Charting Life s Transitions Understanding Your Role in Your

Charting Life’s Transitions: Understanding Your Role in Your Child’s Life Michelle “Sheli” Reynolds, SIBLING, Ph. D Missouri Family-to-Family Resource Center University of Missouri- Kansas City Institute for Human Development University Center on Developmental Disabilities April 9, 2013

About Me p p Sibling of 30 year old brother with developmental disability Director Individual Advocacy & Family Support UMKC Institute for Human Development n n n 12 years supporting self-advocacy movement (People First of MO and SABE) Director of Mo Family-to-Family Disability & Health Information Center Technical assistance to continue moving policy and practices to support the “national agenda for supporting families with disabilities”

My Family

Goals of Presentation Challenge everyone to think beyond their current beliefs and understanding p Show the impact of history on supports and services now p Provide an overview of the role of the family throughout the lifespan p Describe a new agenda for supports to individuals and their families across the life course p

Charting a New Reality Charted Traditional or familiar Slightly Charted Tried but 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

Why Uncharted Waters? Journey: Recognizing life is not static p Exploring: identifying new options and possibilities p Navigating together: Sharing responsibility p Our overall compass is “quality of life” p

Where we have been………. . WHERE WE ARE GOING

Uncharted Lives…. . Real Lives, Real People Community Family Person 8

Uncharted Life Course Healthy & Happy Friends & Family Financial Stability

What we Know: Charted Disability Services Community Family Disability Services Person with Disability 10

Who are we Talking About? Person with DD Est. Number of Persons with DD 4. 7 Million Receiving State DD Services 1. 2 Million (25%) Not receiving State DD Services 3. 5 Million (75%) *Lakin, C. , Larson, S. , Salmi, P. & Webster, A. (2010). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009. Institute on Community Integration, Minneapolis, MN.

A look at the numbers…. 25% receiving Formal Services 1. 2 Million Live in Natural Homes 528, 000 56% Live in Residential Placements 672, 000 44% *Lakin, C. , Larson, S. , Salmi, P. & Webster, A. (2010). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2009. Institute on Community Integration, Minneapolis, MN.

Unknown Vision for the Future Healthy & Safe ? ? ? ? ?

Vision for a Future Healthy & Happy Friends & Family Services Supports Financing Meaningful Activity

For Families with Members with Disabilities: FOSTER OPPORTUNITIES TO CREATE A VISION FOR THE FUTURE

Individual Life Trajectory Uncharted with Supports Community Family Person with Disability Charted Community Family Disability Services Person with Disability 16

Vision for an Uncharted Life Healthy & Happy Friends & Family Discovery Connections Day-to-Day Meaningful Activity

Future for Disability Services: Uncharted Lives Community Family Person with Disability Developmental Disability Assistance and Bill of Rights Act, 2000 • Enjoy the opportunity to live independently, • Enjoy self-determination, • Make choices, • Contribute to society • Experience full integration and inclusion in the economic, political, social, cultural, and educational, mainstream of American Society.

Family Roles Across Life. Course Affection & Self-Esteem Caring About Repository of knowledge Lifetime commitment Provider of day-to-day care Material/Financial Caring For Facilitator of inclusion, recreation, spirituality & meaningful activities Advocate for support Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

History of the Role of Family Era Understanding of Family Disability Services 1800 s- Moral blame assigned to parents Removal from Society 1900 s Child damaged families Removal from Family 1950 s Burden of Caregiving Specialized Therapeutic Congregate Services 1980 s Families seen as system Positive Coping Community Group Residential Supports 1990 s Families support children to remain in their home for as long as possible Family Support programs for children living at home

History of the Role of Family Era 2010 s Understanding of Family Disability Services Families adapt, -Family is a main constant in the accommodate and are lives of persons with disability resilient -Families play significant role Recognize that there across the lifespan regardless of are additional service provision emotional, physical and financial realities -Families may need supports for the different roles they play in the lives of their family member

New Supports for Families Charted New Charter Defined by eligibility, services or programs available, or funding Not a program or based on eligibility, it is needs defined by the families across the lifespan regardless of service provision Caregiver or parent Family is defined functionally; inclusive of siblings, parents with disabilities, grandparents Tension between selfadvocacy and family support Enhances opportunities for selfadvocacy and self-determination Crisis, immediate response Preventative, long-term planning Supporting caregiver in order Creates a quality of life for person to decrease demand on long- with DD and their family by term services supporting their many roles

Life Events Serve as Turning Points Life events that either close or open opportunities p Life events that make a lasting change on the person’s environment p Life events that change a person’s self-concept, beliefs, or expectations p Based on longitudinal research (Rutter, 1996)

Supporting Individuals with I/DD and Their Families *Families: will be supported in ways that maximizes their capacity, strengths and unique abilities so they can best support, nurture, love and facilitate…… Individual with Disability: achievement of selfdetermination, interdependence, productivity, integration and inclusion in all facets of community life Birth--Early Child--School--Transition-------Adulthood---------Aging 24 *National Definition for “Supporting Families” (2011 Wingspread)

What does my family need? Vision for the Future Not Yet Discovered • ? ? ? Uncharted • Flexible, comprehensive and coordinated strategies: -Discovery and Navigation -Connecting and Networking -Day-to-Day Services & Goods Slightly Charted • Family Support Programs • Specialized Services Charted • Removal from the Family

New Charter for Supports DISCOVERY AND NAVIGATION Information and Training Supports PEER SUPPORT NETWORKS Emotional Supports DAY-TO-DAY NEEDS Supports for Role of Daily Care/Support

Supporting Individuals and Families Across the Lifecourse Information and Training Supports: Knowledge and Skills • Information on disability • Knowledge about best practices and values • Skills to navigate and access services • Ability to advocate for services and policy change Emotional Supports: Mental Health and Self-efficacy Instrumental Supports: Day-to-Day Needs

Moving Beyond the “What” to “Why and How” What Information on disability Specific diagnosis and interventions, therapies, and services Knowledge about best practices, values, and philosophy • • Housing Education Employment Sexuality Health care Early childhood Recreation Why Personal stories of hope, possibilities, and opportunities for now and the future • • Inclusion and integration Productivity and meaningful life Self-Determination Social Capital Natural Supports Family/person-centered thinking Self-Directing Services

Strategies for Educating Charted How it is provided • • • In-person Workshops Directories Booklets Websites Support Groups Uncharted • • • Webinars Community Conversations Blogs, chat rooms Videos, pictures, personal testimonies Social Media Text messages

Navigation: Skills Chartered Knowledge on how to navigate and access services Available services and eligibility criteria Skills to plan for current needs while focusing on a vision for the future Person-centered/familycentered planning Ability to advocate for services and policy change Understand rights and responsibilities Unchartered Understanding and ability to navigate and access different supports within and outside of disability services Building social capital and relationships, developing economic self-sufficiency, Individual Education Plans long term planning Enhance skills to make a change for self, family and for services and systems

Supporting Individuals and Families Across the Lifecourse Emotional Supports: Mental Health and Self-efficacy Information and Training Supports: Knowledge and Skills • • Parent-to-Parent Support Self-Advocacy Organizations Family Organizations Sib-shops Support Groups Professional Counseling Non-disability community support Instrumental Supports: Day-to-Day Needs

Supporting Individuals and Families Across the Life. Course Instrumental Supports: Day-to-Day Needs Information and Training Supports: Knowledge and Skills Emotional Supports: Mental Health and Self-efficacy • • • Self/Family-Directed services Transportation Respite/Childcare Adaptive equipment Home modifications Financial assistance Cash Subsidies Short/Long term planning Caregiver Supports and training

Supporting Uncharted Lives PERSONS WITH DISABILITIES AND THEIR FAMILIES

Life. Course Perspective Uncharted with Supports Community • • Trajectory Transition Life Events Family Person with Disability Charted Community Family Disability Services Person with Disability Birth-----Early Child----School----Transition---Adulthood-------Aging 34

Life Course: Basic Concepts p p Trajectory: Long-term pattern of stability and change, which usually involves multiple transitions. Transition: Change in roles and statuses that represents a distinct departure from prior roles and statuses. Life event: significant occurrence involving a relatively abrupt change that may produce serious and long-lasting effects Turning Point: Life event that produces a lasting shift in the life course trajectory

SERVICES AND SUPPORTS p FORMAL n n GOVERNEMENT DISABILITY SPECIFIC NON-GOVERNMENTAL ORGANIZATIONS

SERVICES AND SUPPORTS p PEER TO PEER EXCHANGE n n PEOPLE HELPING PEOPLE FORMAL: ORGANIZED PROGRAMS FAMILY ORGANIZATIONS p CO-OP p n INFORMAL: NEIGHBORS p EXTENDED FAMILY p FRIENDS p

SERVICES AND SUPPORTS p COMMUNITY ASSETS: n n n COMMUNITY RESOURCES BUSINESSES RELIGIOUS BASED

Formal Services and Supports p Who funds formal services? n Individual p p n Out of pocket Private Health Insurance Local Government p p School Districts Tax Levees § Mental Health § Child Specific § Developmental Disabilities n State Government p n General Revenue Federal Government p p Medicaid and Medicare Title X: Maternal and Child Health Program IDEA: Special Education Social Security

FORMAL SERVICE MAZE: LIFE STAGES Community Family Person with Disability Uncharted with Supports Community Family Disability Services Person with Disability Charted Birth----Early Child----School------Transition----Adulthood----Aging

FORMAL SERVICE MAZE: CATEGORIES Pediatrician, Child Care, Parents Day Out, Head Start, IDEA Part C, Parents as Teachers, Pediatrician School, Special Education, Doctor, Afterschool Care, Summer Care, Recreation Vocational Rehab, Health, Employment, College, Military Disability Services, Health, Housing, College, Careers Retirement, Aging System, Health

Other Things to Keep in Mind Organized by “service areas” (districts, county, region) p Eligibility p n n System specific or program specific Specifically: Diagnosis or functional limitation specific p Formal assessment p Financial p

Where will My Child Live? Vision for the Future Not Yet Discovered • ? ? ? Uncharted • • Own home Shared Living Space Co-op Environmental Adaptations Slightly Charted • Independent Supported Living Charted • Training Centers • Intermediate Care • Group Homes

ERIC’S HOUSE • WILL ERIC RENT OR OWN? • DOES HE WANT TO LIVE IN AN APARTMENT, TOWNHOME OR HOUSE? • SHOULD HE HAVE ROOMMATES? • HOW MUCH COULD HE AFFORD FOR HOUSING COSTS? • COULD HE RECEIVE FINANCIAL ASSISTANCE FROM HUD OR LOANS? • COULD OUR FAMILY AFFORD TO SUPPORT ANY HOUSING COSTS?

Who will Support My Child? Vision for the Future Not Yet Discovered • ? ? ? Uncharted • • Remote Monitoring Assistive Technology Time banks Human-service coops Slightly Charted • Self-directed Services • Respite • Micro-boards Charted • Staff hired by Provider

ERIC’S SUPPORTS • WHAT WAS THE INTENSITY OF SUPPORTS ERIC NEEDED? • WHAT TYPE OF STAFF MADE SENSE FOR ERIC’S NEEDS? • WHAT LEVEL OF DAILY SUPPORT COULD OUR FAMILY PROVIDE? • WHAT LEVEL OF CONTROL DID WE WANT OVER WHO HIS STAFF WERE?

Vision for Community Living Community Family Disability Services Person with Disability - New realities now that living environment disconnected from supports - New roles and responsibilities for selfadvocates and families - New Possibilities

Making Community Living a Reality HOUSING p INFORMAL: SHARED SPACE p ASSISTANCE WITH HOUSING SUPPORTS p INFORMAL: p p FORMAL EARNED INCOME AND/OR SOCIAL SECURITY p LOANS AND BANKS p HOUSING AND URBAN DEVELOPMENT p FAMILY AND FRIENDS p ROOMMATES p p FORMAL SUPPORTS COORDINATORS p PROVIDERS p DIRECT SUPPORT PROFESSIONALS p

What will my Child Do for a Living? Vision for the Future Not Yet Discovered • ? ? ? Uncharted • • Micro-enterprise College/Tech Schools Career Military Slightly Charted • Supported Employment • Volunteerism • Ameri. Corps/VISTA Charted • Sheltered Workshops • Day Habilitation

Vision for a Meaningful Day Community Family Disability Services Person with Disability - Person with Disability New generation growing up alongside peers Post-secondary education and Careers Economic Self-Sufficiency Increased access to social and recreation Valued role in community

Making MEANINGFUL DAY Reality p INFORMAL: n n p FAMILY AND FRIENDS PERSONAL CONNECTIONS FORMAL n n SCHOOL DISTRICT GENERIC/COMMUNITY EMPLOYMENT RESOURCES VOCATIONAL REHABILITATION DDD EMPLOYMENT AND YOUTH SPECIALIST

What about my child’s Health Care? Vision for the Future Not Yet Discovered • ? ? ? Uncharted • • Healthy Life Styles Preventative Universal Access Comprehensive Community based Slightly Charted • Medical Home • Patient Professional Partnerships • Provider based Charted • Medical Professionals Know Best • Hospital Based

Making Healthy Lifestyles a Reality p INFORMAL: n n n p Patient Professional Partnerships Education on healthy choices and lifestyles Connections with Others (Spiritual/Recreational/Social) FORMAL n Funding p p p n Out of Pocket Private Insurance Public Insurance (Medicaid/EPSDT, Medicare) Services p Behavioral Health § Counselors and Therapists § Psychiatrist/Psychologist p Health Medical Professionals § Doctors (Routine Care and Specialists) § OT/PT/Speech

What about our 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

Vision for a Quality of Life Community Family Disability Services Person with Disability -Building own family and relationships -Community connections provide quality assurance -Fostering self-advocacy and self-determination skills leads to safety and protection -Focusing on meaning of life beyond interventions and concrete day-to-day supports

Our Uncharted Life

NAVIGATING ERIC’S LIFE p Division of Developmental Disabilities (DDD) Regional Office n Administer funds for the Medicaid Home and Community Based Service Waiver (HCBS) p p p SB 40 Support Coordination n n p Yearly Planning Monitoring of Plan, Service and Funds Provider: n n p Residential Supports Day Habilitation Services Companion Model for Residential Support Needs Individualized Day Habilitation Program for Daily Supports Specific Staff n n n Nurse House Manager (QDDP) Companion Staff Weekend Staff Daily Staff

NAVIGATING ERIC’S LIFE p p Community Supports n Medical n Educational n Recreational n Spiritual n Social Parents and Family n Create a vision for his life n Ensure access and quality to services n Advocate for services (DDD, Doctor, Psychiatrist, Hospital, Provider) n Maintain standards of quality of life (housing, clothes, extras) n Continue to connect and build relationships

Charting a New Life Course FOSTERING COMMUNITY FINDING SOLUTIONS TOGETHER

Policy, Practices and Culture of Disability Community Family Person with Disability Uncharted with Supports Community Family Disability Services Person with Disability Charted Birth-----Early Child----School----Transition---Adulthood-----Aging 60

Comprehensive, Integrated, and Coordinated Vision for All Pediatrician, Families and Friends, Faithbased IDEA Part C, Parents as Teachers, Health, Headstart Community School, Special Education, Health, Recreation Vocational Rehab, Health Employment, College, Military Disability Services, Health, Housing, College, Careers Retirement, Aging System, Health Family Person with Disability

Inclusive Communities p A world where everyone is: n n Welcome, accepted, and included Valued and treated with respect, fairness and equality Included in their communities (universally designed for physical, cognitive and social accessibility) Given opportunities to dream, achieve success and change the world.

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

Vision of the next Generation……

References Ben-Shlomo, Y. , & Kuh, D. (2002). A life course approach to chronic disease epidemiology: conceptual models, empirical challenges and interdisciplinary perspectives. International Journal of Epidemiology, 31: 285 -293. Bigby, C. , & Fyffe. C. (2012). Services and Families Working Together to Support Adults with Intellectual Disability. Proceedings of the Sixth Roundtable on Intellectual Disability Policy. Bundoora: La Trobe University. Calkins, C. , Wehmeyer, M. , Bacon, A. , Heller, T. , & Walker, H. M. (2011) Introduction to the special issue on scaling up efforts to promote the self-determination of people with developmental disabilities. Exceptionality, 19(1): 2 -5. Dalley, G. (1988). Ideologies of caring: Rethinking community and collectivism. Basingstoke: Mac. Millan. Developmental Disabilities Assistance and Bill of Rights Act of 2000. Public Law 106 -402 U. S. Code 42 2000 § 15001. Family Support Agenda (2012). Building a national agenda for supporting famiies wit a member with intellectual and developmental disabilities. Fine, A. , Kotelchuck, M. , Adess, N. , & Pies, C. (2009). Policy brief. A new agenda for MCH policy and programs: Integrating a life course perspective. Martinez, CA: Family, Maternal, and Child Health Programs Contra Costa Health Services. Hutchison, E. D. (2007). A Life course perspective. In Hutchison, E. D. , Dimensions of human behavior: The changing life course(4 th ed, pp. 1 -38). Thousand Oaks, CA: SAGE. Kuh, D. , Ben. Shlomo, Y. , Lynch, J. , Hallqvist, J. , & Power, C. (2003). Life course epidemiology. Journal of Epidemiology and Community Health, 57(10): 778 -783.

References (continued) Missouri Family to Family (2012). Charting the life course: A guide for individuals, families, and professionals. Kansas City, MO: Institute for Human Development, University of Missouri-Kansas City. Lakin, C. , Larson, S. , Salmi, P. , & Webster, A. (2010). Residential services for persons with developmental disabilities: Status and trends through 2009. Institute on Community Integration, Minneapolis, MN. National Gateway to Self-Determination (2011). Research to practice in selfdetermination series. National Training Initiative on Self-Determination and the Association of University Centers on Disabilities. Hareven, T. (2000). Families, history, and social change: Life course and cross-cultural perspectives. Boulder, CO: Westview Press. Riley, M. W. , & Riley Jr, J. W. (1996). Generational relations: A future perspective. Aging and Generational Relations: Life-course and Cross-cultural perspectives, 283 -291. Seltzer, M. M. (1985). Informal supports for aging mentally retarded persons. American journal of mental deficiency, 90(3), 259. Turnbull, A. , Turnbull, R. , Erwin, E. , Soodak, L. , & Shogen, K. (2011). Families, professionals, and exceptionality: Positive outcomes through partnership and trust. Boston MA: Pearson.

Contact Information Sheli Reynolds reynoldsmc@umkc. edu 816. 235. 1759