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
History of the field and its impact on our “thinking” “policies” “culture” and “practices” of families, professionals, direct care, etc.
Who are we talking about
Role of the family in the history of the system
Lifecourse theory, self-determination and supports to family
Person
Family role (in lives and in services)
Integrated seamless services systems
Along the life course
Changes:
Culture
Policy
Professional development
practices

5. Traditional or familiar
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
Removes value judgments and blame
Not a continuum, but current or historical options

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
Community
Family
Person

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

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

11. 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 Institute on Community Integration, Minneapolis, MN.

12. 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 Institute on Community Integration, Minneapolis, MN.

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

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

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

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

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

18. Developmental Disability Assistance and Bill of Rights Act, 2000
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.
Systems…………….childhood=pediatricians……………………aging
Trajectory towards a life in the community

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

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

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

22. 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 self-advocacy and family support
Enhances opportunities for self-advocacy and self-determination
Crisis, immediate response
Preventative, long-term planning
Supporting caregiver in order to decrease demand on long-term services
Creates a quality of life for person with DD and their family by supporting their many roles
Defined by professionals or service system
As a program or specific services
Tension between self-determination/self-advocacy and family support
Goal of supporting caregiver in order to decrease demand on long-term services

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)
Longitudinal research indicates that three types of life events can serve as turning points
(Rutter, 1996):
1. Life events that either close or open opportunities
2. Life events that make a lasting change on the person’s environment
3. Life events that change a person’s self-concept, beliefs, or expectations

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?
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
Not a program or based on eligibility, it is needs defined by the families
Family is defined functionally; inclusive of siblings, parents with disabilities, grandparents
Enhances opportunities for self-advocacy and self-determination
Preventative, long-term planning
Creates a quality of life for person with DD and their family

26. 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

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

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

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

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

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

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

33. Persons with Disabilities and Their Families
Supporting Uncharted Lives
Persons with Disabilities and Their Families

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

35. 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

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

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

38. SERVICES AND SUPPORTS COMMUNITY ASSETS: COMMUNITY RESOURCES BUSINESSES
RELIGIOUS BASED

39. 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

40. Uncharted with Supports
FORMAL SERVICE MAZE:
LIFE STAGES
Birth----Early Child----School------Transition----Adulthood----Aging
Community
Family
Person with Disability
Disability Services
Uncharted with Supports
Charted
Systems…………….childhood=pediatricians……………………aging

41. 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
Systems…………….childhood=pediatricians……………………aging
Trajectory towards a life in the community

42. 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

43. 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

44. 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?

45. 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

46. 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?

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

48. 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

49. 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
AmeriCorps/VISTA
Charted
Sheltered Workshops
Day Habilitation

50. Vision for a Meaningful Day
Community
Family
Disability Services
Person with Disability
Community
Family
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

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

52. 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
Change the sun to “health”

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

54. 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

55. Vision for a Quality of Life
Community
Family
Disability Services
Person with Disability
Community
Family
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

56. Our Uncharted Life

57. NAVIGATING ERIC’S LIFE
Division of Developmental Disabilities (DDD) Regional Office
Administer funds for the Medicaid Home and Community Based Service Waiver (HCBS)
Residential Supports
Day Habilitation Services
SB40 Support Coordination
Yearly Planning
Monitoring of Plan, Service and Funds
Provider:
Companion Model for Residential Support Needs
Individualized Day Habilitation Program for Daily Supports
Specific Staff
Nurse
House Manager (QDDP)
Companion Staff
Weekend Staff
Daily Staff

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

59. Fostering Community Finding Solutions Together
Charting a New Life Course
Fostering Community Finding Solutions Together

60. Uncharted with Supports
Policy, Practices and Culture of Disability
Community
Family
Person with Disability
Uncharted with Supports
Community
Family
Disability Services
Person with Disability
Systems…………….childhood=pediatricians……………………aging
Charted
Birth-----Early Child----School----Transition---Adulthood-----Aging

61. Comprehensive, Integrated, and Coordinated Vision for All
Pediatrician, Families and Friends, Faithbased
IDEA Part C, Parents as Teachers, Health, Headstart
Community
Family
Person with Disability
School, Special Education, Health, Recreation
Vocational Rehab, Health Employment, College, Military
Systems…………….childhood=pediatricians……………………aging
Trajectory towards a life in the community
Disability Services, Health, Housing, College, Careers
Retirement, Aging System, Health

62. Inclusive Communities
A world where everyone is:
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.

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

64. Vision of the next Generation……

65. 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:
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: MacMillan.
Developmental Disabilities Assistance and Bill of Rights Act of Public Law U.S. Code §
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(4th ed, pp. 1-38). Thousand Oaks, CA: SAGE.
Kuh, D., BenShlomo, Y., Lynch, J., Hallqvist, J., & Power, C. (2003). Life course epidemiology. Journal of Epidemiology and Community Health, 57(10):

66. 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 Institute on Community Integration, Minneapolis, MN. National Gateway to Self-Determination (2011). Research to practice in self-determination 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, 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.

67. Contact Information
Sheli Reynolds