MISSOURI FAMILY TO FAMILY Strategies for the Good Life Integrated supports across the LifeCourse

OBJECTIVES Learn about MOF2F and the supports we offer individuals, families, professionals and organizations Understand the principles of the LifeCourse framework See how the framework is applied at the individual/family planning as well as the practice and policy levels

ABOUT ME Friend to & advocate for Calvin MPA, Nonprofit Management Focus: Communications & Design

WHO WE ARE We are a statewide network of families offering free supports to people with disabilities and their families across the lifespan. Missouri Family to Family Health Information Center Housed at the UMKC Institute for Human Development, University Center for Excellence in Developmental Disabilities Parent to Parent USA Alliance Member

MISSION & VISION Why do we do what we do? We want to live in a world where everyone is: valued and treated with respect, fairness and equality included in their communities given opportunities to dream, achieve success and change the world. We believe that the F2F Network provides opportunities to: share new and diverse ideas inspire and strengthen our individual capacity form a strong team to change the world together

OUR FUNDERS & PARTNERS HOUSED AT FUNDED BY

PROJECTS & PROGRAMS

WHY ARE WE HAVING THIS CONVERSATION? THE TIMES THEY ARE A-CHANGIN’ Shifting demographics & Changing Paradigms "Bob Dylan 1991" by Xavier Badosa - flickr. Licensed under CC BY-SA 3.0 via Wikimedia Commons -

SERVICES AND SUPPORTS ARE EVOLVING

WHAT WE KNOW ABOUT CURRENT REALITIES? Expectations, Values, Culture Capacity of Work Force Federal Budget Demand for Services Federal Policy

WARNING TO HUMANITY “We, the undersigned senior members of the world’s scientific community, herby warn all humanity of what lies ahead. A great change in our stewardship of the earth and the life on it is required, if vast human misery is to be avoided and our global home on this planet is not to be irretrievably mutilated…” World Scientists' Warning to Humanity (1992). Union of Concerned Scientists in Cambridge, Massachusetts.

THE LIFECOURSE FRAMEWORK Strategies for the Good Life

All people have the right to live, love, work, play and pursue their dreams in their community.

FOCUS ON “ALL” 100% All 4,900,000 people with developmental disabilities ** Based on national definition of developmental disability with a prevalence rate of 1.49% 75% National % Receiving State DD Services 25% Only 1 in 4 people with DD receive services

ALL PEOPLE ARE PART OF A FAMILY

Trajectory towards Outcomes Trajectory towards things unwanted Friends, family, self-determination, community living, social capital and economic sufficiency Vision of What I Don’t Want Across the Lifespan TRAJECTORY TOWARD POSITIVE LIFE OUTCOMES

Birth-----Early Child----School----Transition---Adulthood Aging “Anticipatory Guidance for Life Experiences” “Chores and allowance” “Birthday parties with friends” Learning to say “no” “Playing sports or an instrument” “Volunteering at church”“Making mistakes” FOCUSING ON LIFE EXPERIENCES

THINK ACROSS LIFE DOMAINS Life outcomes, not service outcomes

THREE BUCKETS Discovery & Navigation (Information and Training Connecting & Networking (Talking to Someone that has been there) Goods & Services (Day to Day, Medical, Financial Supports)

INTEGRATED SUPPORTS ACROSS THE LIFECOURSE i-pad/smart phone apps, remote monitoring, cognitive accessibility, adaptive equipment school, businesses, church/faith based, public transportation, parks and recreation SHS services, Special Ed, Medicaid, section 8, Food Stamps, Vocational Rehab (VR family, friends, neighbors, co- workers, community members, church members person or family resources, abilities, strengths, characteristics

POLICY & SYSTEMS People and their families direct supports, influence the planning, policy, implementation, evalution and revision of practices

A GOOD LIFE

INDIVIDUAL & FAMILY LEVEL LifeCourse Tools for Planning and Creating a Vision for the Good Life Meet Ben

BEN Ben is 25 years old and lives at home with his parents. He had very little experience being by himself. Through the use of his iPad (apps to occupy him as well as FaceTime to communicate with people he trusts) he is able to stay alone for up to an hour now (previously it was only five minutes). Using technology increased his personal assets & strengths. Family helped him set up a Facebook page so he can talk to his friends (which increased his relationships).

Ben’s Trajectory iPad Facetime Facebook page Digital watch Vibrating toothbrush

Ben’s Omni bus, Walmart, 24 Hour Fitness, library, Price Chopper, Dr. T., St. Ann’s church, ES Fire Dept, joint bank account, direct deposit, Power of attorney Dad, Mom, Matt, Zac, Ali, Chad, Ericka, Sheli, Firemen friends, Ange, Pam, Wally, Josh B., Matt S., Mike, Nick, Scouting friends PCA –DDD, self- directed supports Social Security, Medicaid, Special Needs Trust Outgoing personality, friendly, Eagle Scout, can ride city bus Ben’s Integrated Supports Star iPad Facetime Facebook page Digital watch Vibrating toothbrush

INTEGRATING SUPPORTS INTO REAL LIFE

BEN’S INTEGRATED ACTIVITIES Personal Assistant Plan

PROFESSIONAL LEVEL Using LifeCourse Tools to Help Individuals & Families and Organize Your Job

WHO IS USING LIFECOURSE TOOLS? Direct Support Professionals Information & Referral Staff Vocational Rehabilitation  PETS (Pre Employment Transition Specialists)  Employment Specialists School Districts  Special Ed Teachers  School Counselors State DD System  Employment & Youth Transition Specialists  Support Coordinators Daily Life: Focus on Employment Domain Booklet

PRACTICE LEVEL The LifeCourse Framework, Transformational Change and Strategic Planning

ORGANIZATIONAL STRATEGIC THINKING: LOQW AND PCS

POLICY LEVEL The LifeCourse Framework and Systems Change

MISSOURI QUALITY OUTCOMES

THE LIFECOURSE FRAMEWORK IS Universally designed for all citizens to use Created to help individuals and families (as well as professionals) troubleshoot and problem-solve life About having conversations – reframing the way we talk with families ISN’T The end all be all to solving your problems a replacement for Person- Centered Planning, but a complement

QUESTIONS, COMMENTS, COMPLAINTS Just kidding about the complaints part

FOR MORE INFORMATION Visit us online at mofamilytofamily.org

CONTACT RACHEL K. HILES, MPA