SUPPORTING FAMILIES AND INDIVIDUALS WITH I/DD THROUGHOUT THE LIFECOURSE

An update on the Community of PracticeMary Lee Fay – NASDDDSMolly Cole, Cathy Adamczyk, CTEmma Shouse, Wanda Willis, TNVicky Davidson, MO

Outcomes for Today

• Overview of the National Community of Practice on Supporting Families

• Share on the key areas of learning in States

Project GoalTo 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.

Funded by

National Partners

DCCT MO

TN WAOK

Type of Change that is NeededTransitional 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

Long Term Goal

“Good Life for All”The Individual will achieve self-determination,

interdependence, productivity, integration, and inclusion

in all facets of community lifeFamilies 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

REFRAMING OUR THINKINGWhat have we learned? Reframing the Conversation at All Levels

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%

INDIVIDUALS live within

the context of THEIR FAMILY

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 membershipAdvocate for support

There are FAMILY CYCLES!!

The FAMILY is a SYSTEM!!

Supports should Enhance Real Lives

Current Support System

Real People, Real Lives with Integrated Supports

16

Birth-----Early Child----School----Transition---Adulthood-----Aging

Bigger than Family Support:Requires Organizing Culture, Policies and Practices

Thinking About All Life Stages

Birth---Early Child---School--Transition------------Adulthood-----------Aging

Both in practice with individuals and in policy changes for systems

Identifying Integrated Strategies for Delivery Supports: Not only DD Services

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

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

Support Physical, Emotional, Intellectual and Financial Well-being

Systems Change Framework

*Adapted from SELN Framework

23

Working Premises Regarding CoP

DCCT MO

TN

WAOK

What is happening in the CoP States?

ConnecticutWhat Are We Working On?

Reframing the Message and ConversationsHelp 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.

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.

ConnecticutStrategies

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

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

ConnecticutCommittee 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.

ConnecticutThe 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.

MissouriWhat 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

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

MissouriWhat 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

MissouriSpecific 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

MissouriDivision 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

MissouriDevelopmental 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

MissouriDevelopmental 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)

TennesseeWhat 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

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

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

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

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

Washington

• Informing Families, Building Trust