Friday, November 4, 2022
10:00AM EST - 1:40PM EST
Schedule
Below is the schedule of sessions for Friday, November 4.
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All sessions will be recorded and after the conclusion of the event, the recordings will be added just beneath the session description. Registrants will have up to 1-year to access this information post-event.
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If you have any questions, please email nyaii@nyalliance.org.
10:00AM-11:00AM EST Concurrent Sessions
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1. World Cafe: What Have We Learned About Shared Lives? A Time to Ask the Emerging Questions.
Aaron Johannes, Imagineacircle & Shelley Nessman, In the Company of Others
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The past couple of days have brought us many interesting conversations and presentations! This facilitated event is designed to debrief together and explore our learning. Your guides are Shelley Nessman and Aaron Johannes; Aaron will also work with Self-Advocate artist Liz Etmanski to graphically record your learning. Please join us for a World Café of “juicy questions” - Yours!
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Time to reflect, synthesize and celebrate “future forming ideas” (Ken Gergen)
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2. Biological Lifesharing & What Makes Pennsylvania Special for its Life Sharing Waiver Service?
Kathy Trumbore, Director of Lifesharing, KenCrest
Katie-Marie Wilson, Pennsylvania, Office of Developmental Programs
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In 2019 the Office of Developmental Programs (ODP) in Pennsylvania began allowing biological family members to provide Lifesharing with a loved one. Information from leadership of the PA State Lifesharing Coalition will share what requirements ODP has established, best practices, lessons learned, how this arrangement helps families to be able to support a loved one in their home, and the importance of a collaborative open working relationship between the family and the agency supporting them. We are hoping to have a family or two share their experience.
Pennsylvania is proud to be one of the leaders in having Medicaid waiver services that allows individuals with intellectual and developmental disabilities and autism to have choices of services that are provided in a home and community-based settings. One of those services is called Life Sharing, which may be rendered in a home that is owned or rented by the individual, relative, or non-relative. During this presentation, the Office of Developmental Programs (ODP) will discuss the Life Sharing service definition and how it has evolved over the years. This presentation will discuss how the state works side-by-side with providers, individuals, and families to ensure that quality Life Sharing services are being provided while ensuring that all individuals have an everyday life.
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3. Suit the Actions to the Words: Aligning Supports and Services with Federal Policy Equals Shared Living
Allan Bergman, President & CEO, HIGH IMPACT Mission-Based Consulting
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We often are told by state agencies, including Medicaid, they cannot fund Shared Living or Supported Living. This is not true. Separating housing from supports has been legal in Medicaid HCBS waivers since 1995. The CMS HCBS "Settings Rules", issued in 2014, are consistent with Supported or Shared Living as are the regs for a real Person-Centered Planning process with Informed Choice. The Settings rules and the language in law from Money Follows the Person sets a priority for the person with a disability choosing where they live, with whom they live, and the provider of any paid waiver supports. MFP limits this to four unrelated persons. U. of MN. research is clear that the number should be capped at 3 unrelated persons with disabilities, regardless of intensity of supports.
4. They Said He's Too "Dangerous" to Succeed: How Showed Them How Wrong They Were
Cheryl Ryan Chan, Person-Centered Practitioner
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My son Nicky spent 5 years in a hospital-based institution for severely behavioral children. They locked him behind a desk & put him in restraints any time he did anything they decided they didn't like. When it was time for him to transition into adult services, the agency said he was a monster who would never have any value to the world. I refused to believe them. After learning about SL - and being given a challenge by an adult agency director to have more faith in my son's potential - I embarked with that director to create a "hybrid" SL situation: SL with group home staff levels to provide what was necessary to be safe and access his community. 10 years later he & his provider Ben share a life of love, dignity & everything bachelors do that Mom doesn't need to know! Here's our story.
11:00AM-11:15AM EST Break
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11:15AM-12:15PM EST Concurrent Sessions
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1. Lifesharing and Quality of Life for People with Intellectual Disability
Guy Caruso, Western Coordinator, Institute on Disabilities at Temple University
Dr. Kathryn M. Burke, Assistant Professor of Research, Department of Teaching and Learning & Senior Research Associate, Institute on Disabilities at Temple University
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We will describe the emergence of lifesharing , when a person with intellectual disability lives with qualified adults who provide supports in their home, as a supported living option. We will share results of an analysis of quality of life reported by people with intellectual disability experiencing lifesharing in Pennsylvania, in comparison to other residential options. Lastly, we will discuss implications for future research and practice related to residential models and supports for people with intellectual disability. Objectives for the attendees (1) describe how lifesharing has evolved as a residential option for people with intellectual disability over time, (2) summarize research on lifesharing to date, and (3) identify resources to learn more about lifesharing.
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2. The Promise of a Home That Makes Sense
Josh Crupi, Community Living Specialist, Milparinka - Australia
If you would like to contact the presenter, please email nyaii@nyalliance.org and we can share their contact information.
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Milparinka works alongside people who have disabilities to move into homes of their own, with people they choose.
For many people the journey of discovering what 'Home' is, is exciting but frightening; because it's new and challenging. In the past many people have had limited living options and answers to their needs that were prescribed by bureaucrats and institutions - by people and places that used all of the right words as disguises for restrictive and life limiting options.
We learnt two key things in our relationships with people, the importance of people being in control of their own lives and the need for us to be authentic in our relationships. The story we have to tell is about authenticity, listening to people and the nitty gritty of finding a home that makes sense.
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3. Life Sharing Matching and Ongoing Support Options
Scott Schifsky, Person-Centered/Positive Supports Coordinator, Minnesota Department of Human Services
Laura Vogel, Lutheran Social Services
Heather Wright, Northstar Community Services
Sarah Tholen & Jennifer Walton, Accord
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Minnesota Department of Human Services (MN-DHS) has designed Life Sharing supports for interested people with disabilities and non-related families in Minnesota. Life Sharing will make it possible for a person with a disability to live with a non-related family and share experiences. This session will describe Minnesota's vision for the expansion of Life Sharing and demonstrate the enrollment process and roles and responsibilities of the State, County, and provider. Providers of Life Sharing will be present to share their stories of people who have successfully been matched to a Life Sharing family.
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4. Minnie and Her Parasol
Karey DeGenova, Senior Manager, Quality Assurance and Life Sharing, Burnaby Association for Community Inclusion
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This is the story of Minnie and her long-time caregiver Karey. Listen to the the ups and downs of their journey sharing lives and developing a deep bond over decades. Through this story, and a q&a to follow, we will look at several themes, including: How to promote resilient, flexible, and durable relationships between people with and without disabilities; What are the tensions between shared living and the systems that govern them and how might those tensions be addressed; What organizational values promote shared living and how can those values be protected; How might shared living offer ways to move beyond traditional systems; What more is possible; and How might governments support and promote shared living? Karey also oversees 165 Caregiving arrangements in BC.
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12:15PM-12:25PM EST Quick Break
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12:25PM-1:40PM EST
Closing Keynote Presentation: The Heart of the Matter - A Panel Conversation to Wrap Things Up
Aaron Johannes, Imagineacircle & Shelly Nessman, In the Company of Others
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Some stories, some ideas and some time to reflect.
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Let’s take advantage of the things we have heard and learned over the last two days to open our hearts and hear some stories. Shelley and Aaron will be joined by panelists who will share their experiences, thoughts and some of the wisdom that has been gained through intentionally sharing their lives with people.
“The purpose of a storyteller is not to tell you how to think, but to give you questions to think upon” ~Brandon Sanderson, fantasy and science fiction writer
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Closing Remarks & Adjournment
New York Alliance for Inclusion & Innovation & Citizen Network/CitizenFest
No Labels, No Walls
Festival 2022
Join the Festival after today's sessions!
In partnership with Citizen Network, registrants of the International Shared Living Gathering are encouraged to continue the conversations and networking by accessing the No Labels, No Walls Festival taking place throughout the Gathering on November 3 & 4.
