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Charting Life ’ s Transitions: Understanding Your Role in Your Child ’ s Life

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

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Charting Life ’ s Transitions: Understanding Your Role in Your Child ’ s Life

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

  2. About Me • Sibling of 30 year old brother with developmental disability • Director Individual Advocacy & Family Support UMKC Institute for Human Development • 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”

  3. My Family

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

  5. Charting a New Reality

  6. 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”

  7. Where we have been……….. Where We are Going

  8. Uncharted Lives…..Real Lives, Real People

  9. Uncharted Life Course Healthy & Happy Friends & Family Financial Stability

  10. What we Know: Charted Disability Services

  11. Who are we Talking About? *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.

  12. A look at the numbers…. *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.

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

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

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

  16. Individual Life Trajectory Uncharted with Supports Charted

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

  18. Future for Disability Services: Uncharted Lives • 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.

  19. Family Roles Across LifeCourse Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

  20. History of the Role of Family

  21. History of the Role of Family

  22. New Supports for Families

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

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

  25. What does my family need?

  26. New Charter for Supports

  27. Supporting Uncharted Lives Persons with Disabilities and Their Families

  28. LifeCourse Perspective Uncharted with Supports • Trajectory • Transition • Life Events • Life Events Charted Birth-----Early Child----School----Transition---Adulthood-------Aging

  29. Life Course: Basic Concepts • 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

  30. SERVICES AND SUPPORTS • FORMAL • GOVERNEMENT • DISABILITY SPECIFIC NON-GOVERNMENTAL ORGANIZATIONS

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

  32. SERVICES AND SUPPORTS • COMMUNITY ASSETS: • COMMUNITY RESOURCES • BUSINESSES • RELIGIOUS BASED

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

  34. FORMAL SERVICE MAZE: LIFE STAGES Uncharted with Supports Charted Birth----Early Child----School------Transition----Adulthood----Aging

  35. 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

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

  37. Where will My Child Live?

  38. 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?

  39. Who will Support My Child?

  40. 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?

  41. Vision for Community Living • New realities now that living environment disconnected from supports • New roles and responsibilities for self-advocates and families • New Possibilities

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

  43. What will my Child Do for a Living?

  44. Vision for a Meaningful Day • New generation growing up alongside peers • Post-secondary education and Careers • Economic Self-Sufficiency • Increased access to social and recreation • Valued role in community

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