1. Mary Lee Fay, National CoP, NASDDDS
Sheli Reynolds, National CoP/Missouri, UMKC-IHD
Monday, November 10, 2014
AUCD, Washington, D.C.
What are We Learning from the Community of Practice with Six States on Supporting Families  
Across the Life Course
John Agosta, Human Services Research Institute; Yoshi Kardell, Human Services Research Institute; Mary Lee Fay, National Association of 
State Directors of Developmental Disabilities Services; Sheli Reynolds, University of Missouri-Kansas City P
articipants will learn about the National Community of Practice on Supporting Families, which is focused on building capacity to create 
policies, practices, and systems to better assist and support families that include a member with intellectual disability across the life 
course. This session will provide an overview of the national framework and lessons learned from the six states that are participating in the 
National Community of Practice. 

2. About Us…. Mary Lee Fay Sheli Reynolds
Formerly Director of State Developmental Disability Services in Oregon
NASDDDS, Co-Principle Investigator CoP and National Core Indicators
Sheli Reynolds
Sibling of brother with developmental disability
IHD, Mo UCEDD, Director of Individual Advocacy and Family Supports
Co-Principle Investigator CoP

3. Outcomes for Today
Overview of the National Community of Practice on Supporting Families
Introduce the framework for “reframing the conversation and solution finding” at all levels
Share key areas of learning in States
Discuss next steps and ways for others to get involved
Participants will learn about the National Community of Practice on Supporting Families, which is focused on building capacity to create 
policies, practices, and systems to better assist and support families that include a member with intellectual disability across the life 
course. This session will provide an overview of the national framework and lessons learned from the six states that are participating in the 
National Community of Practice. 

4. Initiatives that Lead to CoP
Developmental Disability Act
1986 Meaningful participation of individuals with disabilities and families in provision of services and policies
2002 DD Act Title II: Family Support (unfunded)
Projects of National Significance
Statewide Systems Implementation Grants
Family Support 360
Family Support 360 Military Focused
AUCD Family Support SIG
National Agenda on Supports to Families, Wingspread (2011)

5. Defining Supports to Families
DISCOVERY AND NAVIGATION
Knowledge & Skills
CONNECTING & NETWEORKING
Mental Health & Self-Efficacy
GOODS &
SERVICES
Day-to-Day &
Caregiving/Supports

6. 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

7. 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

8. 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.
Project Outcome
State and national consensus on a national framework and agenda for improving support for families with members with I/DD.
Enhanced national and state policies, practices, and sustainable systems that result in improved supports to families.
Enhanced capacity of states to replicate and sustain exemplary practices to support families and systems.

9. Funded by
National Partners

10. DC CT MO WA OK TN

11. State Team Leads Missouri State DD: Valerie Huhn
Council: Vicky Davidson
Facilitator: Lisa Nothaus, State DD
Connecticut
State DD: Terri Macy
Council: Molly Cole
Facilitator: Robin Wood, State DD
Oklahoma
State DD: JoAnn Goin
Council: Ann Trudgeon
Facilitator: Vyonda Martin, UCEDD
Tennessee
State DD: Debbie Payne
Council: Wanda Willis
Facilitator: Laura Doutre, State DD
District of Columbia
State DD: Cathy Anderson
Council: Mathew McCollough
Facilitator: Erin Leveton, State DD
Washington
State DD: Evelyn Perez
Council: Ed Holen
Facilitator: Ed Holen, DD Council

12. National CoP Structure
Y1-2: 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)
Y3-5: TA and Knowledge Translation
National Webinars on Learning
Issues Briefs
E-newsletter
Increased Social Media Presence

13. Why focus on families, why now?
Setting the Stage: Increasing Awareness of Need to Focus on Families
Why focus on families, why now?

14. Baby-Boom Generation
National Institute on Aging

15. Shortages of Care Givers as America Ages
A labor shortage is worsening in one of the nation's fastest-growing occupations—taking
care of the elderly and disabled-just as baby boomers head into old age.
Wall Street Journal
April
Larson, Edelstein, 2006

16. Pressures on Funding

17. 89% of People I/DD are Supported by Family

18. Family Caregivers Have Always Been the Backbone of the Nation's Long-Term Care System
39% of all adult Americans (2 of every 5) care for a loved one who is sick or disabled, an increase from 30 % in 2010.
It is not just women doing the caregiving.
Men are almost as likely to be caregivers as women (37% m; 40% w)
36% of Americans between ages are caregivers
Almost half of family caregivers perform complex medical/nursing tasks for their loved ones — such as managing multiple medications, providing wound care, and operating specialized medical equipment.

19. Does Everyone Have to Live with Their Family?
No……….it means we must:
Focus on supports for those living in the family home where it is working and it’s what people want
Maximize an array of support strategies beyond only depending on 24 hour residential models
Recognize the contribution and importance of family members in the lives of members with a disability that live outside of the family home

20. Where Do People with I/DD Live
1.2 Million receive services
44% Residential Support
56% Live on own or with family
4.7 Million people have IDD
11% Residential Support
89% Live on own or with family
44%
56%
11%
89%

21. Type of Change that is Needed
Transformation Change
Transitional 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
Creating Blue Space, Hanns Meissner, 2013

22. Guiding principles and LifeCourse framework
Reframing the Conversation at All Levels
Guiding principles and LifeCourse framework

23. People with disabilities and their families have the right to live, love, work, play
and pursue their life aspirations just  as others do in their community.
It’s as simple as that.  No more and no less. 
And if you believe that, as I do, then you might be the type of person who believes that in this future individuals with disabilities and their families:
Ought to be Are in charge of the supports they receive to the extent they can be.
Ought to Have opportunities across their life course and the many facets of their life to use resources flexibly and in ways that enhance their lives and help them to participate in their communities.
May Offer support to each other and others in their community to enhance the well-being of all. 
Have a shared responsibility with policy makers for the wise use of public dollars to assure that the diverse needs of all families and individuals can be met now and in the future. 

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

25. National % Receiving State DD Services
Focusing on ALL
All 4.9 Million people with developmental disabilities
25%
75%
National % Receiving State DD Services
Based on national definition of developmental disability with a prevalence rate of 1.49%

26. 65% Missourians with I/DD (62,498) 13% 19% Enrolled HCBS DD Services
95,498 estimated Missourians with Developmental Disabilities 3%
13%
65%
(62,498)
19%
ICF/DD
Enrolled HCBS DD Services
Information about Missouri by Age
0-5
6-18
19-64 65
Total
362,650 (6%)
1,045,641 (17.3%)
3,747,386 (62%)
888,537 (14.7%)
citizens
5729
16,521
59,209
14,038
95,498 with DD
2,014
9,966
21,571
1,200
Total Served by DDD
State DD Services
Targeted Case Management
Based on 1.58% prevalence of million citizens, US Census

27. 73% Oklahomans with I/DD (44,002) 15% 12% Enrolled State DD Services
60,277 estimated Oklahomans with Developmental Disabilities
15%
73%
(44,002)
12%
Enrolled State DD Services
Waiting for State DD Services
Based on 1.58% prevalence of million citizens, US Census

28. All individuals live within the context of a family
Individual members and their family, as a whole, may need supports that address different facets of life and that adjust as roles and needs of all family members change as they age through both the life cycle and the family cycle.
(Regardless of where a person lives)

29. Lifelong Impact of Family on Individual
Biologically: Likes, dislikes, skills, abilities
Policy:
Dreams, Aspirations,
House rules, cultural rules, expectations
Environmentally: Neighborhood, socio-economic, education
Socially: Family and friend network, connection with community members

30. Evolving Family Systems
Individual Life Cycle
Family Life Cycle

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

32. Life Outcomes
Vision of a “Good Life”
Individuals and families have a vision for a good life that focuses on positive on life experiences that foster self-determination, community living, social capital and economic sufficiency for all.

33. Trajectory towards Life Outcomes
Friends, family, self-determination, community living, social capital and economic
sufficiency
Trajectory towards Outcomes
Vision of What I Don’t Want
Trajectory towards things unwanted
Both in practice with individuals and
in policy changes for systems

34. Focusing on Life Experiences
Birth-----Early Child----School----Transition---Adulthood Aging
“Volunteering at church”
“Making mistakes”
Learning to say “no”
“Birthday parties with friends”
“Playing sports or an instrument”
“Chores and allowance”
“Anticipatory Guidance for Life Experiences”

35. Thinking Across All Life Domains

36. Supports should Enhance Real Lives

37. Three types of supports
Discover & Navigation
Goods &
Services
Connecting & Networking

38. Identifying Integrated Strategies for Delivery Supports: Not only DD Services

39. Engage, Lead and Drive Policy and Systems Change

40. Applying the framework to Transformational Change
Community of Practice Teams “Create Space for Innovation”
Applying the framework to Transformational Change

41. Integration of All Movements
1950s Parent-----Family-----Siblings
1960s State Service Systems
1980s Medicaid Waiver
1990’s Family Support Programs
Community
Family
Person with Disability
1970s Self-Advocacy-----Youth
2010s Community

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

43. Eligibility Based Supports
Developing Innovative Strategies for Transformation within and outside DD
Eligibility Based 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

44. Identifying Key Drivers and Indicators for Systems Transformation and Implementation
*Adapted from SELN Framework

45. Think Across Generations
Age
0-5
6-18
19-64 65
Total TN Population
406,659 (6.3%)
1,084,425
(16.8%)
4,047,231
(62.7%)
916,597
(14.2%)
Approx. DD
(1.59%)
6,465
17,242
64,350
14,573
6.3
16.8
62.7
14.2
“The only thing constant in life is change”
― François de La Rochefoucauld
Total Pop
6.454,914
406659
1,084,425
4,047,231
916597
DD (1.59)
102633
6465
17242
64350
14573

46. Inter-Agency Collaboration
and Partnerships
Pediatrician, Families and Friends, Faithbased
IDEA Part C, Parents as Teachers, Health, Headstart
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

47. Supporting Families “Practices”
What is happening in States?
Supporting Families “Practices”

48. Practices for Discovery
Education, information and navigation strategies for the person with a disability and their family across the lifespan

49. Tennessee Communication Tools for Reframing
(e-newsletter, magazine, folder, website, social media)

50. Washington
Infused the lifecourse framework into existing “Informing Families, Building Trust” messaging efforts
Building virtual planning tool based on LifeCourse booklet

51. Missouri Consistent Message Across the LifeSpan
Family to Family at Missouri UCEDD
Early Childhood, Part C
School Districts, Special Education
PNS Show Me Career Grant Pilot Sites
State Division of Developmental Disability
Special Health Care Needs

52. Peer Support Practices
Tennessee: Created sub-committee enhancing, connecting and sustaining
District of Columbia: State has contracted with P2P USA to assist in starting chapter
Washington: Adult Sibling Focus group
Connecticut: Hosted Parents with Disabilities conference
Missouri: State agency contracted with F2F HIC for seamless front door

53. Leadership Development Practices
Missouri: Partners in Policymaking and Alumna Weekend
Oklahoma: Statewide Joining Forces Family Leadership Conference and Rural Leadership Institutes
District of Columbia: Family Stipends, Advocacy Training with Georgetown
Connecticut: Facilitating bringing together Family Networks to work together on advocacy and information dissemination

54. Practices Focused on Those Served by the State Service System

55. Connecticut
Two full time people in Central office to focus on systems change to support families
Cross department life span team
Community Teams
Information Dissemination
Family Mentoring and Leadership
Training and Education
Self-Directed Services and In-Home Supports
Social Supports and Respite
Positive Behavior Supports
Person Centered Housing
Employment
Healthy Living
Technology

56. Connecticut

57. Integrating Supports
Disability Specific: Medicaid Waiver Self-Directed
Relationship Based: Connecting and Staying Connected to Others
Technology Based: Virtual Connections
Community Based: TYZE.com

58. Person Centered Planning
Connecticut
Eligibility
Services
DDS Services
Person Centered Planning

59. Washington
Strong leadership and partnership of state DD Council with State DD system
Recommendations made to integrating “supporting families” framework and specific services into the new states K Plan
Exploring “a family component” into already strong use of NCI data to drive systems change

60. What does K Plan: Community First Choice change
about our current system?
Current:
Future:
Entitlements (State Plan)
Other Medicaid
Institutional
Home and Community-Based
Nursing Facilities or
ICF/ID
Medicaid Personal Care:
Personal Care
Waivers:
PERS
Equipment
Assistive Technology
Home Modifications
Respite
Therapies
Habilitation
Employment Support
Other
Current: client is eligible for one or the other
Home and Community-Based
Entitlements (State Plan)
Other Medicaid
Nursing Facilities or
ICF/ID
New - Community First Choice:
Personal Care
Required CFCO Services
Optional CFCO Services?
More Flexibility?
Improved outcomes
Waivers:
Will look different in some cases
May become more of a wrap-around service to CFCO?
Institutional
New: A client is potentially eligible for both

61. District of Columbia Currently Legacy System
Adults with Intellectual Disabilities only
Commitment to community based supports
Stalled at reforming the law
Developing new Legislation for DD Services
Budget Line Item for Supports to Families
Initiated Supporting Families Advisory Council
Connecting System Reform Initiatives Together (Employment First, Person Centered Thinking: Trained Family Facilitators, Supporting Families CoP)

62. Oklahoma State DD System
Existing initiatives focused on person centered planning
Enhance role of case managers and intake workers to focus on support to families
Governors Blue Ribbon Task Force using LifeCourse framework to guide conversations and plan development

63. Reframing Wait List Discussion
Information about Oklahomans with DD on Waiting List
0-5
6-18
19-64
65+
Total
Details
624
2579
3714 59
6,976
Names on Waiting List
114
620
850 11
1,695
On list, No known public benefits
510
1959
2864 48
5281
On list, Getting Some Public benefits

64. Integrated and Comprehensive Systems: Connecting the Dots
Employment First
Alternatives to Guardianship/Supported Decision Making
No Wrong Door Initiatives
Aging and Disability Resource Center
CMS Balanced Incentive Program
CMS Community Settings and Person Centered Rule
Family Information Systems Project
NIDRR newly funded RRTC on Family support
IDEA Performance Outcomes
HRSA Home Visiting

65. Future Supporting Families Practice Areas
Providers Partnering with Families
Self-Directed Supports and Families
Goods and Services Specific to Family or Caregiver
Building Capacity of Community to Support Families

66. What are we learning? Overall Themes
Balancing Focus on Person with Disability as we try to increase supports to families
Concept of “all” has made a major impact
Family support vs. supporting families
Aging families or “traditional mindset” families comfortable with the current system

67. What are we learning? Overall Themes
Thinking about integrated supports: Technology is really exciting people and Increased focused on what are “natural or informal supports”
People are “ready” and excited for the message and concrete, practical tools
The skill of “partnering” with other entities and with self-advocates and families is hard

68. Difficulties in Capturing Learning
Constant priorities and changes in state systems (policy, CMS, leadership, staffing, funding)
No operational definition of family support
Lack of defined evidence based practices
Data on “family” and “family support services” difficult to capture
Different Starting Points for Systems Change
Supporting Families is a cultural change, it is bigger than one system

69. Capturing Our Learning

70. supportstofamilies.org Mary Lee Fay
National Association of State Directors of Developmental Disabilities Services (NASDDDS)
supportstofamilies.org

71. Questions, Reflections and Discussion

72. Contact Information Mary Lee Fay Sheli Reynolds