Getting to Your Good Life Welcome! We’re so glad you came to our session, Getting to Your Good Life! Getting to Your Good Life Real Voices, Real Choices August 22, 2016

Welcome Introductions RACHEL: My name is Rachel Hiles and I work at the Institute for Human Development at UMKC. I’ve been involved in PF at all different levels for over 10 years now. I recently graduated with my master’s of Public Administration. I am also guardian for my friend Calvin, who lives in Kansas City and take care of my grandma so she can stay in her home. Katie, would you like to tell the audience a little about yourself? KATIE: My name is Katie Kinder. I’m live in Columia and I’m the member of my local chapter there as well as the statewide secretary of PFMO. I am also on the board of MO Protection & Advocacy and PAMI.

Outcomes Learn a strategy for problem-solving daily tasks and responsibilities and accomplishing big vision, long term goals Learn how to use the LifeCourse tools to get to your good life. RACHEL: Our goals for our time together this afternoon are to Learn about a new way of thinking that we’ve been working on at MO Family to Family that will help you plan for a good life Understand what a “trajectory” is and how the choices you make, the things that happen to you, and the people around you affect your trajectory to a good life We’re going to play Cliffhanger and we’re going to actually see the idea of the trajectory in action

First show the person, Then show the family, then bring up the domains And then the buckets And then the outer layers All these things work together to make a good life.

Life Trajectory Life Experiences RACHEL: Now we’re going to talk about the trajectory. Katie ASK Does anybody know what a trajectory is?

What is YOUR Vision for a Good LIFE? Ask the group Who said: Family/friends; vacations, pets, chocolate, etc How many people said: Good Behavior Plan???? EVERYBODY “gets” what “good life” means --HCBS new rule – plan must be understood by individual and reflect their goals and preferences Write down your responses on your worksheet and discuss with your table

What DON’T you want?? Who said: Poverty, isolation, segregation, loneliness? Ask the group for anything else they put there that hasn’t already been said. Family sometimes cant envision the good life – too many barriers, always a fight. But they can almost always tell you what they DON’T want! Write down your responses on your worksheet and discuss with your table

Life Experiences and Life Transitions Chores and allowance Summer jobs, babysitting Learning to say “no” Making Mistakes Playing sports or an instrument Birthday parties with friends My parents have passed away, what do I do? Scouts, 4H, faith groups Parents Turn 65 Medicare & SSDI --Life experiences – are how we get ready for the next phase – having chores as a child helps prepare you for employment. Having an allowance helps you learn about money (and making mistakes with money). Learning to say NO helps the person learn to protect themselves. --ANTICIPATORY GUIDANCE—especially at times of transition. Doctors do it all the time. IE- we don’t start talking about Employment until age 14! But we can nudge people at age 2 or 5 or 10 – chores, summer job, volunteering, asking child what they want to be, learning about lots of options --Show them the LC Experiences booklet – talk about how people might use it. --SAFETY – people don’t stay safe because someone has always protected them. They need to learn skills! -- --Think beyond systems transitions ONLY Living Adult Life Transition planning Turning 18. Leaving school at 18 or 21 “Anticipatory Guidance for Life Experiences” Leaving Early Childhood/ enter school Getting New Diagnosis

job I like, home, faith, vacations, health, choice, freedom Dignity of Risk and Mistakes Friends, family, enough money, job I like, home, faith, vacations, health, choice, freedom -People need to be allowed to take risks and make mistakes – and not pay for it forever. We all make mistakes, have consequences, and move past it – but PWD often are labeled or restricted for life if they make even a simple mistake. “fire-starter” “sexual predator” “can’t use the internet” -Person doesn’t learn to STAY SAFE if someone is always protecting them from everything! Learn how to stay safe by having life experiences – learning to say NO; learning who to trust or not; Poverty, loneliness, segregation, restrictions, lack of choice, boredom

Integrated Supports For a Good Life

Integrating Services and Supports 75% People with I/DD not receiving formal DD services 25% People with I/DD receiving formal DD services 100% People with I/DD receiving integrated services and supports

Integrated Supports STAR resources, skills, abilities characteristics i-pad/smart phone apps, remote monitoring, cognitive accessibility, Adaptive equipment family, friends, neighbors, co-workers, church members, community members MAPPING PROBLEM SOLVING PLANNING LTSS PLANNING ACTIVITIES We ALL do this without even thinking about it 100% school, businesses, church faith based, parks & rec, public transportation SHS services, Special Ed, Medicaid, Voc Rehab, Food Stamps, Section 8 R

Personal Strengths & Assets person or family resources, abilities, strengths, characteristics What do you have that will help you? Personality traits Skills or training that you have Belongings that own or things you have access to

Relationships Who do you have in your life to help you? Family Friends family, friends, neighbors, co-workers, community members, church members Who do you have in your life to help you? Family Friends Close personal relationships (like your neighbor, boss, pastor coworkers, etc)

Technology How can technology help you be more independent? i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment How can technology help you be more independent? Smartphones Assistive technology Internet and computers

Community-Based Businesses, places, and things anyone can access where you live: School Library Park Police station Hospital Church Grocery Store school, businesses, church/faith based, public transportation, parks and recreation

Eligibility Specific 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 SHS services, Special Ed, Medicaid, section 8, Food Stamps, Vocational Rehab (VR)

We have to use all parts of the star! MAPPING PROBLEM SOLVING PLANNING LTSS PLANNING ACTIVITIES We ALL do this without even thinking about it

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

Daily Routine Morning or Evening Activity 7: Integrated Supports Star large group discussion: Large 11x17 Star worksheet Ask participants to call out the things they use to get through their day. IE: what types of supports do you use to get through your morning routine or evening routine? (5 minutes)

Daily Routine List List List List List Morning or Evening What did we come up with? Morning or Evening Activity 7: Integrated Supports Star large group discussion: Large 11x17 Star worksheet Record the things used to accomplish the routine on the flip chart or poster board as they call it out Facilitate large group discussion, lead, nudge or pull them to the realization that we all use integrated supports every day? List List

LifeCourse Star to Calendar

Ben’s Services & Supports Ben’s Services and Supports Mom, Dad Ben’s Services & Supports DDD Self-Directed waiver PCA staff; Medicaid; Special Needs Trust

Ben’s Services and Supports Able to stay home alone for up to an hour; has & can use i-pad; i-pad when home alone; digital watch Mom, Dad, Matt, Zac, Ali, Chad, Ericka, Roy, Carol, Nick, Spohn, Ben’s Services & Supports Firemen at ESFD; coaches & staff at ES high school; Omni bus; DDD Self-Directed waiver PCA staff; Medicaid; Special Needs Trust

Your LifeCourse Portfolio Bringing it All Together RACHEL: Now we’re going to talk about the trajectory. Katie ASK Does anybody know what a trajectory is?

Katie’s One Page Profile Well spoken and a good writer Great sense of style A good friend Nice to everyone Loves to help Katie’s One Page Profile

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

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

Your Life Trajectory Holistic view of person – their past experiences and what they are working on now and in the future to achieve their good life and avoid the things they don’t YOU have – inside LC portfolio --explain how to use---start with AGE (can use with ANY AGE); Good Life/not good life boxes; past life experiences good and not good; future life experiences – goal planning.

Katie’s Integrated Supports Star Smartphone Facebook Computer

Your Integrated Supports Star Need help? Use the Integrated Options LifeCourse tool!

Questions, Reflections and Discussion As you can see, the good things Frank did for himself put him on a positive trajectory towards a good, happy, healthy, life. All that McDonald’s and Pepsi set him on a negative path but he did things to fix em. When he forgot to pay his light bill, he and his supporters worked together to find a solution that would help him stay independent and keep control over his life. When Frank joined up with PF, he was able to solve a problem in his community for people with disabilities. Do you have any questions? Comments? Complaints?

LifeCourseTools.com

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

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