1. 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

2. 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

3. Funded by
National Partners

4. States in the Community of PracticeDC CT MO WA OK TN

5. 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.

6. 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”

7. Focusing on ALL
Why does this matter?

8. Who are we talking about?
All 4.7 Million people with developmental disabilities

9. Who is usually talked about?
75%
25%
National % Receiving State DD Services

10. 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 million citizens, US Census

11. 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 million citizens, US Census

12. Outcomes for ALL
What will this look like?

13. 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. 

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

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

16. 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

17. “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

18. 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

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

20. Think about your life…..
Community
Family
Person

21. INDIVIDUALS live within the context of THEIR FAMILY

22. Individuals Are Part of a Family System

23. 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)

24. 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

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

26. 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

27. 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”

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

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

30. Real Lives, Real Supports
Community
Family
Person with Disability

31. 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

32. 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”

33. 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

34. 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

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

36. Types of Supports

37. 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

38. 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

39. 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?

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

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

42. 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

43. What does this look like?
Looking at My Families LifeCourse

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

46. 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

47. 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

48. 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

49. 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

50. Our Uncharted Life

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

53. 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

54. 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

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

56. Good Life for All
Person Centered
Services
Prevent
Promote

57. 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

58. 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

59. 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. 

60. 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

61. Contact Information Sheli Reynolds