DC Supporting Families of People with I/DD Throughout the Lifespan Community of Practice July 24, 2015

Our Core Team Members 2

DC by the Numbers 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 family 796 IDD Waiver1,655 ICF/IDD330 Waiting List0 Not Receiving DDS Services 3

Who receives DD LTSS? 75% National % Receiving State DD Services 25% -Unaware of disability specific services -Do not want disability specific services -Have a diagnosis but don’t meet “eligibility criteria” in that state system All 4.9 Million people with developmental disabilities

Person Centered Thinking Drives Systems Change One Page Profile Template and Sample [INSERT NAME]’s One-Page Profile What is Important to me: What People Like and Admire about me: Supports I Need To Stay Happy, Healthy & Safe: For a good match: characteristics needed to be present or absent Insert Photo Here

Levels of Change

Level 3 Changes Needed in DC Peer support throughout the lifespan Coordinated services and supports Supports for self-determination Person and family centered supports Comprehensive supports for people with DD throughout the lifespan

Alternatives to Guardianship and Commitment

Decision- Making Supports Technology Videos Smart Phone Computer Communication Device Direct Deposit & Auto Bill Pay Personal Strengths Ability to communicate Knows who to trust Relationship Based Family POA SDM Joint Bank Account Eligibility Specific Guardian Representative Payee Special Needs Trust Community Based Peer support Clergy Advisors (Medical, Financial)

No Wrong Door Stakeholder Input People with disabilities and seniors have told us they want:  Help navigating the system  Single case management system for all services  Continuity of support throughout the lifespan  Better coordination between government agencies  Great customer service  Focus on what people can do  Support for family caregivers  Holistic approach that goes beyond just paid LTSS  Community-based (access and services)  On-line with one website for everything  Support to live in the community as independently as possible  Person centered counseling, planning and service delivery

Supporting “Good Lives” for Persons with Developmental Disability and Their Families Mary Lee Fay, National CoP, NASDDDS Sheli Reynolds, National CoP, UMKC-IHD, UCEDD July 9, 2015

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Andy’s Integrated Supports Star Happy Energetic Sculptor Builder Loves numbers & letters Parents: Kari & Eli Family: Grandparents, Aunts Friends: Jay, Anna, Ian, Patrick Nanny: Mariah School Rec center Local splash pool Color Me Mine Parks Autism class at school Therapies Autism Outreach Boys Club I-Pad Computer: You Tube Television

Important to Important for Health & Safety Dictate Lifestyle Copyright SDA LLC

Person Centered Thinking Important to Important for Copyright SDA LLC How health and well being fits into the desired life – not either/or, but both/and.

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10:30 – 11:00Using the Integrated Supports Star 11:00 – 12:00Presentations on current efforts to gather and share resources via 211 & the ADRC 12:00 – 12:30Lunch Break 12:30 – 1:30Video & Discussion -- Let’s Talk About It: A Family Perspective 1:30 – 2:30Focus groups on resources to inform 211, ADRC, NWD & P2P 2:30 – 3:15DC Parent to Parent update and discussion 3:15 – 3:30Leading with Lollipops & wrap up Agenda for the Day