Life Course Self Advocacy Charting the Life Course

Life. Course Self. Advocacy Charting the Life. Course Showcase 5/17/2017

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 advocate Barbara’s granddaughter

My Co-Pilots Lynn Rick and Brenda Smith, South Dakota Advocates for Change Jen Randle, Oklahoma Developmental Disability Council Kim Hubbard and Kyla Eversman, Missouri Division of Developmental Disabilities

Objectives ¥ ¥ ¥ Learn how self-advocates across the nation are learning about the principles of the framework See examples of how self-advocates are using Life. Course concepts and tools to help express their “good life” and advocate for what they need and want Hear how self-advocates are teaching self-advocates the principles and how to apply it to their own lives

Presentations ¥ ¥ PFMO STATEWIDE SELF-ADVOCACY CONFERENCE, APRIL 2017 « CHARTING THE COURSE TO YOUR GOOD LIFE « REACH FOR THE STAR: INTEGRATED SUPPORTS FOR A GOOD LIFE REAL VOICES REAL CHOICES DMH CONSUMER CONFERENCE, AUGUST 2016 « CHARTING THE LIFECOURSE « GETTING TO YOUR GOOD LIFE PFMO STATEWIDE SELF-ADVOCACY CONFERENCE, APRIL 2015 « WHAT IS A GOOD LIFE? « PLANNING A VISION FOR A GOOD LIFE OVER THE HILL PARTY, AUGUST 2014

Putting together presentations used to stress me out.

Charting the Life. Course Teaching the Principles

ALL ¥ ¥ How we introduce this: “The Charting the Life. Course Framework was created for ALL people” Why important? « ¥ People you know may not be getting the same services you are Key points « Only 1 in 4 people with DD gets DD services

Focus on “ALL” 100% All 4, 900, 000 people with developmental disabilities 75% 25% National % Receiving State Only 1 in 4 people with. DD DD Services receive services ** 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.

Family ¥ Transition from all: ALL PEOPLE are part of a family Why important for selfadvocates to know? • Families are the core unit of society Key Points • Everyone is part of a family • Family is defined by you • Family has a big impact on us

What Life Looks Like

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…

Life Domains Key points: ¥ Life isn’t just about health and safety Activities: ¥ Dinner conversation (where do you work? Where do you live? Who do you know (who do we have in common)? What do you like to do?

Daily Life & Employment What do I want to do during the day? What kind of job/career might I like?

Community Living Where would I like to live? Will I live alone or with someone else?

Safety & Security How will I stay safe from financial, emotional, physical or sexual harm?

Healthy Living How will I live a healthy lifestyle and manage health care supports?

Social & Spirituality How will I connect with spiritual and leisure activities, and have friendships and relationships?

Citizenship & Advocacy What kind of valued roles and responsibilities do I have, and how do I have control of how my own life is lived?

A Good Life ¥ ¥ Key points: We have to have a vision for a good life to make it happen

Vision

David’s Good Life Being independent Published author Own my own house in Springfield Simple life 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?

What DON’T you want? ?

Trajectory Key points: ¥ The trajectory is the path you take toward the future ¥ Our trajectories aren’t always straight ¥ We all go through life stages ¥ ¥ Stages are not linear – what one person is doing at a certain time, another person might not be doing The longest stage is adulthood – so we should be preparing people to have a good adult life! ¥ Life experiences are the stepping stones that get us to our vision of a good life ¥ Our choices and actions affect our trajectories ¥ No life sentences

Truh-jehk-ter-ee Say it with us!

What is a trajectory? ife l d ry o t c rd a tow oo g a Friends, family, job, fun things to do, independence, your own place, happiness e j a r T Vision of What I Don’t Want Trajectory towards things you don’t want

Life Experiences Learning to say “no”

Life Experiences Getting a Job Chores and allowance

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

Katie’s Good Life Trajectory Pe o Mo Mis ple F pla ved sour irst of ce in m i Sta rte yo dc wn olle ge at S tate Fa d life iroo g a d r a w o t y r cto e j Tra Sp ec ial ed cla ss es Trajectory towards things you don’t want VISION FOR GOOD LIFE Help other people with disabilities My own place Get married Get my journalism degree Vision of What I Don’t Want To be labelled To be unhappy

Katie’s Trajectory Started college at State Fair Got involved with People First and selfadvocacy Moved in my own place Help other people with disabilities My own place Get married Get my journalism degree 30 Special education low expectations; To be labelled To be unhappy

Life Experiences

CLIFFHANGER

Meet 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.

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

Doctor says his cholesterol is too high. FRANK DOES WANT to be healthy and live a long time. Frank DOESN’T want to get fat and unhealthy so the ladies won’t like him.

Frank starts swimming 3 x’s a week.

Frank eats Mc. Donald’s every day.

Frank quits smoking.

Frank drinks Pepsi Cola with every meal.

Frank switches to drinking water.

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.

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

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

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

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

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

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. 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.

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

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

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.

Integrated Supports Key points ¥ ¥ Everyone uses all different types of supports to get through their day-to-day routines and major life events. We can’t rely on one source of support for all of our needs

Integrated Services and Supports

Integrated Supports

Integrated Supports

Integrated Supports

Integrated Supports

Integrated Supports

Integrated Supports

Relying ONLY on Yourself Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Yourself Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions

Relying ONLY on Family & Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Relationships Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions

Relying ONLY on Family & Friends

Relying ONLY on Technology Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Technology Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions

Focusing ONLY on Eligibility Supports Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Eligibility Supports Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions

Marilyn’s Integrated Supports Smartphone, laptop, Kindle Fire, Facebook Outgoing, helpful, good heart, Partners in Policymaking, Project STIR, Rents her own apartment Nephew Burt, my brother Don, Rachel, Katie, Patty, Phyllis, Gary MARILYN’S INTEGRATED SUPPORTS Wal-mart, Schmitty’s, YMCA, Southern Heights Christian Church SSDI, Medicaid, Food stamps

Integrated Supports Bingo

Let’s play Supports Star Bingo!!!!

Integrated Bingo ¥ Includes: « Printable Bingo cards « Key – numbered for bingo cages The Catch: you have to get bingo across or diagonal – you can’t get it vertically in any category.

Integrated Supports Jeopardy!

Contestant #1

Who can help me find a job or start my own business?

PERSONAL STRENGTHS & ASSETS Who can help me find a job or start my own business? Sense of humor Can tie shoelaces Can say alphabet backwards High School Diploma

RELATIONSHIPS Who can help me find a job or start my own business? A friend Your dog Your High School Gym Teacher Spongebob Squarepants

TECHNOLOGY Who can help me find a job or start my own business? Youtube Monster. com Farmville Angry Birds

COMMUNITY RESOURCES Who can help me find a job or start my own business? The YMCA The Krusty Krab Missouri Career Centers The Park

ELIGIBILITY SPECIFIC Who can help me find a job or start my own business? Environmental protection agency Vocational Rehabilitation Section 8 Homeland Security

Contestant #2

How can I make home modifications to live as independently as possible as I age?

PERSONAL STRENGTHS & A Shome S E Tmodifications S How can I make to live as independently as possible as I age? Lottery ticket Money in savings Dishwasher Good at mopping the floor

RELATIONSHIPS How can I make home modifications to live as independently as possible as I age? Your five-year old niece Your handy neighbor Joe Squidward Tentacles Your great, great aunt Eunice

TECHNOLOGY How can I make home modifications to live as independently as possible as I age? Xbox 360 MO Assistive Technology Show Me Loans Your remote control The Geek Squad

COMMUNITY RESOURCES How can I make home modifications to live as independently as possible as I age? Home remodeling company Parks & Rec Department Grocery store Toys R Us

ELIGIBILITY SPECIFIC How can I make home modifications to live as independently as possible as I age? AARP Food Stamps Office Center for Independent Living Navy recruiter’s office

Contestant #3

How am I exploring or developing my interests or finding new ones?

PERSONAL STRENGTHS & ASSETS How am I exploring or developing my interests or finding new ones? Open mind Bad attitude Antisocial Afraid to try new things

RELATIONSHIPS How am I exploring or developing my interests or finding new ones? Your neighbor Your friends Your family All of the above

TECHNOLOGY How am I exploring or developing my interests or finding new ones? i. Pad The dishwasher Alarm clock Candy Crush Saga

COMMUNITY RESOURCES How am I exploring or developing my interests or finding new ones? Parks & Rec Department Miss Puff’s Driving School Police station Post office

ELIGIBILITY SPECIFIC How am I exploring or developing my interests or finding new ones? Department of Defense Senior Center HUD Social Security office

Three Buckets Key points: ¥ People need more than just goods/services to have a good life ¥ they also need information to understand a topic and make good decisions, ¥ and they might also need to talk to someone who’s been through something similar to get advice or emotional support

Policy & Systems Key points: ¥ ¥ NOTHING ABOUT ME WITHOUT ME Self-advocates and their families have to be at the table to drive the changes that are needed and have a voice in issues that affect them

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

Putting it All Together The Building Slides

Your Life. Course Portfolio Bringing it All Together

Katie • • • Well spoken and a good writer Great sense of style A good friend Nice to everyone Loves to help • Being independent • Having friends and spending time with people I care about • Being involved in People First • • Be positive and model what you’d like me to do Help me prepare in advance for activities and presentations so I know what to expect Katie’s One Page Profile

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.

David’s One Page Profile David • Independenc e • Family • Art • Apartment • My job • Being taken seriously • Star Wars

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 David • Patience • Sometimes need help to stay focused • Sometimes I need space • Can’t stand people clipping their nails

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

David’s One Page Profile David • • • Creative Personable and helpful Good writer Cheerful Funny • Independenc e • 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

• • • • Smartphon e Facebook Computer Glasses • • • Rachel Jackson Patty Katie’s Integrated Supports Star

• Good writer • Mustang convertible • Job > income • Apartment • Creative • Bicycle David’s Integrated Supports Star

¥ Your Integrated Supports Star Fill out your own personal strengths and assets

• Smartphone • Computer • Fitbit • Microwave • Kindle tablet • Glasses David’s Integrated Supports Star

¥ Your Integrated Supports Star Fill out your own technology part of the star

• Michael • Nathan • Mom and dad • Coworkers David’s Integrated Supports Star

¥ Your Integrated Supports Star Now fill in your relationships in the purple part of the star!

David’s Integrated Supports Star • • Library Center Price Chopper Bank of America Wendy’s • • •

¥ Your Integrated Supports Star Now fill in your relationships in the blue part of the star!

David’s Integrated Supports Star • Voc Rehab

¥ Your Integrated Supports Star Now fill in what you’re eligible for in the green part of the star! Need help? Use the Integrated Options Life. Course tool!

Using your Life. Course Portfolio to Get to your Good Life

How to use your Integrated Star ¥ ¥ Use the star to think through an everyday problem (ie: dinner) Use the star to help you think who could help you accomplish a goal (short term or long term) Use the star to help you see where you might need to build supports Use the star at your planning meeting to decide who could help you with your goals/outcomes

Using your Life. Course Portfolio to Advocate for your Good Life

When to use your Life. Course 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 personcentered 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.

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

Life. Course Drawing Bring your portfolio back for an extra ticket

Looking Forward

Life. Course Self-Advocacy Pioneers ¥ Advisory group in Missouri ¥ Self-advocates and supporters ¥ Piloting self-advocacy materials and training

Self-Advocacy Curriculum ¥ ¥ Based on Visual Planning and Decision-making Model Overall good life planning and then honing in on specific domains/issues

Pennsylvania/UMASS