Michelle “Sheli” Reynolds, SIBLING, PhD 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 Dreaming the Possible Together:  Strategies for Charting a New Life Course

About me… Sibling of three brothers, one who is 30 year old with developmental disability Supported the Self- Advocacy Movement for 12 years Director of Mo Family-to- Family Resource Center Focus on policy and systems change focusing on LifeCourse and families

Funded by National Partners

States in the Community of Practice DC CT MO WA OK TN

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 15% 73% (44,002) 12% Enrolled State DD Services Waiting for State DD Services Based on 1.58% prevalence of 3.815 million citizens, US Census

60,277 estimated Oklahomans with Developmental Disabilities Who are the 73%? 60,277 estimated Oklahomans with Developmental Disabilities 15% 73% (44,002) 12% 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.   It’s as simple as that.  No more and no less.  And if you believe that, as I do, then you might be the type of person who believes that in this future individuals with disabilities and their families: Ought to be Are in charge of the supports they receive to the extent they can be. Ought to Have opportunities across their life course and the many facets of their life to use resources flexibly and in ways that enhance their lives and help them to participate in their communities. May Offer support to each other and others in their community to enhance the well-being of all.  Have a shared 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. 

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

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

Framing & Re-framing 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 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 Policy: Dreams, Aspirations, House rules, cultural rules, expectations Environmentally: Neighborhood, socio-economic, education Socially: Family and friend network, connection with community members

Family System has a Family Cycle Recognize All Family Member Stages Family System has a Family Cycle

Reciprocal Roles of Family Caring About Affection & Self-Esteem Repository of knowledge Lifetime commitment Caring For Provider of day-to-day care Material/Financial 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

Reframing Our Thinking 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. Life Course vision for real lives -real life experiences -recognzies person within context of their family

Our overall compass is “quality of life” 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”

Traditional or familiar 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 Removes value judgments and blame Not a continuum, but current or historical options

Reframing Our Thinking 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.   Life Course vision for real lives -real life experiences -recognzies person within context of their family

Reframing Our Thinking Types of Supports   Life Course vision for real lives -real life experiences -recognzies person within context of their family

Types of Supports

Supports that Support All Roles Caring For Love, Affection & Self-Esteem Knowledge of History, Culture, Likes/Dislikes, Memories Lifetime commitment, Belonging Caring About Provider of day-to-day care Material/Financial Facilitator of inclusion and membership Advocate for support

I Want for a Quality of Life 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?

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

Supports that Nudge Towards a Good Life Positive Trajectory Birth-----Early Child----School----Transition---Adulthood-------Aging Positive Trajectory

Supports that Build and Integrate Many Different Types of Supports   Relationship Based Supports Community Resources Eligibility Specific Supports Technology Supports vision for real lives -real life experiences -recognzies person within context of their family

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”

Reframing Our Thinking 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. Life Course vision for real lives -real life experiences -recognzies person within context of their family

Reframing Our Thinking 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.   Life Course vision for real lives -real life experiences -recognzies person within context of their family

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

Good Life for All Person Centered Services Prevent Promote

Uncharted with Supports Disability Policy, Practices and Culture Community Family Person with Disability Uncharted with Supports Community Family Disability Services Person with Disability Systems…………….childhood=pediatricians……………………aging 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 Systems…………….childhood=pediatricians……………………aging Trajectory towards a life in the community 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.   It’s as simple as that.  No more and no less.  And if you believe that, as I do, then you might be the type of person who believes that in this future individuals with disabilities and their families: Ought to be Are in charge of the supports they receive to the extent they can be. Ought to Have opportunities across their life course and the many facets of their life to use resources flexibly and in ways that enhance their lives and help them to participate in their communities. May Offer support to each other and others in their community to enhance the well-being of all.  Have a shared 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. 

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 Like us on Facebook at facebook.com/supportstofamilies Follow us on Twitter at twitter.com/familieswithidd

Contact Information Sheli Reynolds 816.235.1759 reynoldsmc@umkc.edu