Podcast Episode 52. Rather than waiting until we have to act the better option is to start exploring what is already out there and start actively working towards creating solutions. This is exactly what this week’s podcast guest Mike Sweeney is doing.
Mike talks about the various projects that he has become involved in as he looks towards finding a community for his son Dustin to live in when he is ready for independent living.
Mike talks about how he has moved from thinking of housing as being the most important focus of his efforts to the realization that work would as he puts it “changes peoples perspective”.
He also discusses how the system in the USA is changing towards young people with additional needs being given more control over their own futures through what is known as self-direction. Mike also reminds us how important integration is in terms of ensuring that our young person with additional needs can have an independent future even when we are no longer around.
Although Mike’s journey is not a unique one, there is much to learn from the way he is navigating his way through the challenges. Listening to Mike’s story will help you as you plan ahead for your own son or daughter’s future independence.
Show Full Transcript
DEBRA: Welcome to episode 52 of the Journey Skills podcast. This week, I’m talking to Mike Sweeney who has a son with additional needs. Now if you listened to the 50th episode, you would have heard me talk about how my mindset has changed over time in terms of what’s most important when it comes to helping ensure my daughter gets the kind of independent life that I want her to have and most importantly, she wants to have. This actually interview was recorded before I recorded the 50th episode and in some ways, speaking to Mike, helped focus my thoughts around what was most important because Mike is further along the journey than I am.
Mike is one of those people who despite what they might say about themselves is actually inspirational and aspirational. Mike is doing what a lot of us are working towards doing and he’s actually at the stage of being inside the creation of long-term solutions for his son. Mike touches on many of the subjects we all think about including the idea of falling off the cliff once our young people finish full-time education. I’ve mentioned more than once that this is the reason that Journey Skills even exists because we knew that once our daughter finishes full-time education, as we saw it there wasn’t an awful lot out there. And as I’ve said before, I now realize that that’s not the case but it’s not always easy to find the solutions.
Mike also touches on some of the other topics that we all worry about like what happens after we’re gone and how do we make sure our young people are integrated into their local communities. I’m not going to take too much time summarizing what Mike says and what we talked about because I think you’re much better off listening to him than to me however I think there are some key themes in here and they are self-direction and integration.
We talked quite a bit about Carousel 51 which is Mike’s website and blog and I can certainly recommend you go and have a look and you’ll see the kind of amazing things that Mike is part of and there’s a link in the show notes to that website.
Mike has also mentioned a couple of other initiatives including CampHill and Fellowship Community and I put links in the show notes to those as well. There’s a full transcript on the website of my conversation with Mike. Just go to journeyskills.com, click on Podcast and then you’ll see episode 52 there.
What I loved about talking to Mike wasn’t just his obvious passion and enthusiasm, it was also his pragmatism. He talks about what is possible and I think he has come to these possibilities because he’s a realist, as well as an optimist. He reminds us again that the solutions are out there, but they will require our determination to find them. Anyway, let’s hear it from this week’s podcast guest, Mike Sweeney.
DEBRA: Today I’m talking to Mike Sweeney who’s based in New York and he’s a dad and also an advocate for young people with additional needs. Welcome, Mike!
MIKE: Thank you very much, Debra. I learned about your podcast through my very good friends who I work very closely with Alison Berkeley and Molly Sebastian at Invictus Enterprises in New York. It’s a really pioneering program and Alison I really respect, and she did your podcast and I listened to it and she was fabulous on it so I hope that I can be as good as her today for you. Thank you.
DEBRA: I’m sure you’ll be fine. Can you tell me more about your journey and your story?
MIKE: So, our older son is Dylan Sweeney, he’s 23 years old now and our younger son is Dustin Sweeney and he’s the reason why I’m on this call. Dustin is 21 years old, he’s low verbal and on the autism spectrum. He is really a wonderful kid and you know obviously, anybody who’s listening to this probably understands some of the challenges, so I don’t want to sugarcoat it, but he has also brought us into contact with an amazing amount of great people including the women from Invictus.
And the journey now is making a big twist here in the states because basically the school system is really baked into the puzzle in the way we’re set up here in the United States. I’m not going to say guaranteed but you have certain rights to “appropriate education” until the age of 21 for the special needs/autism population. So, it’s a matter of how you navigate that system. There are better schools and better teachers, but you navigate the system to the best of your ability and it’s pretty baked in. Now, as Dustin approaches 21, he will age out the school system in June of 2019 so that is what unfortunately is known as falling off the cliff here in the states because you go from a very established school system into the unknown and the unknown is not only just unknown it’s also drastically changing here in the United States.
I am in New York State and I am a housing navigator which is sort of an unofficial title at this point. I took a course where I really learned the history of basically developmental disabilities in the States and how it worked. In a nutshell, it’s really easy to sort of hit on what happened 40 years ago in a big case about Willowbrook Institution that was in Staten Island New York which is one of the boroughs of New York City. Basically, when Willowbrook was started, it was actually a great place. It started after the war when we really needed all hands-on-deck and we needed everybody working to rebuild America. Willowbrook was built as a way to take pressure off of parents so that they could both be working, and they didn’t have to worry so much about their child. The problem is you put together an institution and then ultimately 40 years of bureaucracy, a couple of budget cuts and next thing you know, you have just pretty much the worst thing in the world
But the point of the conversation is that so many things that I’m even trying to do today that I think are really great and pioneering, in 40 years, people might be like “Well that guy Sweeney was an idiot.” And you know, I think that it’s good to have that perspective from both sides of the equation. Number 1 is to understand how we got to this place and number 2 to understand that as smart and tricky as I think I might be, I’m going to get it wrong too. And the most powerful thing is if we can somehow find better mechanisms to help Dustin Sweeney’s get what he wants. So obviously our guys are impulsive at times so we have to figure out how to get around that but we really are starting to try to respond Dustin as best as we can and the way that’s done in New York is what is called Self-Direction Basically, self-direction is a huge movement where the focus is not on the institution and how the person fits into that institution or legacy program but now it’s person-person centered planning where Dustin Sweeney has a budget. Right now, it’s for an after-school budget but next year it will grow to a 24/7 budget and now it’s where do you best apply those funds for Dustin Sweeney’s future.
So, it’s a big shift because that means you put all the power in Dustin Sweeney hands. Dustin can’t really make those decisions. My wife and I make those decisions for him and ultimately then the next question is ‘What happens when we’re gone?’ But I don’t want to worry about that today. But it’s a huge shift because I want to be clear when you take money out of an institution which is what the system is doing, there’s going to be turf battles and all sorts of issues that. This, you know is happening not just in New York, it’s happening all over the States. This self-direction is a movement that is a huge piece of the way things are going here in the States.
DEBRA: When you talked about the budget, will he then be able to choose how to spend that on housing or training?
MIKE: It’s not like you just get a pile of money they send you. There are obvious limitations to everything. When I started my Carousel 51 blog, I was focused in on the housing part because living in New York City it’s expensive for anyone to live. So, I was really focused in on the housing side of it. As I went through, I start to realize that the job part is also important. I really believe a job is good for your psyche and just inner purpose of life to work so I started to shift my focus much more to the job side which is why we got involved with Invictus. Their focus in on job training for our population.
There’s a lot of other really interesting programs too. One I work with is run by a gentleman over New Jersey. He has two, low-functioning autistic sons. He is originally from Israel and he started a program with the Israeli Department of Defense where now 50-75 autistics are now reading basically satellite photography every morning to determine where troop movements are. Now, this is Israel, they’re not doing this to be nice. They’re doing this because this population is better at that job than so called “neurotypical”. If I’m reading those types of charts every morning, I’m going to get bored after about 3 or 4 days because it is not the way I’m wired. However, because his sons were low verbal, there were some communication issues and ultimately through a series of events he has ended up in New Jersey. Now he has two or three students in a program over there where they’re reading mammograms for doctors and they are I am told getting 66% higher yields than “neurotypical technicians”. So, what does that mean? It means our population’s saving lives and I’m really serious about that. I know like Dustin sees stuff that I don’t see, and he hears stuff that I don’t hear. So, they do have abilities, now do I think we are going to be able to do that with everyone in our population? Absolutely not, I don’t know if my son will be able to do that, but I do know he will be able to support someone who has those skills. And the second program is at the Yang-Tan Institute at Cornell University. Yang-Tan students (again mainly higher functioning autistics) are proving to be better employees at big companies like Chase, IBM and Deloitte. Now the reality is, these companies didn’t know how to find our population but when they finally figured that out, they weren’t doing this to be nice. They were doing it because our population is more loyal and when you get into the sort of work tasks that “neurotypicals”, call boring or grunt work our population loves it, because this is the way their brains work.
So again, the same conversation I don’t know if my son will be at that level. But in the States, there is legislation coming and or has been passed which will help ensure that corporate America will push down into the system and some of the outsourcing contracts for cleaning the building or for doing the gardening around the building will become available for people like Dustin Sweeney. I know he can pick up trash, I know he can cut lawns, he likes farm work so I know he can do that type of stuff.
So that’s a big piece of what I’ve been trying to focus in on in my Carousel 51 life. I’m looking at things from a ten-year perspective and my focus two years ago was around housing, where are we going to get houses. Now I really do believe that the jobs are going to be more important because that ultimately will change people’s perspectives. I even see it in the Invictus bakery when we sell dog biscuits for certain family members of mine. You know they get tired, when we hit them up for money. It’s like hey, how many emails am I going to get from Mike and Katie fundraising for their charity?” But when you sell them a dog biscuit, they get a tangible product, the dogs love it, and everybody’s happy.
DEBRA: You mentioned about housing I know you are more focused in on work but obviously, housing is then the next step. What are some of the challenges with housing that you have found?
MIKE: So, when you get to know me, I’m either pioneering or stupid. It depends on who you talk to. And my stupidity started 3 years ago when I was like alright, I’m going to solve this all by myself. I’m smarter than everybody else. I’m going to go solve this problem. So, my wife and I bought a townhouse up in Hudson New York, which is about 2 hours north from the city. It’s a beautiful little town and there’s a program there called Camphill Hudson, where there is a clubhouse in the middle of the town and about 15 to 18 people who go there for a morning meeting and then they go out in the community. So, we bought a house thinking we will get 4 or 5 people to live in our house and expand that program in a sort of partnership. But the reality was when Mike Sweeney called OPWDD (Office of People With Developmental Disabilities) which is our state agency that deals with our population they didn’t return my phone calls. I’m not taking the shot at them, I’m just giving you the reality. I’m one parent and they get a thousand phone calls so which ones do they pick, they the ones that they think are the priorities.
So, I regrouped, and I realized that I needed partners to start the housing programs and through our network here that was a mom that we work with really closely, and she got me involved in a project where the Archdiocese of New York, the Catholic church had a convent over in Staten Island. Now what we’re doing is (we’re 50% through the renovation on the convent) and we’ll have 10 apartments over there with 8 people with special needs/autism will live at that convent with 2 support workers. It’s not a program run by the church, they are simply the landlord.
So, our population will now integrate into Staten Island go into New York City to work and have a life. The difference was when I called OPWDD as Mike Sweeney, I didn’t get a return phone call but when Mike Sweeney calls as part of a group that is in a partnership with Cardinal Dolan, the Archbishop of New York City who lives on 5th Avenue, represents 1.3 million voters and every St. Patrick’s Day has a big parade down 5th Avenue in New York City that all the politicians come to, guess what? They returned our phone calls. What a shocker, Mike! You figured it out!
So, the point is we had a partner with people to get this done because that’s the realities of life. I think parents drive a lot of the innovation but at the end of the day, we’re going to need faith-based organizations and other organizations to support our population. One, to get in front of the right people and two, to help with what happens when we die, I do believe that the faith-based organizations are going to be very important in that conversation.
DEBRA: In terms of the housing is there a plan to expand that model and to work with other partners?
MIKE: The downside of it is it’s New York City so doing the renovations takes time. It’s all the regulatory stuff that you have to deal with. I don’t deal with it, we have a project manager who works for ArchCare which is actually an agency of the Archdiocese in New York. So, this guy knows what he’s doing but he has to deal with bureaucracy. So, for that program, our target is to move people in this time next year. And that will be complicated for sure because it’s new and it’s going to be a very driven by families. So, what we’re really trying to do it slow, so we do it right.
There are other models out there that have done similar things like one in Pittsburgh. The great thing about it now is that now we’re starting to talk to other faith-based organizations. We’re really now figuring out ways to partner with people and use the model. I’m also involved in another project up in Buckland County which is 40 minutes north of New York City. It’s called the Otto Specht School and Threefold Community. If you’re familiar with Rudolf Steiner and Waldorf Education they have Green Meadow which is a Waldorf School in Buckland County, then they started Otto Specht School 10 years ago for kids that didn’t fit in to Green Meadow. These families were part of their community and they wanted to support them so now there are about 40 students in the school. They have 200-acre campus and a farm there. They also have an elderly community which is really interesting because 150 elderly people live in that community called the Fellowship. So now, you have the chance for real integration which is what our population is moving towards integration more into society. It’s obviously very tricky to do, but here you actually have a situation where my 21-year-old son can absolutely push around one of the elderly people that might be in the wheelchair. Cognitively that person is still totally with us, they just have physical issues. So now you really have two people working as one that can support each other.
I’m really excited for that program. The reality is right now the Otto Specht the School is a day program, meaning kids go to school. So now we’re trying to turn it into a 21+ living and breathing program. Two families have purchased homes just right on the edge of the campus. One will be the male home and one will be the female home. So, the concept is the boys will live in the house and then work and do programs over at Otto Specht and also around the community too. Same with the women, there’s a woman’s house that a family have purchased for their daughter. There’s a family with a daughter and another family with the son. So that is again a really pioneering model where it creates true integration. It isn’t forced integration meaning I’m not sticking somebody in the middle of Manhattan, saying here’s the magic wand of integration, here’s the budget, you go figure it out, So I think the Otto Specht program is really interesting. It’s already integrated. We don’t have to do anything and it’s integrating the community that really supportive of each other and our population. Again, we’re just started to take applications for that program, so it’s still to be determined if it works so that’s the reality of where we are right now.
DEBRA: Do you think the housing project in Staten Island should be a similar integrated model?
MIKE: The good news is that is already set up in a parish in Staten Island. What is a parish, it’s a small community inside of a bigger community? So, the goal is to take 4 residents- special needs residents – from that parish to live in the convent, then 4 from Staten Island. If we don’t get enough people, (which I’m sure, we will) then we will go out to the larger New York City community.
But the point is that now, you already have some integration because not only there are 4 families that live in that parish, but also everybody in that parish knows the 4 residents. So, you continue the community that they already have and actually extend it out. And then, the hope is that that answers the question of alright, what happens when the parents die? In my situation, Dustin has a brother, but a lot of parents don’t have that option. And I also want to be clear, I don’t want to burden my other son with this. He’s in the United States Navy now, he’s off doing things, and he’s literally soon going to be traveling the world. Hopefully, my wife and I aren’t going anywhere in the near term. But I’m also trying to figure it out for him, not just for the single-child parents.
DEBRA: You talked about having a 10-year plan so if I was to say to you, what would the perfect scenario in 10 years? What do you hope will the kind of changes that will have happened?
MIKE: I’ll be selfish, and I will talk about Dustin, we live right in the middle of Manhattan. We have access to a lot of services and a lot of programs. We’re in a financial position where I can do this, I can be an advocate for our population. So, for the next 10 years, I see Dustin living with us and basically, he will graduate from school in June of 2019. I see him getting one main morning program, 5 days a week. And then in the afternoon, I see him doing a variety of activities and jobs. I don’t think he’s going to be able to (and I really want to be wrong on this) go to a 9-5 job every day. So anyway, I see 10 years figuring this out here in the city and if he does very well, we will figure out the housing for when Katie and I can’t support him any longer here in the city. If not, then yes, I do see him moving to a place like Otto Spechts or someplace like that where he can be in an integrated community that doesn’t have the stress of Manhattan and New York City.
DEBRA: What would you say as your top bit of advice for someone trying to do this, do what you’re doing which is help them become more independent– the work, the housing, all those things?
MIKE: So, the thing that I really try to do is focus in on my what I call My first hundred. I don’t want to solve the big puzzle, I’m not the right personality, but I do want to solve it for a hundred people. I want to develop a pioneering excellent model where they have a great life and I want others to see that, and then make it better or adapt it. The one thing I’m not trying to do with Carousel 51 is to solve everyone’s problems. It’s not that I don’t want them to be solved but I also know I’m not the right person to do that.
DEBRA: Mike, thank you so much for your time.
MIKE: Thank you.
DEBRA: Key takeaways? Look for partners or organizations that you can work with. Solve your own problems first. If you do that, you’ll create a template for others to follow.
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