The New York Alliance for Inclusion and Innovation (NY Alliance) and its American and international partners are excited to announce a brand-new event for 2022: Home is the Heart of Shared Living: An International Gathering. The Gathering will take place virtually via Zoom.
Event Dates & Times:
Thursday, November 3rd - 10:00AM EST - 2:15PM EST
Friday, November 4th - 10:00AM EST - 1:40PM EST
IMPORTANT NOTE: The registration form linked to the REGISTER buttons will only accept US registrations.
To register and pay with a currency other than US dollars, click here. Your payment will be processed shortly after submission.
Upon registering, you will receive a confirmation email with a link to the event landing page. The event landing page is where you will access all information needed to join the event on November 3 and 4, 2022.
What is Shared Living?
Shared living arrangements, in which persons with and without disabilities live together and share their lives, have emerged as an alternative to highly controlled and regulated congregate living models.
Experience shows that shared living can disrupt hierarchical relationships and promote authentic relationships between people with and without disabilities. It redefines staff:client boundaries that can promote inequality and frequently offers more stable, predictable, and spontaneous environments than congregate models. It can increase the control people with disabilities have over their lives and decrease the complexity that comes with congregate settings.
The NY Alliance and its international partners want to spread the news about shared living, its potential benefits and its contrast with more traditional settings.
Stay up-to-date!
If you'd like to receive an email when registration is open and the agenda is available, click here to join our Gathering e-list.
The NY Alliance is a statewide membership association representing nearly 150 not-for-profit provider agencies who deliver supports and services to people with disabilities. The association is a catalyst for positive change and a leading resource for New York’s disabilities community.
About the Partners
Schedule of Sessions
The times listed below and throughout the event landing pages are US Eastern Standard Time (EST).
Please make sure to convert if you are in a different timezone.
Thursday, November 3, 2022
10:00am EST - 2:15pm EST
10:00AM-11:15AM EST
Opening Remarks
New York Alliance for Inclusion & Innovation & Citizen Network/CitizenFest
Keynote Panel Presentation
Alex Fox & Representatives from Shared Lives Plus – United Kingdom
11:15AM-11:30AM EST
Break
11:30AM-12:30PM EST
Concurrent Sessions
1. Living the Life You Want
Fionn & Jonathan Angus, Fionnathan Productions - Ireland
Fionn & Jonathan, son and father, are accidental activists. We even sued the Irish government in High Court, the first in Ire with cognitive impairment to control his own support funding. Jonathan applied for the job, saying he'd give 24/7. (Hiring family can be a shorter path to goals. International travel would be impossible with purely transactional support.) Our social enterprise hired Fionn, with another grant paying 1/2 his wages. His job includes studying; music & visual arts; teaching both schoolchildren & college students. Even apartment hunting was 'on the clock' work. Convincing local authorities that supported independence requires a 2 bedroom place for one citizen was difficult, but we prevailed. Fionn is a great neighbor, graduating from self- to community-advocate.
2. Peer 2 Peer: Shared Living Providers’ Peer Support Network Successes
Joshua C. Smith, Executive Director, Green Mountain Support Services
5 years ago, Green Mountain Support Services started a Peer Support Network, with psychologist who created a similar program for Doctors Without Borders.
The primary purpose of the Peer 2 Peer is to offer PEER support and information to each colleague who may wish to talk with someone who has had similar work experience and is able to relate to his or her experiences. The emphasis for the P2P member is on listening. It is also the role of the P2P member to give information or reminders about additional support systems that are available to assist with work assignments and a good balance of self-care.
The Peer 2 Peer (P2P) is the non-clinical support system provided by trained SLPs for their peers. P2P members offer listening, support and information for others regarding their responsibilities and assignments. An essential part of the system is that it be composed of folks who have no interests or motivations that would conflict with their abilities to give support to a colleague.
We have seen that this program was immensely helpful for this solitary workforce during COVID and has only strengthened the professionalism and support for our Shared Living Providers.
3. Brooklyn St. An Intentional Community
George Fleischner, President/CEO, Nonotuck Resource Associates, Inc.
Mary Lou Accetta
Mary Lou Accetta and George H Fleischner will tell the story of an Intentional Community in North Adams Ma. The goal of Brooklyn Street Neighbors is to create a community that combines the best aspects of our childhood with insights from more recent decades. For us, this means a neighborhood where children can play safely, neighbors can count on each other, families live separately but share many resources, that promotes healthy and sustainable living, and includes a common space for regular community events. Mary Lou and George will speak to the development of BSN and the natural yet intentional integration of people without disabilities with people with disabilities.
4. Life Sharing and Social Role Valorization (SRV): Achieving a Meaningful Life
Barbara Dyer, Director of Quality & Performance Improvement, Mainstay Life Services
Social Role Valorization (SRV) theory developed by Dr. Wolf Wolfensberger provides a framework for us to envision a life where people with disabilities experience freedom, dignity, and ultimately achieve the good things in life we all enjoy. The good things in life typically include meaningful community contributions, belonging & being part of something, having freely given relationships, being held in high regard, and achieving success. Good things come to people when they are seen as holding valued roles within their communities. Roles like neighbor, volunteer, family member, etc., as well as the good things listed above, are outcomes we want to result from shared living. We will discuss the application of SRV in Life Sharing to help those we support achieve a full, rich meaningful life.
12:30PM-1:15PM EST
Break including Meet-Up to Network!
Join us for Songs and Stories with Peter Leidy!
Peter Leidy is a consultant, teacher, and singer/songwriter with a background in support and inclusion for people with disabilities. He works with families and organizations throughout the US and abroad and frequently speaks at conferences, using humor and music in interactive sessions. Among his passions are inclusion for ALL people, improving workplace communication, building relationships, re-thinking “challenging behavior”, employee support and retention, writing personalized songs, and practicing and teaching mindfulness and stress-reduction. Peter is an associate with A Centre for Conscious Care. He also officiates weddings and other ceremonies. Peter lives in Madison, Wisconsin with his partner of 39 years, Betsy.
1:15PM-2:15PM EST
Concurrent Sessions
1. Shared Living in Kentucky: Lessons learned about crafting supportive ally relationships
Hope Leet Dittmeier, Executive Director, Mattingly Edge
Mattingly Edge has assisted numerous people with disabilities to live in homes of their own with the support of a live-in or neighboring ally. Each and every situation was facilitated in a similar person-centered manner; however, each has differing characteristics. Much has been learned about the roles of all parties involved, the process of designing and facilitating supportive agreements, financing alternatives, and the factors that are most vital to success. Our presentation will include two to three people we support and their supportive allies telling their stories and family members sharing their perspective, followed by a summary of what we have learned as an organization. We will leave plenty of time for questions.
2. The Complex Beauty of Sharing Life
Patti Scott, CEO, Neighbours Inc and International
In many ways, Tyrone was the heart of his community and neighborhood. At 13 he became homeless for a period of time, and then for more than 20 years lived in a variety of institutions, nursing homes, and foster care placements. In his late 30s, Tyrone followed his vision and moved back to the community he left as a teen. There he became a homeowner, a neighbor, a student, an employer, a citizen, and an incredible connector. Tyrone's life experiences became his deep source of compassion. Over the last 10 years of his life he shared his home and life with someone, growing deep bonds as friends and family. The life they shared changed him, her, and her family - who also became Tyrone's family. This session will honor stories from Tyrone's complex commitment to share his life and home.
3. FamilyHome – How might shared living offer ways to move beyond traditional systems? What more is possible?
Terral McBay, FamilyHome/Supported Independent Living Coordinator, Extend-A-Family Waterloo Region - Canada
Founded on the values of citizenship, belonging, friendship and family, is a shared living model that provides a life many never knew, some lost, or others may be revisiting. FamilyHome is a program where adults with developmental disabilities live with and share life with a family in their community. FamilyHome is an opportunity to build a long standing relationship of support and a network of people to belong to. It creates belonging for those supported. It affords the opportunity to grow and expand a current family. It also provides government ministries an affordable option for residential support. Participants will hear stories of life in FamilyHome at Extend-A-Family Waterloo Region. This session will share some amazing possibilities for creative and innovative relationships.
4. Shared Living Personal Experience on Pros and Cons of this Model and How it can Sometimes Hinder Self-Determination and Dignity of Risk
Nicole LeBlanc, Disability Rights Activist, Consultant, PAL Group Coordinator, HSRI TASH
In this session I will share my personal experience on being in 2 shared living arrangements where one was a negative experience and the other a positive one. I will talk about how this model can be a barrier supporting people with disabilities to move out on their own. This session will cover the themes of a good match vs a bad match. Ideas for building skills for independence will be included. Share how this model can be a barrier when it comes to dignity of risk. This session will cover ideas and importance of training SLP's on self-advocacy dignity of risk, self-determination, ableism, and much more.
Friday, November 4, 2022
10:00am EST - 1:40pm EST
10:00AM-11:00AM EST
Concurrent Sessions
1. World Cafe: What Have We Learned About Shared Lives? A time to ask emerging questions.
Aaron Johannes, Imagineacircle & Shelly Nessman, In the Company of Others
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!
Time to reflect, synthesize and celebrate “future forming ideas” (Ken Gergen)
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
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.
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
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
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
11:15AM-12:15PM EST
Concurrent Sessions
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
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.
2. The Promise of a Home That Makes Sense
Josh Crupi, Community Living Specialist, Milparinka - Australia
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.
3. Life Sharing Matching and Ongoing Support Options
Scott Schifsky, Person-Centered/Positive Supports Coordinator, Minnesota Department of Human Services
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.
4. Minnie and Her Parasol
Karey DeGenova, Senior Manager, Quality Assurance and Life Sharing, Burnaby Association for Community Inclusion
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.
12:15PM-12:25PM EST
Quick Break
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
Some stories, some ideas and some time to reflect.
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
Closing Remarks & Adjournment
New York Alliance for Inclusion & Innovation & Citizen Network/CitizenFest
No Labels, No Walls
CitizenFest 2022
Presented by Citizen Network
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.
No Labels, No Walls CitizenFest 2022 provides people all over the world the opportunity to share their actions that focus on transformation and how we can change the world around us. To submit a video recording of your action, click here.
