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

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

Setting the Stage: Current Reality

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

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

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 2013. 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 2013. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration. © 2015 | UMKC Institute for Human Development, UCEDD | SUPPORTSTOFAMILIES.ORG

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

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

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

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

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

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

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

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

Guiding Principles of the Supporting Families LifeCourse Framework

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

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

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

Focus on ALL

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

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: 360 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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Contact Information Sheli Reynolds reynoldsmc@umkc.edu