The document provides an overview of efforts by several states - Connecticut, Missouri, Tennessee, and Washington - to support families who have members with intellectual and developmental disabilities (I/DD) through the lifespan as part of a national Community of Practice. The states are working on initiatives like reframing their messaging to focus on supporting families, developing tools and materials to help families navigate services, and enhancing cross-agency collaboration to provide integrated supports. They are also gathering input from families to inform their efforts. The Developmental Disabilities Councils in these states are involved in the work by providing resources, disseminating information, and engaging stakeholders.

1. SUPPORTING FAMILIES AND
INDIVIDUALS WITH I/DD
THROUGHOUT THE LIFECOURSE
An update on the Community of Practice
Mary Lee Fay – NASDDDS
Molly Cole, Cathy Adamczyk, CT
Emma Shouse, Wanda Willis, TN
Vicky Davidson, MO

2. Outcomes for Today
• Overview of the National Community of Practice on
Supporting Families
• Share on the key areas of learning in States

3. 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.

4. Funded by
National Partners

5. DCCT MO
TN WAOK

6. Type of Change that is Needed
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
Transformation Change
• 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

7. Long Term 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 the individual to
achieve their goal

8. REFRAMING OUR THINKING
What have we learned? Reframing the Conversation at All Levels

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

10. INDIVIDUALS
live within
the context of
THEIR FAMILY

11. Reciprocal Roles of 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

12. There are FAMILY CYCLES!!
The FAMILY is a SYSTEM!!

13. Supports should Enhance Real Lives

14. Current Support System

15. Real People, Real Lives
with Integrated Supports

16. 16
Birth-----Early Child----School----Transition---Adulthood-----Aging
Bigger than Family Support:
Requires Organizing Culture, Policies and Practices

17. Thinking About All Life Stages
Birth---Early Child---School--Transition------------Adulthood-----------Aging
Both in practice with individuals and
in policy changes for systems

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

19. 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

20. 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
Inter-Agency Collaboration
and Partnerships

21. Support Physical, Emotional,
Intellectual and Financial Well-being

22. Systems Change Framework
*Adapted from SELN Framework

23. Working Premises Regarding
CoP
23

24. DCCT MO
TN
WAOK
What is happening in the CoP States?

25. Connecticut
What Are We Working On?
Reframing the Message and
Conversations
Help people think differently about services and
supports through materials development and
meetings/discussions.
Help families and self-advocates value and
implement the concept of shared responsibility.
Increase the use of assistive technology as a form
of support.
Help families think about community services
differently.

26. Organize A Collective Voice of Self-Advocates and
Families Representing Systems Change.
 Plan a large conference for fall, 2015.
 Build a stronger partnership between self-advocates and
families, including siblings.
 Organize the collective voices of families and self-
advocates for system change.
Connecticut
Strategies

27. Connecticut
• One full-time staff in Central office to focus on
systems change to support families
• CT Team: DDS Staff (1), DD Council staff (2), and
CT Family Support Network representative (1)
• Changing eligibility process to be more family
friendly
• Cross-department life course team
• Creating sibling network
• Creating consistent message
• Focus on building “community teams” with new
partners

28. Sub-Committee Topic Purpose of the Group
Information Dissemination Enhance the supports to families to navigate
and access information and services within
and outside the disability service systems.
Family Mentoring & Leadership Expand family to family connections and
enhance family’s ability to participate in
leadership roles.
Training & Education Enhance family access to family education
and training best practice information.
Self-Directed Services & In-Home Supports Enhance family’s ability to self-direct their
services and to receive desired type and
quality of in-home supports.
Social Supports & Respite Expand & enhance opportunities for
individuals to develop positive relationships
with others through social connections and
expand respite opportunities for families.
Positive Behavior Supports Enhance crisis prevention, crisis intervention
and positive behavior supports to individuals
and their families
Person-Centered Housing Expand and enhance creative housing
options that are based upon person-centered
planning and personal choice
Employment Expand individuals access to competitive jobs
Healthy Living Enhance family access to health information
& to community-based health services
Technology Expand & enhance the use technology at
home, at work and while participating in
leisure activities

29. Connecticut
Committee Activities
All committees are creating information dissemination and
navigation materials which provide an overview of the most
important elements families need to know about their topic.
Materials will be organized around the five areas of
support:
 Family Strengths/Assets
 Assistive Technology
 Community Supports
 Other Eligibility Supports
 DDS Supports
•All committees will create a survey or data report that will
be completed at least annually.

30. Connecticut
The DD Council’s Role
 Provide staff, council participation, oversight and
support to all project activities.
 Provide financial oversight of grant funds.
 Report on the Community of Practice at each
Council meeting. Ensure Council participation at
committee meetings and other events.
 Interface with other Council initiatives that
enhance the work of the CoP like the CT Cross
Disability Alliance, support for the Family Support
Conference and Partners in Policymaking
training.

31. Missouri
What are we working on
• Enhance the capacity of State DD agency to
support families with members with
developmental disabilities
• Establish a materials that serve as a vision for a
“good life” that serves as the “why” that guides
systems and policy changes
• Develop universal tools for Individuals with DD
and Families to use to Navigate Lives
• Enhance capacity of organizations to support
individuals and families using LifeCourse
Framework

32. Missouri
• States lead an 12 Regional TA positions for
systems change efforts to support families
• Retraining program for support coordinator
• Partnerships for Hope Waiver focuses on
employment and supports to families
• Quality Outcomes redesigned to align with live
domains

33. Missouri
What the State Team is Working On
Building a statewide movement and
network to support LifeCourse
philosophy and elevating the role of
“supporting families” in policy and
practices

34. Missouri
Specific Activities
• Enhance the capacity of State DD agency to
support families with members with
developmental disabilities
• Collecting videos of a “good life” that serve as the
“why” that guides systems and policy changes
• Developing LifeCourse tools for Individuals with
DD and Families (LifeCourse planning tools,
folders)
• Elevating “voice of family” in the Redesign of
system
• Infusing “family focus” in Employment activities

35. Missouri
Division of Developmental Disabilities
• Family Support Coordinators at each of 12
Regional Offices with one statewide
• Developing training and resource materials on
LifeCourse for support coordinators to use with
families
• Changing the “front door” through direct referral
to the MoF2F to receive information/peer support
• Partnerships for Hope Waiver focuses on
employment and supports to families
• New Quality Outcomes redesigned to align with
live domains

36. Missouri
Developmental Disabilities Council
• Longstanding partnership and support of Mo
Family to Family Network and Resource Center
with UCEDD
– Disability Resource Folders and LifeCourse materials
– Alternatives to Guardianship Education Project
embedded in MoF2F to sustain and increase
dissemination outreach
– Identification and training of Self-Advocate and
Family Leaders as peer support mentors

37. Missouri
Developmental Disabilities Council
• Infused LifeCourse Framework and Supporting
Families information into Partners in
Policymaking (annual class/post graduate)
• Focused day at DD Council retreat in March on
CoP using LifeCourse framework to organize
• Hosting Listening Sessions and Survey to
gather input from self-advocates and families
on the Missouri Redesign
(ourvoicemoredesign.org)

38. Tennessee
What are we working on
• Communication/Information Dissemination
– Inform and educate families and stakeholders in TN about:
• Supporting Families grant, framework
• Our state team’s commitment to learning from and listening
to voices of families, self-advocates
• Our desire to collaborate and innovate with existing and new
non-traditional partners to achieve a “culture shift” to truly
support families
• Redesigning intake and waiting list case management
– Investigating how to weave Supporting Families framework
into support and assistance DD service agency provides to
families not receiving services

39. Communication/
Information Dissemination
• Supporting Families monthly e-newsletter
• Special issue of Council magazine
• Resource folder
• Multiple presentations, focus groups at TN
Disability MegaConference
• Lunch and Learn event for state agency
staff
• Upcoming:
– Presenting on S.F. framework at forums
across TN for families/self-advocates
served under our Self-Determination
waiver
– State agency focus group

40. What have we learned from families?
FAMILIES NEED …
• To develop high expectations
• Support from other families
• Assistance navigating service systems
• Flexibility & self-direction in services
• Knowledge about what’s coming next & help
planning for future
• Info on resources at variety of locations
throughout communities
• “No wrong door” approach to services
• Support to become active participants in their
own communities

41. TN Council’s role
• Convene & facilitate state leadership team (principal
DIDD & Council staff)
• Develop & disseminate written materials about
initiative
• Organize ‘Lunch & Learn’ for state agencies –
personally recruited executive staff & Cabinet
members
• Collect & share letters from families in response to
e-newsletter
• Sponsor strategic planning event for state team with
facilitator

42. Washington
• Infused the lifecourse concept into their
existing “Informing Families, Building Trust”
messaging efforts
• Integrating “supporting families” into the K
Plan
• Surveyed families who were on the “no paid
services”
• Redesigning the process for the first point of
contact

43. Washington
• Informing Families, Building Trust