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. 

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

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. 

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)

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

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

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

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.

Funded by National Partners

DC CT MO WA OK TN

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

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

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

Baby-Boom Generation National Institute on Aging

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 15. 2013 Larson, Edelstein, 2006

Pressures on Funding

89% of People I/DD are Supported by Family

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 18-29 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.  

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

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%

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

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

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. 

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)

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%

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%) 6044171 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 3.815 million citizens, US Census

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 3.815 million citizens, US Census

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)

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

Evolving Family Systems Individual Life Cycle Family Life Cycle

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)

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.

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

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”

Thinking Across All Life Domains

Supports should Enhance Real Lives

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

Identifying Integrated Strategies for Delivery Supports: Not only DD Services

Engage, Lead and Drive Policy and Systems Change

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Practices Focused on Those Served by the State Service System

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

Connecticut

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

Person Centered Planning Connecticut Eligibility Services DDS Services Person Centered Planning

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

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

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)

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

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

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

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

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

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

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

Capturing Our Learning

supportstofamilies.org Mary Lee Fay National Association of State Directors of Developmental Disabilities Services (NASDDDS) 703-683-4202 mlfay@nasddds.org supportstofamilies.org

Questions, Reflections and Discussion

Contact Information Mary Lee Fay mlfay@nasddds.org Sheli Reynolds reynoldsmc@umkc.edu