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DC Supporting Families of People with I/DD Throughout the Lifespan Community of Practice December 17, 2014 1

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Our Core Team Members 2

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Person Centered Thinking Drives Systems Change What is Important to What People Like and Admire about Supports Needs To Stay Happy, Healthy & Safe For a good match: characteristi cs needed to be present or absent Insert Photo Here 3

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Levels of Change 4

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What do people like and admire about me? Takes good care of his mom Taking good care of his home for 16 years Advocate for EVERYONE Outspoken and stands up for what is right Not afraid to call 311 and report something in the community that is not how it should be Great bowler Not afraid to be who he is He makes me feel more comfortable in my own skin. Thomass staff What is important to me? Having control over my life and the way I want to live Being involved in my community Taking care of my mom Being an advocate for people who need help Staying informed about current events like political issues and issues that affect people with disabilities To be treated with respect Nice smelling bath products (coconut, cucumber melon, etc.) Going to movies and theater shows Being around people I like Characteristics of people who best support me: People who are nice, respectful, dont make judgments and dont think of me as charity work Someone who can make healthy food taste good, Ive got taste buds for a reason! Someone willing to be on the go People who dont need me to agree with everything they say and who is not going to boss me around. People who are okay with not being in control, because I am in control Supports I need to be the best I can be: When my health and mobility issues flares up I need help cleaning myself, cooking, walking and maybe getting to the hospital Reading my mail Navigating to all my meetings Preparing for meetings, I prefer pre- meetings right before the meeting I need to know what people want me to talk about and what current events are going on so I stay informed Finding affordable social activities like theater and movies Thomass Profile 5

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What is Important to TRINITY I love music. I like to play the drums, piano, and tambourine. Sing songs with me and clap/dance to the rhythm of the beat. I am relaxed when I can feel my soft clothes and cross my legs. When I am tired, remove my shoes and braces so I can rub my feet. I like to play on the swings and slide at the park. My favorite food-grits and eggs; twizzlers What is Important to TRINITY I love music. I like to play the drums, piano, and tambourine. Sing songs with me and clap/dance to the rhythm of the beat. I am relaxed when I can feel my soft clothes and cross my legs. When I am tired, remove my shoes and braces so I can rub my feet. I like to play on the swings and slide at the park. My favorite food-grits and eggs; twizzlers What People Like and Admire about TRINITY Beautiful Smile and Spirit Incredibly Loving and Loveable Giver of great squeeze hugs Acts like little lady Rhythmic Ability Social Butterfly Comedian-Enjoys laughing Dancing Machine What People Like and Admire about TRINITY Beautiful Smile and Spirit Incredibly Loving and Loveable Giver of great squeeze hugs Acts like little lady Rhythmic Ability Social Butterfly Comedian-Enjoys laughing Dancing Machine Supports TRINITY Needs To Stay Happy, Healthy & Safe Obtain eye contact with me before giving instructionstry singing my name I can hear you best on my left side. Give me time to process your instructions. Use one word instructions, Trinity.Come, Sit, Walk, Hands Down Watch my facial expressions and gestures to understand what I am communicating. Allow me to visibly examine new things before accepting. I can feed myself and I get feeds through a gastronomy tube. Make sure my food is cut up into small pieces (no tough meat). I need assistance balancing my cup when I am drinking. Although I drink with a straw, help me control my cup so I do not choke. Help me walk up and down stairs. Use my wheelchair when I am tired and/or we take long walks. Keep your eyes on me because I am a determined explorer. Supports TRINITY Needs To Stay Happy, Healthy & Safe Obtain eye contact with me before giving instructionstry singing my name I can hear you best on my left side. Give me time to process your instructions. Use one word instructions, Trinity.Come, Sit, Walk, Hands Down Watch my facial expressions and gestures to understand what I am communicating. Allow me to visibly examine new things before accepting. I can feed myself and I get feeds through a gastronomy tube. Make sure my food is cut up into small pieces (no tough meat). I need assistance balancing my cup when I am drinking. Although I drink with a straw, help me control my cup so I do not choke. Help me walk up and down stairs. Use my wheelchair when I am tired and/or we take long walks. Keep your eyes on me because I am a determined explorer. Supports, Etc. If you see me flap my arms, eyes roll back in head and my body straightens (seizure), lay me on my left side and call 911. I need to get 8-10 hours of rest at night. If not, I may need cat nap in the day. After I eat, I need to sit up for at least 15 minutes. Supports, Etc. If you see me flap my arms, eyes roll back in head and my body straightens (seizure), lay me on my left side and call 911. I need to get 8-10 hours of rest at night. If not, I may need cat nap in the day. After I eat, I need to sit up for at least 15 minutes. I LOVE MY FAMILY!!!! Mommy-Rhonda Daddy-Robert Brothers-Tristan and Tyler Sissy-Tiffani I LOVE MY FAMILY!!!! Mommy-Rhonda Daddy-Robert Brothers-Tristan and Tyler Sissy-Tiffani TRINITY GABRIELLE 6

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Level 3 Changes Needed to Support Families of People with I/DD in D.C. Family-to-family peer support Coordinated services across the lifespan Supports for self-determination High quality, person and family centered supports for people with I/DD Comprehensive supports for people with DD 8

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Work in Progress on Level 3 Changes to Support People with I/DD & Families Individual and Family Support waiver No Wrong Door planning grant Draft Citizens with Intellectual Disabilities Civil Rights Restoration Act Supported Decision-Making Family Support Council And more to do.... Coordinating agency for children with disabilities Services for adults with developmental disabilities 9

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Agenda for Today Working/ Not Working National Perspective, Mary Lee Faye, NASDDDS Local Perspective, Laura Nuss, DDS Updates Advocacy DC Parent to Parent PCT Membership Expansion Meet AJE Thankful and hopeful 10