District of Columbia Team 1

Individuals in DC with I/DD 23% (2,228) 77% (7,404) Receiving DDS Services *Based on 1.49% prevalence, S. Larson, University of Minnesota (2013) 9,632 individuals estimated to have Developmental Disabilities* Inside the State System Living independently or with family796 IDD Waiver1,655 ICF/IDD330 Waiting List0 Not Receiving DDS Services 2

Current Reality In State New Mayoral Administration (January 2015) New Developmental Disabilities Administration (DDA) Director (June 1, 2015) New Committee on Health and Human Services Increase in proposed FY16 budget for DDA, but spending pressure because of delays in waiver amendment approval Working to close out Evans class action litigation No Wrong Door Planning grant and redesign of LTSS delivery HCBS Settings Rule and Transition Plan Commitment of adults with IDD to community based services Gaps in services and supports – adults with DD or TBI; no coordinating agency for kids Employment First initiatives in progress Strong PCT initiative National Resource Center on Supported Decision-Making in DC and housed within a Core Team partner agency 3

THEN and NOW: Our State CoP Vision, Goals and Priorities Year One GoalsCurrent Goals Engage community at large, including families we have not previously reached, non-profit and government partners, etc. Our overarching goals are the same, but our strategies and approaches have broadened and we have modified our projected outputs based upon what we have learned from the CoP and availability of new opportunities. For example: Working with NCCC through NWD Need for DC P2P Supported Decision-Making as part of plan to end commitment No Wrong Door planning Advocacy Guide Create a framework for flexible self- directed person and family-centered supports. End commitment of people with I/DD and return decision-making to the hands of people with I/DD and their families Plan to address service gaps, including services to adults with DD; adults with TBI; and coordination of services for kids. 4

THEN and NOW: Our State CoP Stakeholders and Partners Year One PartnersCurrent Partners Core Team Department on Disability Services Developmental Disabilities Council Georgetown University Center for Child and Human Development Quality Trust for Individuals with Disabilities Core Team ADDED Project ACTION! Health Service for Children with Special Needs, Inc. Advocates for Justice and Education State Team Parents Advocates Leaders Project ACTION! University Legal Services (DC’s P&A) School Talk Parent Leaders Almost entirely people with I/DD and their families State Team ADDED Male Caregivers Support Group DC government agencies – Education, Aging/ ADRC (goal to add more) Service providers of people with IDD Georgetown University Law Center National Resource Center on Supported Decision-Making DLA Piper 5

Overview of Core Team Activities How often do we meet? Core team meets monthly. State team meets quarterly. Subcommittees meet as needed. How many people attend? 60 people at our last state team meeting, the great majority of whom were people with I/DD & family members How do we structure the agenda? Introductions Overview of the CoP – review of goals and progress Interactive group discussion on meeting topic(s)- facilitated to ensure that we can hear from everyone, recognizing that each person comes to the table with a different comfort level and advocacy skills and experience Report out and opportunity for feedback on subcommittee work Closing 6

Community Engagement Bucket of Support: Information How did we choose? Families are the experts on the supports they need. We needed a trusted feedback loop so that our work could be guided and well-informed. How did we get started? Reached out to trusted family leaders to begin building relationships. Started with people with I/DD and their families to create a safe space for exploration. Stipend policy and procedure, PCT approach to reframe conversation around people’s strengths and shared responsibilities for change. Who is it focused on? People with I/DD and their families across lifespan and regardless of whether receiving formal supports. What are we doing? Outreach through Core Team partners and trusted family leaders. Advocacy Across the LifeCourse guide to build the voices of families. 7

Community Engagement How are we sustaining it? Family Support Council created by legislation. Legislative authority for stipends. Train the Trainer: Families Planning Together (One Page Positive Profiles). How are we collecting data? List-serv has grown from 50 – 200. Attendance has grown from 30 – 60. How have we applied the LifeCourse framework? Engaged families, non-profits, and gov’t agencies across LifeCourse. Framed conversation around the Trajectory and Integrated Supports. Development of Advocacy Across the LifeCourse guide. What are our success and outcomes so far? Growth in core team, state team, list-serv & info-dissemination partners. Increased participation at DDS, DDC, and Council of DC. Launch of Family Support Council – first meeting June What are our biggest challenges? Need to increase cultural and linguistic competency. Better engagement with fathers and siblings. 8

Family-Centered Supports Bucket of Support: Goods and Services & Peer How did we choose? DC currently has only a comprehensive waiver for adults with I/DD. We do not yet offer self-direction. Many support groups, but no P2P chapter offering peer supports across the lifespan and across disabilities. How did we get started? Community mapping to understand what supports are already in place. Working/ Not Working conversation with families about existing supports. Who is it focused on? People with I/DD and their families in need of formal and informal LTSS. What are we doing? Working with Medicaid agency and subject matter expert to build a framework for participant directed services. Research on innovative and best practices. Working with National P2P to launch a DC chapter of P2P. 9

Family-Centered Supports How are we sustaining it? Development of a DC P2P chapter to offer ongoing peer-to-peer support. Development of a Medicaid infrastructure for participant directed services. Introduction of LifeCourse tools to ISP for integrated supports planning. Family trainers for Families Planning Together Revitalization of DDA Advisory Committee to guide IFS waiver planning. How are we collecting data? Qualitative data collected at each state team meeting. How have we applied the LifeCourse framework? Using the trajectory to talk with families about what a good life looks like and what supports are needed. Families Planning Together train the trainer curriculum includes Trajectory. What are our success and outcomes so far? Families have used PCT skills to improve services under current model, including more positive and effective doctor’s appointments, IEP and ISP meetings and training of direct support staff. What are our biggest challenges? Encouraging staff and families to think about integrated supports is a culture shift. Drafting and funding an IFS waiver. Sustainable funding for DC P2P. 10

Ending Commitment Bucket of Support: Info & Goods and Services How did we choose? DC is the only jurisdiction that commits adults to community based services, taking decision-making away from people and their families as part of the front-door to residential supports. Recent history of legislative reform efforts indicated need to understand how families envision ensuring health and safety and mitigating risk without legal structure of commitment. How did we get started? Talked with families about their experiences with commitment and guardianship (working/ not working); barriers to family and self-determination; and about what they would find useful as an alternative strategy to keep their loved ones safe. Who is it focused on? People with I/DD in need of formal residential supports and their families. What are we doing? Co-hosted state team meeting with National Center on Supported Decision-Making (SDM). Establishing a subcommittee to examine legal infrastructure that supports or poses a barrier to SDM. 11

Ending Commitment How are we sustaining it? Advocacy Guide to strengthen voices of families. Will make recommendations to the Mayor for legislative reform by September 30, How are we collecting data? Qualitative data collected at each state team meeting. How have we applied the LifeCourse framework? Using the trajectory to talk with families about what a good life looks like and what supports are needed. What are our success and outcomes so far? CHHS has asked for a comprehensive analysis of the impact ending commitment in the District. (December 1, 2015) What are our biggest challenges? Community opposition. 12

Expansion of Service System Bucket of Support: Goods and Services How did we choose? DC is one of two jurisdictions that supports only adults with I/DD. Significant service gaps for adults with DD; and lack of coordination of supports for youth. Recent history of legislative reform efforts indicated need to work with the community to understand how to fairly provide supports within available funding (establishment of a waiting list). How did we get started? Community mapping with families helped identify gaps and areas for increased coordination. Who is it focused on? People with intellectual or developmental disabilities and their families throughout lifespan. What are we doing? Advocacy Guide 13

Expansion of Service System How are we sustaining it? NWD planning includes gap analysis and re-envisioning the structure for delivery of LTSS. Advocacy Guide to strength voices of families. How are we collecting data? Qualitative data collected at each state team meeting. Assessment through NWD. How have we applied the LifeCourse framework? Conducted community mapping across the LifeCourse. What are our success and outcomes so far? CHHS has asked for a comprehensive analysis of the impact of extending eligibility for DDS services to all individuals in the District meeting the broader definition of developmental disabilities. (December 1, 2015) What are our biggest challenges? Funding. 14

Biggest Lessons Learned So Far The participants of the DC CoP have an enormous amount of collective knowledge and an important role for the CoP is to provide space for that knowledge to be shared. Families need support to participate to their fullest potential (stipends, transportation, meals and timing). Building mutual trust and support with family members who are leaders and trusted in the community is key. Core team members must be willing to invest time, resources, and leadership to create and sustain the CoP. Work of the CoP must be braided into other systems-change initiatives so that we can bring this to scale. Using PCT skills helps families to re-frame a conversation that is driven by a service system focused on compliance. Families are struggling with how to support people with I/DD to build relationships with friends and community members. 15

Vision for Next Year If next year goes exactly as planned, what will your state team achieve? Community Engagement Continued growth in partnerships at State Team level. Increased participation in subcommittees. Increase in diversity of state team members. Training of families in Families Planning Together Family Centered Supports Start up of DC P2P. Work with families to draft innovative IFS waiver with self-direction, with a planned launch for FY Ending Commitment Introduction of legislation to end commitment. Advocacy by people with I/DD and their families. Begin to implement recommendations re: Supported Decision-Making Expansion of Service System Receive NWD implementation funds and begin to redesign front door to all LTSS so that they are person and family centered and support people throughout the lifespan. 16