, visual boards, video clips, others voices

Myself and my partners at PCPP spend a lot of time learning about creative and effective ways to help people with communication challenges illustrate their desires, dreams, and vision. We believe everyone has them. (read)15

Participation Challenge:Invite others to share in creating the voice for your child if they need support. Be very thoughful about how you are asking:DONT ask what do you think is my childs dream?DO ask describe to me a day that you remember, when my child was very happy? Smiling, laughing, enjoying themselves, etc. AND what kinds of activities have you seen that make them smile and laugh and be at their best?

This is the core of the approach we take as facilitators; you can get much more accurate and person-centered responses when you frame the question correctly; that is, reduce the ability to add their own opinion about what makes the child happy by asking them to describe what they see. During a plan, since there is a group of people listening, the collective experiences can paint a picture of a person that includes insight beyond those of just the family members. How many of us would want others to learn about us only from our family members? 16

Applying a person-centered plan to a systems plan

This is the most important question we have to address when we are presenting the topic of Person-Centered Planning. There MUST be a connection to the systems supports; there must be a way to translate and apply a plan to a persons life when the person is receiving funding and programming whether its school or adult services, the system supports have a direct impact on quality of life, every day. Families are often worried about how teams will respond and react when they are presented with a person-centered plan. Heres the truth; they are loving it! More than 90% of the time, systems team members are participating in the plan process themselves; there has been no better way to convince them that this is an indispensible tool to the

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