LifeCourse Self-Advocacy

LifeCourse Self-Advocacy
Charting the LifeCourse 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 and advocate Barbara’s granddaughter

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

Objectives Learn how self-advocates across the nation are learning about the principles of the framework See examples of how self-advocates are using LifeCourse 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 LifeCourse
Teaching the Principles

ALL How we introduce this: “The Charting the LifeCourse 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 Have everyone stand up and count off 1-4. Have 1-3 sit down after everyone is counting. Everyone who’s left standing are the only ones getting services.

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 is the foundation of the LifeCourse framework. Let’s all read the blue box. 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 self-advocates 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 Think about

What Life Looks Like

History of People with I/DD

What We Want to See…

What We Want to See… The stars help us have a good life, and the trajectory is how we get there

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? Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.

Where would I like to live? Will I live alone or with someone else?
Community Living Where would I like to live? Will I live alone or with someone else? Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.

Safety & Security How will I stay safe from financial, emotional, physical or sexual harm? Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.

How will I live a healthy lifestyle and manage health care supports?
Healthy Living How will I live a healthy lifestyle and manage health care supports? Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.

Social & Spirituality How will I connect with spiritual and leisure activities, and have friendships and relationships? Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.

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? Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.

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

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 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! 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

Katie’s Good Life Trajectory
VISION FOR GOOD LIFE Help other people with disabilities My own place Get married Get my journalism degree People First of Missouri Moved in my own place Started college at State Fair Trajectory toward a good life Katie Kinder Special ed classes Vision of What I Don’t Want To be labelled To be unhappy Trajectory towards things you don’t want

Katie’s Trajectory 30 Help other people with disabilities My own place
Started college at State Fair Got involved with People First and self-advocacy 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 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.

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 only on one source of support for all of our needs Having a vision is very important. But nobody can do anything alone. We all use supports to make our daily lives possible. How many of you used an alarm clock to wake up this morning? How many of you use the bus to get around when you’re at home? How many of you have a PCA or support staff? These are just some examples of supports people use. So today, we are going to focus on the Integrated Supports Star.

Integrated Services and Supports
If you came yesterday, you remember our vision for people with DD and their families having good lives is being part of their families and communities with the supports and services they need, when and where they need them. Now, we are going to teach you about each part of the star.

Integrated Supports PERSONAL STRENGTHS & ASSETS
What can you personally bring to the table? Personality traits Skills or training that you have Belongings that own or things you have access to What are some examples of personal strengths and assets you have or can think of?

Integrated Supports The next part of the star is TECHNOLOGY
How can technology help you be more independent? Simple machines like toasters, alarm clocks Smartphones Assistive technology Internet and computers What are some examples of technology that you use to help you get through your day?

Integrated Supports The next part of the star is RELATIONSHIPS
Who do you have in your life that cares for you and can help you? Family Friends Close personal relationships (like your neighbor, boss, pastor coworkers, etc) Who is important to you in your life?

Integrated Supports COMMUNITY RESOURCES
Businesses, places, and things anyone can access where you live: School Library Park Police station Hospital Church Grocery Store Where are some places you know where everybody knows your name?

Integrated Supports ELIGIBILITY SPECIFIC OR PAID SUPPORTS
Things you have to have a diagnosis, certain income, or other qualification (like age, gender, or race) for Food stamps Housing Voucher DD Services Medicaid Medicare What are some examples of services you might qualify for based on a label?

Integrated Supports INTRODUCE BASKETS
Remember, to have a good life, we have to use integrated supports. We have to use all part of the star. David – spreads his eggs out across his baskets Rachel – puts all her eggs in the green basket

Relying ONLY on Yourself
Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions None of us are superman. If you did everything all day long for yourself… you would be very tired. AND lonely! Yourself

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

Relying ONLY on Family & Friends

Relying ONLY on Technology
Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions You can’t sit around playing video games or hanging out on facebook all day… it’s not as fulfilling as what you could be enjoying out in the world What if the power goes out? What happens when the grid goes down? Will you be ready in the event of a zombie apocalypse? Technology

Focusing ONLY on Eligibility Supports
Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom STORY about family asking permission for their son (who doesn’t receive services for housing) to move into his own apartment OATS bus - Eligibility Supports Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions

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

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 Contestant #2

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

PERSONAL STRENGTHS & ASSETS
How can I make home modifications to live as independently as possible as I age? Lottery ticket Money in savings Dishwasher Good at mopping the floor

Your five-year old niece Your handy neighbor Joe
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, great aunt Eunice

MO Assistive Technology Show Me Loans
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

Home remodeling company
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

Navy recruiter’s office
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 Change circle- change where circle lands

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

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? iPad 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 You guys are great at this! You are definitely pros at integrated supports! 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 A recap or a quick overview

RACHEL: Now, we are going to build the LifeCourse circle. To us, the LifeCourse circle represents the good life. We start with the person-

RACHEL: Part of the good life is being part of a family. All people have a family (whether you like them or not, or even if you don’t see them often or at all). YOU define who your family is. It could be people you are related to biologically or just your friends and neighbors.

RACHEL: How many times have you heard “healthy” and “safe?” How often are you asked if you are actually happy? If you like where you live, who you live with, and what you do during the day? We believe that there is more to having a good life than just being healthy and safe. We believe the conversation needs to change so that people can have a really good life. Instead of checking boxes on a list like water temperature and making sure all the right forms, we need to start looking at things with a new lens and asking things like Will I have a job? Where will I live? Who will love and look out for me?

RACHEL: Part of having a good life is making sure all of our needs are met. We KNOW that people and their families need more than goods and services. We aren’t saying that goods and services aren’t important. We are saying that families have additional needs that need to be met. The first bucket is Information (or Discovery and Navigation). Sometimes, we don’t need anything but information about a topic so we can make a decision or simply know what’s going on. The second bucket is Connecting. We have learned that people and family members benefit from talking to others who have in their shoes and can relate to what they might be going through at that time. Finally, Goods and Services are those things that we connect with to make our daily lives possible. They can be as simple as your alarm clock or as complex as applying for formal services. We always want to make sure we are filling all of our buckets, not just dropping everything into the goods and services bucket.

The final part of the LifeCourse circle is Integrated Supports.

We ALL access a variety of supports to make it through our daily lives – we draw on our own knowledge and skills, we get help from other people, we use technology, and we get services and supports in the community. In order to have a good life, we need to have lots of different types of supports. This is the Integrated Supports Star. The Integrated Star represents getting the support we need to have a good life. We are going to learn more about the star in a hot second.

SAY: The line pointing toward the LifeCourse Circle is the trajectory. 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.

And finally, we want a good life for all people, no matter what age or stage they might be facing!

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

Katie’s One Page Profile
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

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

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

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

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

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

Katie’s Integrated Supports Star
Smartphone Facebook Computer Glasses Rachel Jackson Patty

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

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

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

Fill out your own technology part of the star

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

Now fill in your relationships in the purple part of the star!

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

Now fill in your relationships in the blue part of the star!

Voc Rehab David’s Integrated Supports Star

Now fill in what you’re eligible for in the green part of the star! Need help? Use the Integrated Options LifeCourse tool!

Using your LifeCourse Portfolio
to Get to your Good Life Even just putting on paper can help you become more aware of the supports that you have or the supports that you might need- you might have noticed that one of your parts of the star is kind of empty.

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 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

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

Looking Forward

LifeCourse 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

LifeCourse Self-Advocacy

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