1. Supporting Families NACDD 2016 ANNUAL CONFERENCE
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Update Mo # slides
Supporting Families NACDD 2016 ANNUAL CONFERENCE
Washington, D.C.
July 8, 2016

2. About Sheli
Sibling of three brothers, one who is 32 year old with developmental disability
Member of Presidents Committee for People with Intellectual Disabilities
Director of Individual Advocacy and Family Support, UMKC UCEDD
Supported the Self-Advocacy Movement for 12 years
Director of Mo Family-to- Family Health Info Center
Co-Director of National CoP on Supports to Families
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

3. Setting the Stage: Current Reality

4. Current Reality of Services & Supports
Demand for Services
Expectations, Values, Culture
Federal Budget
Federal Policy
Key Federal Policy:
Developmental Disability Act
Individuals with Disabilities Education Act
Family and Medical Leave Act
Lifespan Respite Act
Older American’s Act
HCBS rules
Key Federal Initiatives
Medicaid Money Follows the Person
SSA Ticket to Work
Aging and Disability Resource Centers
HHS Community Living Initiative
Other Key Initiatives:
National Governors Association initiative “A Better Bottom Line: Employing People with Disabilities”
Capacity of
Work Force
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

5. 100% 1 in 4 Persons with I/DD Receive Formal State DD Services 25% 75%
4.7 Million people with developmental disabilities
National % Receiving State DD Services
3 out of 4 are not getting and may never get paid DD services. Our job is to help the 3 get other kinds of support, and help ALL 4 figure out different ways of getting supports.
** Based on national definition of developmental disability with a prevalence rate of 1.58%
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

6. Where do People with I/DD Live?
89% living in own homes and/or are supported by family
Anderson, L.L., Larson, S.A., Kardell, Y., Hallas-Muchow, L., Aiken, F., Hewitt, A., Agosta, J., Fay, M.L., &
Sowers, M. (2015). Supporting Individuals with Intellectual or Developmental Disabilities and their Families:
Status and Trends through Minneapolis: University of Minnesota, Research and Training Center on
Community Living, Institute on Community Integration.
Anderson, L.L., Larson, S.A., Kardell, Y., Hallas-Muchow, L., Aiken, F., Hewitt, A., Agosta, J., Fay, M.L., & Sowers, M. (2015). Supporting Individuals with Intellectual or Developmental Disabilities and their Families: Status and Trends through Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

7. Defining Supports to Families
DISCOVERY AND NAVIGATION
Knowledge & Skills
CONNECTING AND NETWORKING
Mental Health & Self-Efficacy
GOODS AND SERVICES
Day-to-Day & Caregiving/Supports
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

8. Moving to Supporting Families
Family Support
Supporting Families
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
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

9. Key Recommendations
Focus on systems change within Medicaid and developmental disability services
Develop a national Community of Practice to further define supports to families
Expand or create national longitudinal data sets to include supports to families
Create a national research focus on supports to families
Elevate the presences of ADD within federal structure
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

10. 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 intellectual and developmental disability across the lifespan. CT DC MO OK TN WA
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

11. Funded in 2012 by National Partners
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

12. Project Outcome 1: Develop State and national consensus on a national framework and agenda for improving support for families with members with I/DD.
First show the person,
Then show the family,
then bring up the domains
And then the buckets
And then the outer layers
All these things work together to make a good life.
Supporting Families LifeCourse Framework
Adapted from “Life Course Theory”
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

13. Type of Change that is Needed
Transitional CHange
Transformation Change
“Retooling” the system and its practices to fit the new model Mergers, consolidations, reorganizations, revising systematic payment structures, creating new services, processes, systems and products to replace the traditional one
Fundamental reordering of thinking, beliefs, culture, relationships, and behavior
Turns assumptions inside out and disrupts familiar rituals and structures
Rejects command and control relationships in favor of co- creative partnerships
Transitional change – can’t just keep changing names and adding things on – have to think very differently.
The LifeCourse Framework is the way we can achieve Transformational Change
Have/change conversations; problem solve; navigate; educate; plan
Tools to give confidence, to start conversations, actually USE the tools
Creating Blue Space, Hanns Meissner, 2013
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

14. Services and Supports are Evolving
Everyone exists within the context of family and community
Integrated Services and Supports within context of person, family and community
Traditional
Disability Services
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

15. Guiding Principles of the Supporting Families LifeCourse Framework

16. Core Belief:
All people and their families have the right to live, love, work, play and pursue their life aspirations in their community.

17. Overall Goal “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
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

18. Partnering with People with Disabilities and their Families so they can Engage, Lead, and Drive Policy and Systems Change
Key National CoP Principle
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

19. Focus on ALL

20. 100% 1 in 4 Persons with I/DD Receive Formal State DD Services 25% 75%
4.7 Million people with developmental disabilities
75%
National % Receiving State DD Services
25%
3 out of 4 are not getting and may never get paid DD services. Our job is to help the 3 get other kinds of support, and help ALL 4 figure out different ways of getting supports.
** Based on national definition of developmental disability with a prevalence rate of 1.58%
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

21. Missourians with DD 65% (62,087) 18% 17%
96,122 estimated Missourians with Developmental Disabilities*
65%
(62,087)
Targeted
Case
Management
17%
18%
Not Known to
DD State System
Paid DD
Services
As Reported by MoDDD (May 2016)
Total State DD: 33,315
TCM Only: 16,210
TCM Plus Paid DD: 17,107
Of Paid DD, Residential: 7,012
Of Paid DD, State ICF/DD:
Waiting for clarification from Robin Rust to finish this slide
*Based on 1.58% prevalence of 6.1 million citizens, US Census (2015)
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.COM

22. Person within Context of Family
Family Life Experience Impacts Trajectory
Family Cycle Impacts Member Life Cycle
Biology: Likes, dislikes, skills, abilities
Policy:
Dreams, aspirations,
house rules, cultural rules, expectations
Environment:
Neighborhood,
socio-economic, education
Social: Family and friend network, connection with community members
Family Unit Impacts Individual Level Characteristics
Person within Context of Family

23. Vision of What I Don’t Want
Trajectory towards Good Life
Friends, family,
enough money,
job I like, home, faith, vacations, health, choice, freedom
Vision of What I Don’t Want
Trajectory towards Life Outcomes
Trajectory towards things unwanted
What kinds of things did you say earlier for YOUR good life? PWD and families usually want those same types of things. Everybody “gets” what the good life is. We just don’t usually ask them! What kinds of things do you think PWD and families will say they DON’T want? Sometimes you need to start there – they may not know what they want (because they are thinking in disability world) but they almost always can tell you want they don’t.
TRAJECTORY is the path that will either lead you toward the good life or toward things you don’t want. Think about throwing a football – the path that the ball takes on it’s way to the receiver is the trajectory. If you shoot an arrow, or a nerf gun – the path that the arrow follows is the trajectory.
Support coordinators, providers, DSP’s, VR counselors, teachers….. ALL have the power to impact someone’s trajectory, sometimes negatively, by their actions or words. We must be very careful and mindful of the impact we can have.
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

24. 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
How can you plan with people if you don’t know their finish line? Resource Center – we try to figure out WHY they are asking for a service – story about mom asking for DayHab because her son actually needed transportation to his job and dayhab has transportation.
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

25. Focusing on Life Experiences and Life Transitions
Summer jobs, babysitting
Chores and allowance
Learning to say “no”
Making Mistakes
Playing sports or an instrument
Birthday parties with friends
My parents have passed away, what do I do?
Scouts, 4H, faith groups
Parents Turn 65
Medicare & SSDI
Show them the LC Experiences booklet – talk about how people might use it.
Living Adult Life
Transition planning
Turning 18. Leaving school at 18 or 21
Leaving Early Childhood/ enter school
“Anticipatory Guidance
for Life Experiences”
Getting New Diagnosis
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

26. Focusing on Quality of Life Domains
Daily Life and Employment
(school/education, employment, volunteering, routines, life skills)
Healthy Living
(medical, behavioral, nutrition, wellness, affordable care)
Community Living
(housing, living options, home adaptations and modifications, community access, transportation)
Safety and Security
(emergencies, well-being, legal rights & issues, guardianship options & alternatives )
Explain each domain. They are all interrelated. The service system tends to want to focus only on health and safety.
Social and Spirituality
(friends, relationships, leisure activities, personal networks, faith community)
Citizenship and Advocacy
(valued roles, making choices, setting goals, responsibility, leadership, peer support)
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

27. Supporting the Needs of the Person and Their Family
Goods &
Services
(Day to Day, Medical, Financial Supports)
Discovery & Navigation
(Info and Training)
Connecting & Networking
(Talking to someone who has ‘been there’)
The 100% can have access to the 3 buckets
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

28. Integrated Star for Problem Solving and Navigation
resources, skills, abilities characteristics
i-pad/smart phone apps, remote monitoring, cognitive accessibility,
Adaptive
equipment
family, friends, neighbors, co-workers, church members, community members
MAPPING
PROBLEM SOLVING
PLANNING LTSS
PLANNING ACTIVITIES
We ALL do this without even thinking about it
school, businesses, church faith based, parks & rec, public transportation
SHS services, Special Ed, Medicaid, Voc Rehab, Food Stamps, Section 8 R
100%
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

29. Focusing ONLY on Eligibility Supports
Friends, family, enough money,
job I like, home, faith, vacations, health, choice, freedom
Eligibility Supports
Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

30. Relying ONLY on Family & Friends
Friends, family, enough money,
job I like, home, faith, vacations, health, choice, freedom
Relationships
Poverty, loneliness, segregation, restrictions, lack of choice, boredom, institutions
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

31. Ben’s Services & Supports
BEFORE: Services and Supports
Mom, Dad
Ben’s Services & Supports
DDD Self-Directed waiver PCA staff; Medicaid; Special Needs Trust
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

32. AFTER: Services and Supports
Able to stay home alone for up to an hour; has & can use i-pad;
i-pad when home alone; digital watch
Mom, Dad, Matt, Zac, Ali, Chad, Ericka, Roy, Carol, Nick, Spohn,
Ben’s Services & Supports
Firemen at ESFD; coaches & staff at ES high school; Omni bus;
DDD Self-Directed waiver PCA staff; Medicaid; Special Needs Trust
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

33. Comprehensive, Integrated & Coordinated Systems Across Life Domains & Stages
Pediatrician, Families and Friends, Faith based
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
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

34. then bring up the domains And then the buckets
First show the person,
Then show the family,
then bring up the domains
And then the buckets
And then the outer layers
All these things work together to make a good life.
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

35. Project Outcome 2 Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families.
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

36. ALL: Public Health Framework
Medical System
Flu Shot
Hand Washing
Anti-Bacterial Soap
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

37. Long Term Services and Supports
Constructing Universal Strategies for Supporting Individuals with Disabilities and Families Across the LifeCourse
Long Term Services and Supports
Family and Self-Advocacy Networks
Aging and Disability Resource Centers
No Wrong Door Initiatives
Area Agencies on Aging
Parent Training Info Centers for Education
United Way 211
P2P interacts both directions!!
Accessed by all citizens:
Faith based communities
Parks and Recreation
Businesses
Emergency Personnel
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

38. Focusing on the Needs of the Person and Their Family
Goods &
Services
(Day to Day, Medical, Financial Supports)
Discovery & Navigation
(Info and Training)
Connecting & Networking
(Talking to someone who has ‘been there’)
The 100% can have access to the 3 buckets
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

39. National CoP Structure
Technical Assistance from National Staff
Monthly Calls with All States
One on One TA calls with Teams or Facilitator
Yearly Face to Face Meeting
Annual TA visit in states
Topical Specific Webinars (Family Networks, Framing)
Knowledge Translation and Dissemination
National Webinars on Learning
Issues Briefs
E-newsletter
Increased Social Media Presence
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

40. State CoP Structure Lead Agencies State DD Agency* DD Council* UCEDD
Family Network
Pediatrician, Families and Friends, Faith based
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
CoP State Structures
State CoP Leadership Team
CoP Committee Members
Annual CoP Stakeholder Events
Systems…………….childhood=pediatricians……………………aging
Trajectory towards a life in the community
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

41. CoP Expansion: 10 New States Starting in July 2016
Project Outcome 3 Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.
CoP Expansion: 10 New States Starting in July 2016
© 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

42. Ways to Get involved! supportstofamilies.org
NASDDDS June 2016 Conference
Website
State Updates
LifeCourse Framework Resources
Listserv for Project Highlights
Webinars (Quarterly Live and Archived)
supportstofamilies.org

43. Contact Information Sheli Reynolds