LifeCourse Towards empowerment inclusion and selfdetermination Michelle Sheli Reynolds SIBLING PhD Missouri Family to Family Network UMKC Institute for Human Development University Center on Excellence in Developmental Disabilities ID: 586645
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Charting the LifeCourseTowards empowerment, inclusion and self-determination
Michelle “Sheli” Reynolds, SIBLING, PhD Missouri Family to Family NetworkUMKC Institute for Human DevelopmentUniversity Center on Excellence in Developmental DisabilitiesMay 29 , 2014Slide2
About me…Sibling of three brothers, one who is 30 year old with developmental disabilitySupported the Self-Advocacy Movement for 12 years
Director of Mo Family-to- Family Resource CenterFocus on policy and systems change focusing on LifeCourse and familiesSlide3
Funded by National PartnersSlide4
States in the Community of Practice
DCCTMOTNWA
OKSlide5
Project GoalTo 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 OutcomeState
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.Slide6
Outcomes for Today
LIFE: CHANGING THE FOCUS to quality of life for all ATTITUDE: Framework for CHANGING YOUR CULTURE Focusing on “all” people with disabilities Recognizing roles of all family membersSetting a vision for the future and impact of life trajectoryBEHAVIOR: Practical strategies for CHANGING YOUR ACTIONSSYSTEMS: Recommendations for CHANGING POLICIES and PRACTICES in your systemSlide7
Why Uncharted Waters?Journey: Recognizing life is not staticExploring: identifying new options and possibilitiesNavigating together:
Sharing responsibilityOur overall compass is “quality of life”Slide8
Charting a New Reality
ChartedTraditional or familiar Slightly ChartedTried but not norm
UnchartedNew 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 goSlide9
Focusing on ALLWhy does this matter?Slide10
Who are we talking about?
All 56.7 Million people with disabilities (19% of pop.)Slide11
Who are we talking about?
All 4.9 Million people with developmental disabilities(1.58%) Slide12
Who is usually talked about?
25%75%National % Receiving State DD ServicesSlide13
What are Tennessee Numbers?
?Enrolled State DD ServicesWaiting for State DD Services?Based on 1.58% prevalence Tennessee US Census, 2012102,633 estimated with I/DD Unaware of disability specific servicesDo not want disability specific servicesHave a diagnosis but don’t meet “eligibility criteria”Slide14
Life Outcomes for ALLWhat will this look like?Slide15
15
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. Slide16
Framing & ReframingType of Change Needed to Make this a Reality?Slide17
Type of Change that is NeededTransitional CHange“Retooling” the system and its practices to fit the new modelMergers, consolidations, reorganizations, revising systematic payment structures, creating new services, processes, systems and products to replace the traditional one
Transformation ChangeFundamental reordering of thinking, beliefs, culture, relationships, and behaviorTurns assumptions inside out and disrupts familiar rituals and structuresRejects command and control relationships in favor of co-creative partnershipsCreating Blue Space, Hanns Meissner, 2013 Slide18
Reframing Attitudes and BehaviorsFrame our thinking and actions around visions, life expectations, family and life outcomesSlide19
Think about your life…..Slide20
INDIVIDUALS live within the context of THEIR FAMILYSlide21
Lifelong Impact of Family
Biologically: Likes, dislikes, skills, abilitiesPolicy: Dreams, Aspirations,House rules, cultural rules, expectationsEnvironmentally: Neighborhood, socio-economic, educationSocially: Family and friend network, connection with community membersSlide22
Defining FAMILYFamily 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 basisThis is not dependent
on where they live.(Turnbull and Turnbull, KU Beach Center)Slide23
There are FAMILY CYCLES!!
The FAMILY is a SYSTEM!!Slide24
Reciprocal Roles of Family Members
Caring AboutAffection & Self-EsteemRepository of knowledgeLifetime commitmentCaring ForProvider of day-to-day careMaterial/FinancialFacilitator of inclusion and membershipAdvocate for support Slide25
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”Slide26
Reframing Thinking about SupportsWhat types of supports are needed and what is their role in achieving life outcomesSlide27
With the best intentions…..
27Slide28
Real Lives, Real SupportsSlide29
Types of SupportsSlide30
Supports that Support All Roles
Caring AboutLove, Affection & Self-EsteemKnowledge of History, Culture, Likes/Dislikes, MemoriesLifetime commitment, BelongingCaring ForProvider of day-to-day careMaterial/FinancialFacilitator of inclusion and membershipAdvocate for support Slide31
Supports for Creating a Vision
Vision of What I Don’t WantVision of What I Want for a Quality of Life Slide32
Supports to Help you Understand What is PossibleDAILY 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?Slide33
Supports that focus on
Life Experiences Birth-----Early Child----School----Transition---Adulthood-------Aging
“Anticipatory Guidance”Slide34
Supports that Nudge
Towards a Good Life Birth-----Early Child----School----Transition---Adulthood-------Aging
Positive TrajectorySlide35
Integrating Support Strategies: Not only focusing on specialized services Slide36
Reframing SystemsReframe “policies and practices” that support “the right to live, love, work, play and pursue life aspirations”Slide37Slide38
Focus on Life Outcomes for Allnot just Service Options for SomeSlide39
Think Across GenerationsAge
0-56-1819-6465Total TN Population406,659 (6.3%)1,084,425(16.8%)4,047,231 (62.7%)
916,597(14.2%
)
Approx. DD
(
1.59
%)
6,465
17,242
64,350
14,573Slide40
ALL: Public Health Approach
Medical SystemFlu ShotHand WashingAnti-Bacterial SoapSlide41
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 Slide42
42
Birth-----Early Child----School----Transition---Adulthood-----AgingOrganize Culture, Policy and Practices to Focus on Life Outcomes
Uncharted with Supports
ChartedSlide43
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
Create Comprehensive
, Integrated and Coordinated
Systems Across Life DomainsSlide44
44
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. Slide45
What does this look like?Looking at My Families LifeCourseSlide46
Everyone Has A Starting Point
Vision of What I Don’t WantSlide47
Vision for the FutureNot Yet Discovered
A new possibilityUnchartedRemote MonitoringAssistive TechnologyTime banksHuman-service coopsSlightly ChartedSelf-directed ServicesRespiteMicro-boardsCompanion ModelChartedStaff hired by Provider Long Term Daily SupportsSlide48
Vision for the FutureNot Yet Discovered
A new possibility UnchartedOwn homeShared Living SpaceCo-opEnvironmental AdaptationsSlightly ChartedIndependent Supported LivingChartedTraining CentersIntermediate CareGroup Homes Community Living: Housing Slide49
Vision for the FutureNot Yet Discovered
A new possibilityUnchartedMicro-enterpriseCollege/Tech SchoolsCareerMilitarySlightly ChartedSupported EmploymentVolunteerismAmeriCorps/VISTAChartedSheltered WorkshopsDay Habilitation Daily Life: EmploymentSlide50
Eric’s
“Good Life”Slide51
Our Families “Good Life”Slide52
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 atsupportstofamilies.orgVisit our website atsupportstofamilies.orgLike us on Facebook atfacebook.com/supportstofamiliesFollow us on Twitter attwitter.com/familieswithiddSlide53
Contact InformationSheli Reynolds816.235.1759reynoldsmc@umkc.edu