1. Charting the LifeCourse
Towards empowerment, inclusion and self-determination
Michelle “Sheli” Reynolds, SIBLING, PhD
Missouri Family to Family Network
UMKC Institute for Human Development
University Center on Excellence in Developmental Disabilities
June 11 , 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 Share ideas, learn from one another
Provide ideas and a framework that will help reframe how you think about “the problem” and identify new solutions
Focus on “real life experiences” can impact the trajectory to a “good life”
Highlight the significant role families play in its members lives

7. 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”

8. 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

9. Focusing on ALL
Why does this matter?

10. Who are we talking about?
All 4.9 Million people with developmental disabilities
(1.58%)

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

12. Life 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
Type of Change Needed to Make this a Reality?

15. Type of Change that is Needed
Transitional CHange
Transformation Change
“Retooling” the system and its practices to fit the new model Mergers, consolidations, reorganizations, revising systematic payment structures, creating new services, processes, systems and products to replace the traditional one
Fundamental reordering of thinking, beliefs, culture, relationships, and behavior
Turns assumptions inside out and disrupts familiar rituals and structures
Rejects command and control relationships in favor of co- creative partnerships
Creating Blue Space, Hanns Meissner, 2013

16. Reframing Attitudes and Behaviors
Frame our thinking and actions around visions, life expectations, family and life outcomes

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

18. INDIVIDUALS live within the context of THEIR FAMILY

19. Lifelong Impact of Family
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

20. 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)

21. There are FAMILY CYCLES!!
The FAMILY is a SYSTEM!!
There are FAMILY CYCLES!!

22. Reciprocal Roles of Family Members
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

23. 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”

24. Reframing Thinking about Supports
What types of supports are needed and what is their role in achieving life outcomes

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

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

27. Types of Supports

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

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

30. Supports to Help you 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?

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

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

33. Integrating Support Strategies: Not only focusing on specialized services

34. Reframing Systems
Reframe “policies and practices” that support “the right to live, love, work, play and pursue life aspirations”

36. Focus on Life Outcomes for All not just Service Options for Some

37. Think Across Generations

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

39. Develop Framework for ALL to Guide Your Work
Eligibility Based Supports
-Family and Self-Advocacy Networks
-Inclusive education with supports
-Adaptive equipment
-Universally designed and affordable homes
-Grocery carts for older kids
-EMT and Police knowledgeable and supportive
-Strong families and friends to share lives with
-Inclusive and accepting spiritual and recreational opportunities

40. Organize Culture, Policy and Practices to Focus on Life Outcomes
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

41. Create Comprehensive, Integrated and Coordinated Systems Across Life Domains
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

42. 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. 

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

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

45. 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

46. 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

47. 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

48. Eric’s “Good Life”

49. Our Families “Good Life”

50. 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

51. Contact Information Sheli Reynolds