Strategies for Charting a New Life Course Family

Strategies for Charting a New Life Course Family to Family Quarterly Stakeholders February 27, 2014

Welcome

Project Goal To build capacity through a community of practice across and within States to create policies, practices and systems to better assist and support families than include a member with I/DD across the lifespan. Project Outcome • State and national consensus on a national framework and agenda for improving support for families with members with I/DD. • Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families. • Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.

States in the Community of Practice CT OK D C T N MO W A

Outcomes for Today • • Bring together “like minded” stakeholders Share ideas and innovative practices Learn about national and state initiatives Formalize a “network” working together on the same cause • Share ideas • Overview of the Charting the Life Course Framework

Our Network Learn about our stakeholders and organizations

Joining Forces for a New Vision 1950 s Parent--Family 2007’s Siblings Communi ty 1960 s State Service Systems 1980 s Medicaid Waiver 1970 s Self-Advocacy 2000 s Community Family Person with Disability

Network Levels

Affiliate Network by Regions

The Golden Circles Why How What Simon Sinek http: //www. startwithwhy. com/

The Golden Circles “Nobody ever comes along because of what you do or how you do it. They come along because of why you do it. And because you believe in why you are doing it. And if they can find a way to believe in the same thing, then they will come along with you. Not for you, but for themselves. Because they believe it too. ” Simon Sinek http: //www. startwithwhy. com/

“It’s not what you do or how you do it, its WHY you do it” Remember Martin Luther King Jr. did not give an “I have a plan” speech. He told people he had a dream. He told them what he believed. And they believed too. Not for him but for themselves. ” Simon Sinek

Our “I have a Dream…. ” Everyone has the right to live, love, work, play and pursue their life aspirations just as all citizens in their community.

The Golden Circles

Framing & Reframing Making “the right to live, love, work, play and pursue life aspirations” a Reality for All

Focusing on ALL Why does this matter?

Who are we talking about? All 4. 9 Million people with developmental disabilities

Who is usually talked about? 75% 25% National % Receiving State DD Services Individuals who: - Unaware of disability specific services - Do not want disability specific services - Have a diagnosis but don’t meet “eligibility criteria”

Missourians with Disabilities 95, 498 estimated Missourians with Developmental Disabilities 62, 498 65% 33, 300 35% Division of Developmental Disability Services Based on 1. 58% prevalence of 6, 044, 171 citizens, US

Missourians with Disabilities 95, 498 estimated Missourians with Developmental Disabilities 65% (62, 498) 19% 13% 3% ICF/DD Enrolled HCBS DD Services State DD Services Targeted Case Management Based on 1. 58% prevalence of 3. 815 million citizens, US

More info about Missouri Age 0 -5 6 -18 19 -64 65 Total MO Population 362, 650 (6%) 1, 045, 641 (17. 3%) 3, 747, 386 (62%) 888, 537 (14. 7%) Approx. DD (1. 58%) 5729 16, 521 59, 209 14, 038 Total Served by DDD 2, 014 9, 966 21, 571 1, 200

More info about Missouri Age 0 -5 6 -18 19 -64 65 Total MO Population 362, 650 (6%) 1, 045, 641 (17. 3%) 3, 747, 386 (62%) 888, 537 (14. 7%) Disability or SHCN (22%) 79, 783 230, 041 824, 424 195478 DD (1. 58%) 5729 16, 521 59, 209 14, 038

Outcomes for ALL What will this look like?

People with disabilities and their families have the right to live, love, work, play and pursue their life aspirations just as others do in their community.

How to make it Reality? Frame our thinking and actions around visions, life expectations, family and life outcomes

People with disabilities and their families… will have opportunities across the life course and the many facets of life to participate as full citizens in the community. Reframing Our Thinking Life Course

Think about your life…. . Community Family Person

INDIVIDUALS live within the context of THEIR FAMILY

Individuals Are Part of a Family System

Defining FAMILY Family are those people who… Consider themselves a family (whether or not they are related by blood or marriage) and support and care for each other on a regular basis This is not dependent on where they live. (Turnbull and Turnbull, KU Beach Center)

Lifelong Impact of Family on Individual Biologically: Likes, dislikes, skills, abilities Environmentally: Neighborhood, socioeconomic, education Socially: Family and friend network, connection with community members Policy: Dreams, Aspirations, House rules, cultural rules, expectations

Recognize All Family Member Stages Family System has a Family Cycle

Reciprocal Roles of Family Affection & Self-Esteem Caring About Repository of knowledge Lifetime commitment Provider of day-to-day care Material/Financial Caring For Facilitator of inclusion and membership Advocate for support

What? ? Reframe “supports”…. what are they and how they are provided to achieve life outcomes

With the best intentions…. . Community Family Services Person with Disability

Real Lives, Real Supports Community Family Person with Disability

People with disabilities and their families… have access to resources and supports, that are person and family centered and directed, that enhance individual lives and maintain the family Reframing Our Thinking Life Course

Types of Supports Reframing Our Thinking Life Course

Types of Supports

Supports for Creating a Vision of What I Want for a Quality of Life Vision of What I Don’t Want

Supports to Understand What is Possible DAILY LIFE: What do I do during the day? COMMUNITY LIVING: Where do I live? SOCIAL & SPIRITUAL: How do I stay connected to my friends and my spirituality? HEALTHY LIVING: How do I stay mentally and physically healthy? SAFETY AND SECURITY: How do I feel safe? CITIZENSHIP AND ADVOCACY: Am I able to speak up for myself and

Supports that focus on Life Experiences Birth-----Early Child----School----Transition---Adulthood------Aging “Anticipatory Guidance”

Supports that Nudge Towards a Good Life y r o ct e v i t i s Po e j a Tr Birth-----Early Child----School----Transition---Adulthood------Aging

Supports that Build and Integrate Many Different Types of Supports Community Resources Relationshi p Based Supports Eligibility Specific Supports Technology Supports

People with disabilities and their families… offer and receive support from each other and others in their community to enhance the wellbeing of all. Reframing Our Thinking Life Course

What? ? Reframe “policies and systems” that support “the right to live, love, work, play and pursue life aspirations”

ALL: Public Health Approach Medical System Flu Shot Hand Washing Anti-Bacterial Soap

Good Life for All ? ? Eligibilit y Based Support s

Disability Policy, Practices and Culture Communit y Family Person with Disability Uncharted with Supports Commun ity Family Disability Services Person with Disability Charted Birth-----Early Child----School----Transition---Adulthood-----Aging

Comprehensive, Integrated and Coordinated Vision Across Life. Course Pediatrician, Families and Friends, Faithbased IDEA Part C, Parents as Teachers, Health, Headstart School, Special Education, Health, Recreation Vocational Rehab, Health Employment, College, Military Disability Services, Health, Housing, College, Careers Retirement, Aging System, Health

People with disabilities and their families… will share responsibility with policy makers for the wise use of public dollars to assure that the diverse needs of all families and individuals can be met now and in the Reframing Our Thinking Life Course

What does this look like? Applying the Life Course Framework

Everyone Has A Starting Point Vision of What I Don’t Want

People with disabilities and their families have the right to live, love, work, play and pursue their life aspirations just as others do in their community.