Aging Across the Life Course Michelle Sheli Reynolds

Aging Across the Life. Course Michelle “Sheli’ Reynolds, SIB, Ph. D May 18, 2015

About Sheli Reynolds • Sibling of three brothers, one who is 33 year old with developmental disability • Member, Presidents Committee for Persons with Intellectual Disabilities Appointed by President Obama • Director of Individual Advocacy and Family Support, UMKC UCEDD o Supported the Self-Advocacy Movement for 12 years o Director of Mo Family-to. Family Health Info Center o Co-Director of National Co. P on Supports to Families

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. CT D C MO OK TN WA

Outcomes for Today • Learn about the Life. Course framework and how it is being used to guide practices that support aging across the lifespan • Identify Integrated Supports strategies for enhancing the trajectory towards a good life • Explore how long term service and support policies and practices support people with intellectual disabilities who are aging

What is YOUR Vision for a Good LIFE? Vision of What I Want for a Quality of Life

What You Don’t Want? ? Vision of What I Don’t Want

“A Good Life for All” Why is this important Now?

All people have the right to live, love, work, play and pursue their dreams in their community.

Services and Supports are Evolving

What we know about current realities? Community Demand for Services Family Expectations, Values, Culture Social and Medical Services Policies and Budget Person with Disability Lan gu and age Wo rds Evidence Based Practices

Joining Forces for a New Vision 1950 s Mom------Parent-----Family Movement 1970 s Self-Advocacy and Independent Living Movements (Not about me, without me) 2000 s Siblings Movement 1960 s Medicaid and Medicare Established 1980 s Medicaid Waiver (Community Supports) 2010 s Affordable Care Act 1970 s Rehab Act: 504 Plans 1975 s Education for All Children 1990 s IDEA and ADA 2000’s Community and Society Communi ty Family Person with Disability

Treating the Whole Child and Their Family GUIDING PRINCIPLES AND LIFECOURSE FRAMEWORK

Life Course Health Development Model Integrated continuum with a complex interplay of: biological, behavioral, psychological, social, and environmental factors contributing to health outcomes. Each life stage influences the next. social, economic, and physical environments have a profound impact on individual and community health. HRSA MCH Life Course Resource Guide

100% Focus on “ALL” ALL individuals and their families are considered in our values and vision. (Family is defined by the Individual)

“Good Life for All ” The Individual will achieve self-determination, interdependence, productivity, integration, and inclusion in all facets of community life Families will be supported in ways that maximize their capacity, strengths, and unique abilities to best nurture, love, and support all individual members to achieve their goals

Focus on “ALL” 100% All 4. 9 Million people with developmental disabilities 75% 25% National % Receiving State DD Services ** Based on national definition of developmental disability with a prevalence rate of 1. 49%

Missourians with I/DD 95, 498 estimated Missourians with Developmental Disabilities 65% (62, 498) 19% 13% 3% ICF/DD Enrolled HCBS DD Services State DD Services Targeted Case Management Based on 1. 58% prevalence of 3. 815 million citizens, US

Aging Across Life Stages and Generations Age 0 -5 6 -18 19 -64 65 MO Total Population 374, 784 (6. 2%) 1, 396, 375 (23. 1%) 3, 367, 018 (55. 7%) 906, 737 (15%) DD MO (1. 58%) 5, 921 22, 062 53, 198 14, 326 Based on 1. 58% prevalence US Census 2013

Where Adults with I/DD Live 89% of People I/DD are Supported Outside of Formal Residential Supports Larson, S. A. , Lakin, K. C. , Anderson, L. , Kwak, N. , Lee, J. H. , & Anderson, D. (2000).

Focusing on Person & Their Family All individuals live within the context of a family (Regardless of where a person lives)

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, socioeconomic, education Socially: Family and friend network, connection with community members Policy: Dreams, Aspirations, House rules, cultural rules, expectations

Recognition of Individual and Family Cycles Individual Life Cycle Family Life Cycle

Reciprocal Roles of ALL Family Members Affection & Self-Esteem Caring About Repository of knowledge Lifetime commitment Provider of day-to-day care Material/Financial Caring For Facilitator of inclusion and membership Advocate for support *Adapted from Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

Supports for Making Your Vision a Reality Information—Peer Support—Goods & Services

Vision for a Good Life The future is not something we enter. The future is something that we create. And creating that future requires us to make choices and decisions that begin with a dream. -Leonard L. Sweet

Trajectory towards Good Life s e m o ry o t c rds a tow tc u O Friends, family, selfdetermination, community living, social capital and economic sufficiency e j a r T Vision of What I Don’t Want towa y r o t c e j Tra unwa s g n i h t rds nted

Focusing on Life Experiences Across the Lifespan “Volunteering at church” “Making mistakes” Learning to say “no” “Retirement” “Reminiscing” “Aging In Place” “Playing sports or an instrument” “Chores and allowance” Birth-----Early Child----School----Transition---Adulthood-------Aging “Anticipatory Guidance for Life

Three Types of Supports Discovery & Navigation (Info and Training) Connecting & Networking (Talking to Someone that has been there) Goods & Services (Day to Day, Medical, Financial Supports)

Thinking Across all Life Domains Daily Life and Employment Healthy Living (education/employment, life skills) (medical, behavioral and mental health, wellness, nutrition) Community Living Safety and Security (housing, transportation, community access) Social and Spirituality (friends, relationships and leisure activities) (emergencies, legal, wellbeing, guardianship and alternatives Citizenship and Advocacy (leadership, peer support, making choices, setting goals)

Understanding Possibilities: Aging Together as a Family…

Community Living Possibilities Vision for the Future Innovative • Not Yet Discovered Islands of Excellence • • • Own home Shared Living Space Co-op Environmental Adaptations Independent Supported Living Traditional Options • Training Centers • Intermediate Care • Group Homes

Service & Support Possibilities Vision for the Future Innovative • A new possibility Islands of Excellence • • Remote Monitoring Assistive Technology Time banks Human-service coops Self-directed Services Respite Micro-boards Companion Model Charted • Staff hired by Provider

Daily Life/ Employment Possibilities Vision for the Future Innovative • New possibilities, needs discovery Islands of Excellence • • Micro-enterprise College/Tech Schools Career Military Supported Employment Volunteerism Ameri. Corps/VISTA Retimrement Charted • Sheltered Workshops • Day Habilitation

Eric’s Focus on Social and Spiritual Happy, Funny and loving Likes to help people Likes to try new things Police cars, tow trucks, fire engines and racecars Golf Cart See his girlfriend more Connect with his family Spend more time with friends Companion Supports day-to-day Scouts Red Robin Race Tracks I-pad Smart Phone

There are sometimes roadblocks and stops along the way…. .

abilities, i-pad family, strengths, remote characteristics. For a good lifefriends, monitoring, neighbors, cognitive coaccessibility, workers, adaptive church equipment members school, businesses, church/faith based, public transportation, parks and recreation SHS services, Medicaid, section 8, Food Stamps, Vocational Rehab Integrating Supports Across the Life Span Adapting, Accommodating, Integrating and Accessing

Partnering with Person with Disability and their Families so they can Engage, Lead, and Drive Their Own Lives and Policy and Systems Change

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

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

Constructing Universal Strategies for Supporting Across the Life. Course LTSS Supports -Family and Self-Advocacy Networks -Inclusive education with supports -Adaptive equipment -Problem Solving and Life Navigation -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

Next Steps: Connecting and Leveraging Partners and Innovations 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

Aging and Disability Federal Initiatives • Employment First • Alternatives to Guardianship/Supported Decision Making • No Wrong Door to LTSS Initiatives • Aging and Disability Resource Center • CMS Balanced Incentive Program • CMS Community Settings and Person Centered Rule • Life. Span Respite Care Act • Older Americans Act

Supporting “A Good Life” Across the Life. Course

Life isn’t about how to survive the storm, but how to dance in the rain. -unknown

Contact Information Sheli Reynolds reynoldsmc@umkc. edu