Dreaming the Possible Together: Strategies for Charting a New Life Course Michelle “Sheli” Reynolds, SIBLING, PhD Missouri Family to Family Network UMKC Institute for Human Development University Center on Excellence in Developmental Disabilities February 19, 2014 About me… • Sibling of three brothers, one who is 30 year old with developmental disability • Supported the SelfAdvocacy Movement for 12 years • Director of Mo Family-toFamily Resource Center • Focus on policy and systems change focusing on LifeCourse and families Funded by National Partners States in the Community of Practice CT OK DC TN MO WA 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. Outcomes for Today • Overview of the Charting the Life Course Framework • Recognizing “all” people with disabilities • Setting a vision for the future • Importance of Life Experiences • Understanding Your Life Trajectory • Expanded understanding of “FAMILY” • Recognizing roles of all family members • Importance of Family Systems and Family Cycles • Ways to support families • Practical strategies for “dreaming the possible together” Focusing on ALL Why does this matter? Who are we talking about? All 4.7 Million people with developmental disabilities Who is usually talked about? 75% 25% National % Receiving State DD Services Oklahomans with Disabilities 60,277 estimated Oklahomans with Developmental Disabilities 73% 12% 15% (44,002) Enrolled State DD Services Waiting for State DD Services Based on 1.58% prevalence of 3.815 million citizens, US Census Who are the 73%? 60,277 estimated Oklahomans with Developmental Disabilities 73% 12% 15% (44,002) Individuals who: - Unaware of disability specific services - Do not want disability specific services - Have a diagnosis but don’t meet “eligibility criteria” Based on 1.58% prevalence of 3.815 million citizens, US Census 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. Framing & Reframing Making “the right to live, love, work, play and pursue life aspirations” a Reality for All 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….” • Why: Everyone has the right to live, love, work, play and pursue their life aspirations just as others do in their community. • How: Frame our thinking and actions around aspirations and visions, life expectations, family and life outcomes • What: Reframe what supports are available, who receives them and how they are provided to achieve life outcomes Framing & Re-framing Why How What How to make it Reality? Frame our thinking and actions around visions, life expectations, family and life outcomes 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, socio-economic, 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 For Repository of knowledge Lifetime commitment Provider of day-to-day care Material/Financial Caring About Facilitator of inclusion and membership Advocate for support Professionals Must Think Differently about Families “the people I support don’t have any family” “the families I work with are often a barrier” “families are too tired and overwhelmed” “families expectations are too high” “families expectations are too low” 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… 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 Why Uncharted Waters? Journey: Recognizing life is not static Exploring: identifying new options and possibilities Navigating together: Sharing responsibility Our overall compass is “quality of life” Charting a New Reality Charted Traditional or familiar Slightly Charted Tried but not norm Uncharted New or unfamiliar Unknown Not yet discovered •Removes value judgments and blame •Not a continuum, but current or historical options •Does not imply it is or isn’t available •Allows for comparison of where you are and where to go 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 well-being. Reframing Our Thinking Life Course Types of Supports Reframing Our Thinking Life Course Types of Supports Supports that Support All Roles Love, Affection & Self-Esteem Caring For Knowledge of History, Culture, Likes/Dislikes, Memories Lifetime commitment, Belonging Provider of day-to-day care Material/Financial Caring About Facilitator of inclusion and membership Advocate for support Supports for Creating a Vision 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 others? Supports that focus on Life Experiences Birth-----Early Child----School----Transition---Adulthood-------Aging “Anticipatory Guidance” Supports that Nudge Towards a Good Life Birth-----Early Child----School----Transition---Adulthood-------Aging Supports that Build and Integrate Many Different Types of Supports Community Resources Eligibility Specific Supports Relationship Based Supports Technology Supports What does this look like? Looking at My Families LifeCourse Everyone Has A Starting Point Vision of What I Don’t Want Long Term Daily Supports Vision for the Future Not Yet Discovered • A new possibility Uncharted • • • • Remote Monitoring Assistive Technology Time banks Human-service coops Slightly Charted • • • • Self-directed Services Respite Micro-boards Companion Model Charted • Staff hired by Provider Community Living: Housing Vision for the Future Not Yet Discovered • A new possibility Uncharted • • • • Own home Shared Living Space Co-op Environmental Adaptations Slightly Charted • Independent Supported Living Charted • Training Centers • Intermediate Care • Group Homes Daily Life: Employment Vision for the Future Not Yet Discovered • A new possibility Uncharted • • • • Micro-enterprise College/Tech Schools Career Military Slightly Charted • Supported Employment • Volunteerism • AmeriCorps/VISTA Charted • Sheltered Workshops • Day Habilitation Overall Quality of Life Vision for the Future Not Yet Discovered/Uncharted • • • • • • • Self-determination Emotional Well-being Personal Development Interpersonal Relationships Physical and Material Well-being Social Inclusion Rights Slightly Charted • Meaningful Roles • Normalization Charted • Health and Safety • Guardianship Our Uncharted Life What?? Reframe “policies and systems” that support “the right to live, love, work, play and pursue life aspirations” People with disabilities and their families… offer and receive support from each other and others in their community to enhance the well-being of all. Reframing Our Thinking Life Course 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 future. Reframing Our Thinking Life Course ALL: Public Health Framework Medical System Flu Shot Hand Washing Anti-Bacterial Soap Good Life for All Prevent Promote Person Centered Services Disability Policy, Practices and Culture Community Family Person with Disability Uncharted with Supports Community Family Disability Services Person with Disability Charted Birth-----Early Child----School----Transition---Adulthood-----Aging Comprehensive, Integrated and Coordinated Vision Across LifeCourse 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 have the right to live, love, work, play and pursue their life aspirations just as others do in their community. Connect with the Community Learn about policies and practices for supporting families, connect with the Community of Practice, and share your ideas about supporting families: Sign up for our mailing list at supportstofamilies.org Visit our website at supportstofamilies.org Like us on Facebook at facebook.com/supportstofamilies Follow us on Twitter at twitter.com/familieswithidd Contact Information Sheli Reynolds 816.235.1759 [email protected]
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