ABOUT KERRY KAFAFIAN:
Kerry is a determined parent of a young adult son with intellectual and developmental disability. She knows hundreds of families facing the same challenges and knows how profoundly important the work is. Kerry is using her University of Michigan Business School degree in marketing to champion the innovative Lifesharing model of care. Kerry began working on a Lifesharing community for her son in 2005. Member of Michigan Legislative Disability Caucus, Autism Alliance of Michigan committee of Severe Autism, and National Council of Severe Autism Michigan Chapter. She was President of Growing Hope’s Board from 2018-2021. When not working on Many Hands, you can find her in the garden.
NOTE- her grandfather was the first Sociology professor at Michigan State Normal College (EMU).
RESOURCES:
Many Hands Lifesharing Community
Many Hands Lifesharing Community on Facebook
Many Hands Lifesharing Community on YouTube
Many Hands Lifesharing Community on LinkedIn
TRANSCRIPTION:
David Fair: This is 89.1 WEMU, and today, we bring you a story of love, of inspiration, and hard work. It comes in the form of a mother's love and her desire to help build the best life possible for her son who has developmental and intellectual disability. I'm David Fair, and welcome to this week's edition of Washtenaw United. More than 20 years ago, Kerry Kafafian launched her effort to build community for her son. That has resulted in the Many Hands Lifesharing Community. The nonprofit broke ground on a 94-acre campus off Baker Road in Dexter last September, and today, we're going to learn about how this particular community is growing and will continue to evolve. Kerry, thank you so much for making time to talk with us! I appreciate it!
Kerry Kafafian: Oh, I'm very glad to share the issues and the story that our families are facing!
David Fair: Well, the story starts with your son, Kevin. How early were you aware that Kevin was going to have some special needs?
Kerry Kafafian: He started having seizures when he was around two, but it was really when he was eight years old. I mean, he has bright red hair and a delightful child, but I realized he wasn't going to continue developing the skills that people need to be able to live independently. And so, we're looking at 24-hour care for the rest of his life.
David Fair: How quickly did you become aware after determining that it would be difficult to find the kind of opportunity and circumstances that you know he wants and deserves?
Kerry Kafafian: Well, I started looking around at what the options were because there's hundreds, if not thousands, of parents--I know hundreds right here in Washtenaw County and thousands throughout the state--that we face the very scary, terrifying thought that who will care for my child when I no longer can. And looking at it that way, I was very discouraged on what I saw around even in other states, until I came across something called Camp Hill in a life-sharing community, and that gave me hope.
David Fair: And that was over in Pennsylvania. And when you say it gave you hope, did both you and Kevin go and pay a visit and stay a while, or did you just go and observe and bring back the knowledge?
Kerry Kafafian: So, our whole family went. So, we all went out there, and it was just amazing the way they have the caregivers live in the home with those that they're providing care. It's just they're sharing a life together, and it really makes it feel like a family home. And that's what I wanted for my son.
David Fair: And is that what defines a life-sharing community that the caregivers and the people they're caring for are all in one space?
Kerry Kafafian: Yes. And I think of it a little bit as a hybrid, because if you have a home with four people, if you have a home of four people who need this level of care, in a week, that takes 12 staff members. And so, we're going to look to have six of those 12 live in the homes.
David Fair: Would you define that as a life-changing experience?
Kerry Kafafian: Oh, most definitely! When I went out there and I realized that this is what I wanted for my...I still thought of him as my baby, my child, to be able to experience. But there's nothing like that in our area. And so, that's when I said, "Well, if this is what he needs, we need to build it." And then the idea is as we build this, it can be an example, a pilot project, for other families in other communities in Lansing or Oakland County or even Grand Rapids to replicate.
David Fair: To germinate the idea and bring it to fruition in roughly, what, two decades to get to this place where we are today, what keeps you moving forward and inspired, despite the obstacles that stand before you?
Kerry Kafafian: I'm a mother. And it's a mother's love, and we all want what is best for our children. And then, as I meet, like I said, the hundreds of other families right here in our community that are facing the same issues, the same fears, and then get to know their delightful children, we all want to see this happen. It needs to happen.
David Fair: Our Washtenaw United conversation with Kerry Kafafian continues on 89.1 WEMU. Kerry is the Founder and Executive Director of the Many Hands Lifesharing Community. And having a vision is one thing, incorporating another, which happened in 2019. But then, last fall, you were able to get a 94-acre campus. How did that come about and help you move even more forward in this goal and this mission?
Kerry Kafafian: We live in a very generous community. It was a local family foundation who recognized the need that I've been describing and said, "We'll help you get the land." And so, they did a matching gift, and we were able to purchase the land and then have funds left over to continue developing it. The money we've raised so far, most of it has come within just five miles of our property, and we're set up to eventually provide care for people outside of Washtenaw County, so it really is a statewide initiative. But our local community has really stepped forward to support this. It's been wonderful to see!
David Fair: And this will be the first such life-sharing community in the state of Michigan, if I'm correct.
Kerry Kafafian: Yes. And so, we're looking for this to be a pilot, and we're looking to share how we develop it. And so, that we can then help others duplicate it.
David Fair: What is this campus going to look like?
Kerry Kafafian: Campus is a really good way of describing it. So, we're going to have the residence homes will be clustered more towards the back of the property next to a 100-acre oak forest. And then, towards the front is where we have more activities: a barn, the therapeutic animals that people can come and interact, and for the wider community, they can come in and have activities, but those animals give people who are living there a chance to care for another living creature, which is very powerful. We'll also have a cafe, but it's not a cafe in the normal sense. We're not selling the drinks and the baked goods. They're available, but it's more of a meeting space. And then, of course, we're going to have a very large craft house because creativity is wonderful. And we've already started our organic plus. It's a biodynamic farm, and that we are planting potatoes on Saturdays. So, we're very excited about those activities. And there will eventually also be a community center, which can be used as an indoor space for shows or music. We want to connect with everybody in this area and have things that people can come into during the day. Even if they don't live here, we want to be sure that this is an asset that they can utilize.
David Fair: The developing and intellectually disabled are often overlooked in our bureaucracy of government change. I'm curious as to whether you're going to get state or federal support to provide for this new and innovative system.
Kerry Kafafian: Well, right now, we do have a request on the state budget. We're waiting to hear on that and with plans to eventually work with the federal government. Once the buildings are constructed, the ongoing operational funds are already in place, so we're in surprisingly good shape for that. It's just raising the money to build the buildings, so that we can show proof of concept, show how this works. And people can then come and visit and be inspired.
David Fair: And when inspired, you hope that it will spawn other life-sharing communities around the state of Michigan. I'm curious. How would you suggest that we start shifting attitudes around the state in how we care for the developmentally and intellectually disabled and kind of shift our perspective in that direction?
Kerry Kafafian: I think the fact that people are waking up to just how high the need is for direct care professionals, most people immediately think of in the senior community. But as they become aware of that shortage and unfortunately the poverty wages that these people who do very high-skilled, life-and-death work are treated at fast food rates in their pay, it doesn't make sense. And so, when you look at the disability community, we're facing the same challenges around staffing. So, I realized, about five years ago, that if we approach this, Many Hands approaches it as how we can take the best care possible of our staff, I don't need to worry my son will be well cared for. And that's our goal, and we're able to do that looking at things like housing and food and other continuing education.
David Fair: It has been a long journey to this point. And yet, I'm sure it feels as though it's just getting underway.
Kerry Kafafian: I'm so excited! And once we have our first building, we'll be able to do a ribbon cutting. And really, like I said, we want to be a place that people can come to and feel accepted that they belong. We need more of those communities that are very open and welcoming to everyone.
David Fair: Well, thank you for sharing the story to this point, Kerry! And we'll look forward to how the story grows in the years to come!
Kerry Kafafian: Thank you!
David Fair: That is Kerry Kafafian, Founder and Executive Director of the Many Hands Lifesharing Community as it begins building bigger community with its 94-acre campus in Dexter. For more information, pay a visit to our website at WEMU.org. Washtenaw United is produced in partnership with the United Way for Southeastern Michigan. I'm David Fair, and this is your community NPR station 89.1 WEMU, Ypsilanti.
UWSEM STATEMENT ON TOPIC:
There are more than 55,000 people with intellectual and developmental disabilities (IDD), including severe autism, living in Michigan. At least 8,000 of these adults require 24/7 care from family or dedicated staff. Unfortunately, the scarcity of residential options and low wages for caregivers has led to a crisis, forcing many families to provide this intensive support themselves. This situation places a particularly heavy burden on aging parents, who worry about their children’s future care as they begin to experience health challenges of their own.
Given these realities, parents of people with IDD face a frightening question: who will care for my child when I am no longer able?
WEMU has partnered with the United Way for Southeastern Michigan to explore the people, organizations, and institutions creating opportunity and equity in our area. And, as part of this ongoing series, you’ll also hear from the people benefiting and growing from the investments being made in the areas of our community where there are gaps in available services. It is a community voice. It is 'Washtenaw United.'
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