Charting the Course to Your Good Life People First of Missouri Statewide Self-Advocacy Conference, April 2017

Welcome Introductions Introduce speakers and if the group is small enough, do introductions with the participants

Nice to meet you I’m Rachel Communications & Design Specialist Missouri Family to Family at the UMKC IHD, UCEDD MPA with an emphasis in Nonprofit Management Calvin’s friend and advocate Barbara’s granddaughter

Nice to meet you I’m David Advocacy Specialist at the Springfield Regional Office Likes to write Artist Creative soul

Goals for this Session Define what is important to you and your key support needs using the One Page Profile. Describe his/her “good life” and List positive and negative experiences that impacted his/her trajectory using the LifeCourse Trajectory. RACHEL: Our goals for our time together this afternoon are to

Charting the LifeCourse Framework RACHEL: So, now let’s get started learning about the LC Framework. Building Blocks

100% Focus on “ALL” 25% 75% National % Receiving State DD Services Only 1 in 4 people with DD receive services 75% National % Receiving State DD Services 25% All 4,900,000 people with developmental disabilities RACHEL: The LifeCourse Framework was made for ALL people. You might not know this but a lot of your friends might not be getting the same supports and services that you are. When we are talking about all people, we’re talking about all 4,900,000 people with developmental disabilities. A lot of times when we talk about what people with disabilities need, we’re only focusing on those who receive paid services from their state system. Only 25% of all people with developmental disabilities in America receive paid services. That means only 1 person in 4 with a DD actually receives paid services! This specific training was developed for people receiving services from the Division, the green part of the triangle ** Based on national definition of developmental disability with a prevalence rate of 1.49%

All people have the right to live, love, work, play and pursue their dreams in their community. This is our core belief that guides all of the work that we do at Missouri Family to Family. Let’s all read the blue box. All people have the right to live, love, work, play and pursue their dreams in their community.

What Life Looks Like Think about

What Life Looks Like

What Life Looks Like

History of People with I/DD

History of People with I/DD

History of People with I/DD

History of People with I/DD

What We Want to See…

What We Want to See…

What We Want to See…

What We Want to See…

NOTHING ABOUT US WITHOUT US! People with I/DD and their families need seats at the table so they can be involved in the changes we want to see and make our vision for a good life for all possible

Vision RACHEL: Now we’re going to talk about our visions for a good life. Hold up their portfolio and show inside

David’s Good Life Being independent Published author Own my own house in Springfield Simple life David, tell me what your vision for a good life is Tell me…. Live with my parents or anyone else Relying on other people ($$) Not being listened to or understood

What is YOUR Vision for a Good LIFE? Step 1: Groupversation: we’re going to ask the group – let them give their answers Step 2: We want you to write some of the things that make up your good life in the purple box. (2 minutes)

What DON’T you want?? RACHEL: Now that we’ve talked about the your vision for a good life… let’s talk about the not so good stuff. DAVID: Step 1: Groupversation: we’re going to ask the group – let them give their answers Step 2: We want you to write some of the things that you don’t want/or that drives you crazy or makes you unhappy in the red box. (2 minutes)

Trajectory Life Experiences RACHEL: Now we’re going to talk about the trajectory. Hold up their portfolio and show inside

Truh-jehk-ter-ee Say it with us! First, let’s all say it together. Some people believe that this word is too hard for self-advocates and they can’t understand it. So we’re going to teach you about it today.

Vision of What I Don’t Want What is a trajectory? Friends, family, job, fun things to do, independence, your own place, happiness Trajectory toward a good life RACHEL: A trajectory is the path your life takes toward the future. It can change based on the choices you make, other peoples’ actions, and events that might be out of your control. The goal is the good life, so we want the trajectory to go up. Vision of What I Don’t Want Trajectory towards things you don’t want

Life Experiences Learning to say “no” Learning to say “no” David: Along the trajectory we have life experiences. Life experiences are the stepping stones that you take on your trajectory to the good life. Example: about saying no

Life Experiences Getting a Job Chores and allowance Rachel: Life experiences are really important. Experiences that you have when you are younger help you when you are older. David: say Chores & allowance will prepare you for getting a job (talk about mom’s chore chart) Different work is worth different amounts of money We have positive experiences and sometimes we have negative experiences, and we learn lessons from all of them.

David’s Stepping Stones Moving into my apartment Supportive family Bought my mustang convertible! Job at Worlds of Fun Accident Leaving college Bad break-up Bad student job experience

Life Experiences Now let’s think about last, year, 5 years ago what are some things that happened to you that were totally awesome? Okay, now we want you to write down the things that happened that were awesome above trajectory. (2 minutes) Now let’s think about last, year, 5 years ago what are some things that happened to you that bad things weren’t so great or totally sucked? Okay, so let’s take a couple minutes and write down some of those bad things weren’t so great or totally sucked

CLIFFHANGER LET’S PLAY CLIFFHANGER!!!! Rachel – say instructions

Meet Frank. Frank is an eligible bachelor in his ‘40’s. Currently he lives by himself and pays his own bills. Frank enjoys drinking coffee, making friends, listening to music, and talking on the phone. He lives in a small suburb close to the main drag in town. Frank uses a wheelchair to get around. RACHEL

Frank’s Vision for a Good Life FRANK DOES WANT A girlfriend or wife??? Good health A place to live Plenty of coffee Make his own decisions Frank DOESN’T want To be lonely To not have control over where he lives To not be able to get out and get around town RACHEL read what Frank does want Katie will read WHAT FRANK DOES WANT

Doctor says his cholesterol is too high. FRANK DOES WANT to be healthy and live a long time. Rachel: read the slide Katie ASK What’s the problem with having high cholesterol? Well… Frank might have a heart attack…. His arteries might get all clogged up and he might have a stroke… Katie read what Frank doesn’t want Rachel read what Frank does want Frank DOESN’T want to get fat and unhealthy so the ladies won’t like him.

Frank starts swimming 3x’s a week. KATIE Frank starts swimming 3x’s a week.

Frank eats McDonald’s every day. RACHEL Frank eats McDonald’s every day.

RACHEL Frank quits smoking.

Frank drinks Pepsi Cola with every meal. KATIE Frank drinks Pepsi Cola with every meal.

Frank switches to drinking water. RACHEL Frank switches to drinking water.

to have to ask someone else for permission about Frank’s nephew has filed for guardianship because he is worried that Frank is becoming more forgetful as he gets older. FRANK DOES WANT be able to make his own decisions about his life, like who to date, and keep his right to vote. Frank DOESN’T want to have to ask someone else for permission about how to spend his money or where to live. ASK What happens when you get a guardian? Do you get to makes choices? Katie read what Frank doesn’t want Rachel read what Frank does want

Frank has good credit and a long history of paying bills on time. RACHEL Frank has good credit and a long history of paying bills on time.

KATIE Frank doesn’t know that Missouri Protection & Advocacy offers free support in guardianship matters.

RACHEL Frank calls Jenny at Missouri Family to Family and finds out Missouri Protection & Advocacy can help him.

RACHEL Frank forgets to pay his electric bill for three months in a row and his lights get cut off.

RACHEL Frank and his support staff are learning how he can use apps and his Google account to set reminders for himself.

Frank loves coffee and wants to meet people that live nearby. Frank uses a wheelchair and cannot get into the coffee shop down the street from his house. WHAT FRANK DOES WANT Frank loves coffee and wants to meet people that live nearby. KATIE: read what Frank doesn’t want, Rachel read what Frank does want Frank DOESN’T want He does not have a ride across town to get coffee at a different place.

Frank lives in a small town that does not have public transportation. RACHEL Frank lives in a small town that does not have public transportation.

KATIE Frank has two neighbors that also have mobility issues that also have trouble getting into the coffeeshop.

KATIE Frank doesn’t know about the Americans with Disabilities Act and how it applies to local businesses.

KATIE Frank goes to his local People First meeting and tells his fellow self-advocates about the problem. They talk to the owners and work on a solution together.

Your LifeCourse Portfolio Bringing it All Together RACHEL: Now, let’s turn your portfolio over and fold it back up and we’re going to work on the front page.

Hints and tips on filling it out Your One Page Profile Hints and tips on filling it out People, places and things that are important to you. Hobbies, belongings, rituals, routines, family culture. What do you care about most?

David’s One Page Profile Independence Family Art Apartment My job Being taken seriously Star Wars Give them 2 minutes to write it down

Hints and tips on filling it out Your One Page Profile Hints and tips on filling it out Specific kinds of support that are helpful, and what is not. Support you need to be calm and comfortable and accomplish your goals. Pet peeves

David’s One Page Profile Patience Sometimes need help to stay focused Sometimes I need space Can’t stand people clipping their nails

Hints and tips on filling it out Your One Page Profile List positive strengths, talents and qualities. Things people give you compliments on. Ask your family or others who know you well for ideas. People, places and things that are important to you. Hobbies, belongings, rituals, routines, family culture. What do you care about most? Specific kinds of support that are helpful, and what is not. Support you need to be calm and comfortable and accomplish your goals. Pet peeves Hints and tips on filling it out

David’s One Page Profile Creative Personable and helpful Good writer Cheerful Funny Independence Family Art Apartment My job Being taken seriously Star Wars Patience Sometimes need help to stay focused Sometimes I need space Can’t stand people clipping their nails

Using your LifeCourse Portfolio to Advocate for your Good Life You can use your LifeCourse Portfolio a million different ways. Rachel – show her raggedy portfolio DAVID: Even just putting it on paper can help you – you might discover you didn’t know about yourself, can make you understand yourself better, build your confidence to say these things out loud to another person

When to use your LifeCourse Portfolio Use the One-page profile when you have a new staff or support coordinator or are meeting someone for the first time Use your Trajectory to share the good and bad things that have happened to you over the past year or so person-centered plan meeting Use your Vision for a Good Life and What You Don’t Want at your planning meeting when you’re talking about your goals for the future You can literally hand your completed portfolio to your support coordinator and tell her to put in your plan. Take turns reading bullets

Wrapup

Reflection What have we learned? What are your next steps? What was your favorite part?

LifeCourse Drawing Bring your portfolio back for an extra ticket

Questions & Discussion

Rachel Hiles hilesr@umkc.edu If you need to get in touch with me……. Thank you for coming!

David Forbes david.forbes@dmh.mo.gov If you need to get in touch with me……. Thank you for coming!

If you need help along the way…. (800) 444-0821 | mofamilytofamily.org

Visit us online at lifecoursetools.com