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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
reynoldsmc@umkc.edu