Housing and Neurodiversity with Carolyn Naifeh | EXPLORING DIFFERENT BRAINS Episode 19
In this episode, Hackie Reitman, M.D. speaks with Carolyn Naifeh, Co-Founder and Executive Director of the Nashville IDD Housing Group. Carolyn discusses the challenges of independent living for the intellectually disabled, the concern parents have over their uniquely abled children’s futures, and the importance for everyone to be exposed to neurodiversity.
Visit the Nashville IDD Housing Group’s crowd funding page:
www.razoo.com/NIDDHG
For more aboutthe Nashville IDD Housing Group and Carolyn’s work, visit:
www.nashvilleiddhousing.org
facebook.com/nashvilleiddhousing
www.twitter.com/iddhousing
E-mail: Carolyn.Naifeh@nashvilleiddhousing.org
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HACKIE REITMAN, M.D. (HR):
Hi, I’m Dr. Hackie Reitman and welcome to another episode of Exploring Different brains. Today we’re speaking with my new friend from down in Nashville, Carolyn Naifeh, the co-founder and executive director of the Nashville IDD Housing Group. Hello, Carolyn!
CAROLYN NAIFEH (CN):
Hi, Hackie! Thank you so much for having me on your show.
HR:
Well thank you for being with us. Why don’t you introduce yourself to our Different Brains crowd here?
CN:
Do you want my name or do you want my work? I think you want our work.
HR:
I want the whole thing, I want your name, what you do–introduce yourself.
CN:
We started–I started my work here in Nashville three years ago when I moved to open the Regional Office of the Pujols Family Foundation, Albert Pujols the baseball player, big hitter, has a daughter with Down syndrome. And his foundation works with Down Syndrome and with the poor in the Dominican Republic. So my work here focused on Down syndrome and one of my instructions was to see if there were any needs in the community that were not being met by the other non-profits. So in addition to our regular programming, I met with all of the other non-profits and learned about what they were doing, and the one need not being met by any of them was in the provision of housing for people over the age of 22. So I started with a friend, a divinity school professor here at Vanderbilt, we were both very concerned about this lack of housing that was being made available to people from ordinary families. And we started a grass roots group to see, was there any possible way that we could possibly make a dent in this problem? And we started with 20 families and it just kind of mushroomed from there. About a year ago, I parted ways with the foundation because the work had really grown past its mandate. The work was for Down syndrome for the foundation and our work has never been in the housing group specifically for Down syndrome, it’s been for all intellectual and/or developmental disabilities. So there was not a good match anymore, so they let me take that part of the work with me and we started a new 501(c)(3) last summer in June.
HR:
Now tell us some of the different types of neurodiversity and handicaps and challenges and unique abilities of the people who live in your developments there?
CN:
The first one that’s fun to talk about today is a young man named Leo. Leo is 24, he is autistic and he has Obsessive Compulsive disorder. When we met him he was working as a bag-boy at Harris Teeter. He hated the work, and he started living with us and we matched him up with a job coach from Best Buddies, which has recently started an employment program, and the job coach worked with him very hard; Leo really put in the time, and he got an interview with The Home Depot. And The Home Depot hired him, competitively, and he had a part-time job, and his job was to help walk stuff to people’s cars and to tie stuff onto the cars–he loved it, he did really well with this work, really got along with his colleagues and his supervisor started to have him train other workers. And he was thriving. He was profiled on Fox News 17 here in Nashville on St. Patrick’s Day, and they told his story and they said how he had been given a Home reward, which Home Depot gives to its associates when they do well and represent the company’s values. What I just learned is that Atlanta, the corporate executives were so happy with and so happy with interview that he did, that they presented him in person the corporate executives with a second Home reward. Apparently, I think, if you get three of them you get a promotion. So in a short time, his confidence has gone through the ceiling, he is so proud of himself, his personal ambition to do a job where there was room for advancement–that was really his goal. He achieved that, and he is doing great. And he has autism and he has obsessive compulsive disorder. That’s pretty good.
HR:
That is great. What a great and inspiring story. One thing I liked about what you’re doing there at the housing at the Nashville IDD Housing group, is you’re bringing together people to help each other out. Could you expand on that a little bit? Who’s in the communities?
CN:
Absolutely. My colleague, the divinity school professor, his name is Yako Hammit, and Yako, when he was a professor at western theological seminary in Holland, Michigan, because he was concerned about these families and what they do with their loved ones when they pass away, what’s available, nothing–he raised, with some colleagues, some money, and they built a big house where they house seminarians and eight young men with intellectual disabilities. And the ratio is three seminarians to each person with a disability, and they accommodate, therefore, 4 times 8–32 people, and that is ongoing now. A colleague that he did that with there has gone to duke and is doing a similar program there, and then here we started our program and we place–in or first house we have eight students–six divinity students from Vanderbilt and then a young married couple that’s involved with the Social Justice Program at Belmont University. And then we have three young adults, they happen to be all men, and they happen to all be on the autism spectrum disorder, that’s where their challenges are–so we have a ratio of almost three to one. And the partner that we are working with does the housing and we do everything else. The other two young men, besides Leo, one is in a post-secondary program at Lipscomb University, he works on the grounds crew at Lipscomb, he volunteers at his church, and then what he, himself is most proud of, is he is a captain with the Civil Air Patrol, which is the Air Force Civil Auxiliary Group here in Nashville. And then Steven, he works at–he attended the Next-Steps Program here at Vanderbilt, their post-secondary program. He works at the Vanderbilt Kennedy Center as a research analyst; he volunteers with Saddle Up, a therapeutic horseback riding place for people with disabilities, and he also volunteers with Gigi’s Playhouse, which is a place for folks with Down syndrome, different activities. And he is just totally involved in the community.
So all three of them work–that’s a requirement to live with us–and then they interact with the students on a daily basis. They have a communal supper once a week–Alex, one of the divinity school students, and Leo, play chess two or three times a week. Leo is much better than Alex. Leo wanted to go to some kind of car show in Chattanooga this weekend called Bug-A-Palooza and Alex was going to take him because Leo had never driven that far so the relationships are just very sweet. They grow organically and they help each other, and that is the exciting part about this program–is that the students help their friends, whether that’s cooking or helping tutor with GED training, or whatever the need might be, but the friends work with the students and totally transform their lives. They teach the students how to communicate better, they teach the students how to be patient, they teach the students how to live in the present–they teach them how to function with a disability in our society and how you handle that and how you can thrive despite that. So they really teach the students what you can do as opposed to what you can’t do. The Tennessee End, a local paper here, is going to be doing a feature on us in about a month and they interview most of the students and most of the friends for this piece that they’re doing, and one of the women students was asked by the reported, “What is it that you do for the friends here? Have you developed any special relationships–what do you do?” And she thought about it, she is a PhD candidate and she said, “Well, you know, I don’t really think that’s the right question. I think really the right question for me would be is what do the friends do for me?” And she said–I’m frequently on campus with my studies, late, and I come home late–she said, “The first person I see is Steven.” And she said “he welcomes me, he’s happy to see me, and then he makes sure I get to my door safely. He wants to make sure that I’m safe and secure.” And she said, “I feel safe and secure with him. I feel very protected; I don’t feel unsafe in our neighborhood, but having him do that for me really makes me feel comfortable,” she said, “that’s what he does for me.”
HR:
Very well said. You know, you’re talking about a triad of things here. We have the housing, we have the employment and we have the friendship or socialization all wrapped into one.
CN:
Yes.
HR:
And what caught my eye in one of the emails, when you and I were going back and forth earlier, Carolyn, was you said, “We also require our friends to work.” We don’t specify the number of hours, nor whether it’s for pay or volunteering, but they must have a job or responsibility of some sort outside of the home. And that last part really resonates–outside of the home. Why don’t you expand upon that?
CN:
If they could, they would all have computer jobs. I mean it seems like every person I’ve ever met, especially if they are on the autism spectrum, love the computer–and if they can work out of their house and telecommute and never have to interact with another person, I think most of them, you know, could die happy. But it sure doesn’t let everybody else benefit from them.
HR:
Now how long has this been going on now, in Nashville?
CN:
Here in Nashville people started moving in last June. We were fully populated by September. There was one young man that we were trying to work with and it didn’t work. We were holding an apartment for him and he has autism, he has some mental health challenges, he is also a transitioning transgender, and he just either had difficulty finding a job or wasn’t as into finding a job as he needed to be, but he could not find a job of any sort–volunteering–it didn’t matter how many hours, we–I’m not that familiar with transgender issues, so I had to get smart in a hurry and I got rid of my baggage pretty quickly. And there is a woman who got fired from one of the universities here, she was a soccer coach. She got fired when she came out as a lesbian and she started a gay/lesbian/bisexual/transgender Chamber of Commerce, and they have a Chamber for the LGBT community, and I didn’t know that. And they hooked me up. I had him go to a job fair, she introduced me to a man that works with Amazon with the big fulfillment center here. He used to be a nun. This man did, and he held my hand, got me smart about transgender, told me about the employers that were sympathetic to the people that were walking through this and we still couldn’t make it work. So after four months, we said we will leave you on a waiting list but we are not going to wait any longer for this facility. So he is at the top of the list for the second house. He is not yet employed, but if he gets a job by the time we open the second one in August, he will be able to live there.
HR:
You know, I once did a webinar for the AANE, the Asperger’s/Autism Network, originally in New England, they’ve expanded it, and I believe it went to like eight countries and 36 states, but what was amazing to me, out of my ignorance I guess, was how many of the participants, relatively speaking, were–had transgender issues in the Asperger’s/Autism community. And I’m not aware of any studies on the occurrence of this, but it’s not something I hear about rarely, you know?
CN:
There’s a woman in New Mexico who specializes in intellectual disability and sexuality, and I’ve spent way more time on that topic than I would have ever though that I’d be spending, but I have run into transgender, I have run into gay and I have run into bisexual, so it’s out there. But the big problem is because of some of the challenges that they have in communicating or whatever the challenge might be, they don’t have as many options open to develop healthy relationships. And that’s something that were working on. I’m also working with a professor at Vanderbilt to see if we can’t come up with a support group for people that fit in this category so that they can meet other people like themselves, they can go out and have some social outings where nobody’s looking at them funny, and they can get support. And it can be for them, it could be for their friends and families. But they need to have some healthy outlets where they can develop some healthy relationships, otherwise they could get into trouble on the internet. We’ve had to also get smart on how to put controls on people’s desktops, laptops and phones so that they don’t get into trouble or advertise on craigslist for anonymous partners–that’s actually one of the big challenges for me, is getting smarter on people with autism because so many of them are so gifted that they are able to get into way more trouble than people who have–who are more challenged intellectually. So that’s been something I’ve had to get accustomed to, is that this–the more able you are, the more trouble you can get into.
HR:
Now let’s shift gears a little bit. Your doing so many wonderful things down there in Nashville. We’re speaking with Carolyn Naifeh, who is the–has the Nashville IDD Housing Group, and I wanted to shift gears because I know it takes a lot of money to run these things. And tell us about a fundraiser you have going on.
CN:
Oh, we have had the Dickens of a time raising money. We had thought our families would be more invested financially in our work and in the short-term, and for sustainability in the long-term. That’s going to have to come about. But as a new non-profit, we are ineligible for a lot of grant money that require three years of financial statements. We had not yet been a 501(c)(3) a year. So we don’t even have one 990 which is something that a non-profit has to have when they seek money. So we started a crowd-funding campaign and it is going slow as molasses, and we definitely need help because if we don’t raise some money, were not going to be able to continue at the same pace, or hold hands with our families in the ways that we’re able to now, to work together to make it a success. So we have a campaign on Razoo which is one of the crowdfunding campaign platforms and our address for Razoo is www.Razoo.com/NIDDHG or you can just type in Nashville IDD Housing and you’ll get the same place. We have been so fortunate to have friends record a bunch of public service announcements for us Ed Asner, the wonderful actor from the Mary Tyler Moore Show, the Lou Grant show, seven-time Emmy winner–he has a son and a grandson with autism who’s really involved in acting, especially in southern California, he was really gracious and taped one.
Esai Morales, big actor, he was in La Bamba and NYPD Blue, all different kinds of television shows. Criminal Minds was his last season. He did one a Comedian named Brad Spine. They have a new one this week from Denise Grace, Denise is one of the foremost Sopranos in the world, she’s doing one–this is an issue that everybody is concerned about. Because you either have a loved one who has the disability , or you’re just a human being who cares and help your fellow humans out that have a problem you were just fortunate enough not to have to have. And it does take–anybody that’s involved in this type of work knows it takes all of us working together to affect change, if were going to do it more than for one person. You, in your work, it’s not just you–it’s you, its Charlie, its Joseph, it’s all kinds of people working together to affect change and that’s what we’re doing here but we need people’s help in the broader community to help us go here. The motivation for people we think to help us here in Nashville, even if they don’t live here, is that our model can be replicated in other cities and that’s the exciting part. SO if there’s anybody out there, that in their own city wants to do a friendship house, wants to put friends alongside divinity school or synagogue school–those are usually the ones that are most advantageous to work with because when they go out after they finish their studies and they work with a congregation, they’re able to embrace, fully, everyone in their congregation. So it really is a change-agent, long-term. So this campaign were running, were hoping that people can support–whether people are in Nashville, here in middle Tennessee, or wherever they might be in country.
HR:
You know, if I’m a neurodiverse individual and I don’t live in Nashville and I need housing assistance, what advice would you have for me, not in Nashville?
CN:
Not in Nashville? I’d have to know what the city is. Once I knew the city, there’s usually a handful of non-profits that work with disability, and if you talk to the executive director of those organizations, if you get to one or two of the right ones, you can identify the major players in the city. Those major players are going to know who works with affordable housing. And if there is anybody in the city who provides affordable housing for people with disabilities, some cities are amazing, a lot of cities–especially, I mean if I had an intellectual disability, I would want to live in California. California has amazing benefits–Tennessee, not so much. It really varies from state-to-state, from city-to-city, so the best place to start is to work with the other non-profit leaders in town to identify what’s what so you can get a lay sense of landscape. And for setting up a friendship house, there really does need to be a university that gives you–especially–it has to have graduate students, undergraduates are too young, but there have to be graduate students that provide you with a pipeline ongoing that’s not going to disappear any time soon, so it gives you longevity.
HR:
What do you offer the graduate student who might move into your complex?
CN:
Make it affordable housing. Students are just as poor as people with intellectual disabilities, I mean none of them are walking rich people, and you have to qualify, depending upon the funding of the physical building, you have to be at 80% or lower of medium income or sometimes as low as 60 or lower of medium income. For our current friendship house, that means you have to make at least $22,000 to qualify, but you may not make more than $26,800. If you make less than $22,000 you can still live there, but you have to have somebody co-sign the lease, and usually the parents are willing to do that. For our next house, we were just talking to our partners this morning and we don’t have the exact figure yet but I can tell you that one of the divinity school students right this minute is renting one room in a house nearby where the next house will be, for $800 a month, and our rent will likely be $560. So big difference. You get your own private apartment and that’s $560 and this fellow’s paying $800 for one room. That’s a big incentive.
HR:
How many people do you serve in your housing at this time?
CN:
Right now we have, in our first house, eight students and three friends. In our second house it’s going to be about double the size; well have space for 20 people. We don’t know exactly how that will balance out. It might be 14 students and six friends, it might be 13 and seven, it will really depend on what the needs are of the friends so well have to see who ends up being there and then figure out how that parcels out. We have 38 people on our waiting list right now, and were working with about 285 families.
HR:
Wow. That’s a lot of families. Now to your knowledge, how many of these initiatives are going on around the country?
CN:
Not as many as there need to be. That sounds like a flippant answer, I don’t mean it flippantly, I don’t have a clue–we are the only ones doing this in middle Tennessee. You would think that with our population, there would be more. There is no exact similar group to what we’re doing and the services that we provide but some organizations provide this service but housing is usually something that just doesn’t get the attention that it needs, and unless you’re extremely rich or extremely poor, if you’re anybody in the middle, which is most of us, you’re on your own. And a lot of people with IDDs cannot live fully, independently. They need some support. But they need friendships and they need jobs and they need all these other things, which is why this model works–but the services just aren’t there in most cities. It’s a big problem for most families in our national IDD community.
HR:
Well, certainly. And we all forget that the children turn into adults.
CN:
And the adults get older. I’ve got–we’ve got one man on our waiting list–he’s 55, the parents are 80 and 85. I learned, after working with them for a few months, he is not even their biological child, he is their foster son. That’s awfully old to still be the primary caretaker. We have another man who’s 45 with a traumatic brain injury. I mean, it’s just–the parents are getting old, the parents are tired and it costs a lot of money. So it’s a conundrum, it’s a big problem that we collectively need to address, and with the incidents of autism being higher all the time, or with it being diagnosed more, whatever the reasons are behind that, that community is aging and were going to be in big trouble as a society if we don’t pay attention to this collectively because it’s a problem. Affordable housing for this community is a problem. And it’s a fragile population, it needs attention, and, God-willing, we’ll be doing that on a daily basis. The government alone can’t fix it though, its something that we have to fix ourselves I think.
INTERVIEWR
What was your first exposure, Carolyn, to neurodiversity?
CN:
Like you said, we all are different. But I, personally have a very, very close friend whose husband left her when she was six months pregnant with their third child, and their second child had severe special needs, he had down syndrome and had a dual diagnosis with autism. He got potty trained I think about the time he was 19. He’s still non-verbal, has significant challenges, and I love this boy. Now I love this man, he’s 21 now. And he lives in a terrific place in Chapel Hill, North Carolina. She had to have him move to a different place when he was 13 because he started to outweigh her and you can’t physically care for somebody if they weigh more than you do. So she was there specifically because they had good services in orange county, north Carolyn. But that’s how I got familiar with this community.
HR:
Is there anything else that we haven’t covered, that you’d like to tell us about the Nashville IDD housing Group?
CN:
I think there’s just one thing, and that is for people who have not had the privilege of working with people who are neurodiverse, they need to try to fix that, and they need to get smarter, and the easiest way to get smarter is to ask questions, and one thing that I have found is that people who are smarter than myself, who is most everybody when it comes to neurodiversity, if you ask a question, you’ll get an answer. And if your question is a little bit on the stupid side, it doesn’t mater because you’re trying to get smart, and I have not yet met a person who is not willing to help hold my hand–to help me do my work better, and I think other people who are in my same boat who are kind of ignorant, because we don’t live with somebody with an IDD, it’s on us to try to get smarter and to ask questions. And I’ve not ever met a parent who’s not willing to help somebody who’s trying to learn more, and there’s no way that we can help embrace folks unless we know more, and you can’t know more unless you open your mouth and ask questions, because just staring at somebody or assuming that somebody is weird is just not very smart, we need to ask questions so that we can understand, and when we do understand, then we can behave in a way that makes it easier for them to interact with us. So it’s on us to get smart, I think that’s what I’d like to say. We need to do that in Nashville, you need to do it in Fort Lauderdale, people need to do it everywhere.
HR:
How have the companies been in responding to the employment needs?
CN:
Absolutely phenomenal. We have yet to meet an employer who is not willing to talk. From restaurants to our local baseball team, a triple A team, the Nashville Sounds, they had jobs in concessions and ticket-taking, and doing tickets is like a job so many people can do because so many have worked in grocery stores with bar-codes, they can do the ticket-taking like nobody’s business, and if they’re social they have a lot of fun while they’re at it. We have people working at best-buy, we have somebody else that works at Barnes and Noble. Some people work at offices, somebody works at a children’s hospital–all different kinds of jobs. But mostly, jobs can just be cobbled together. I mean all you have to do is walk into somebody’s place of business and you can figure out in a pretty quickly can a job be cobbled together from a little bit of everybody else’s job that frees them up to do other work. That’s possible. Or they have a job that the person can be competitively hired for. There’s a lot of positions that people can just go straight through the system and get hired for. It might need a job coach to help them get acclimated, but that’s no problem. Usually the only thing the outsider like us needs to do is to make sure that people on staff understand what disability is and how that might evidence itself, and that really on us to explain because they might not have had that exposure, so maybe somebody needs to be reminded that when their five minute break is up, their five minute break is up, and other people don’t get reminders. There’s little tiny things that some folks in our community need to make sure that they’re doing the job but they’re minor modifications, and it’s not very hard for an employer to accommodate the modifications that they may or may not need to make.
INTERVIEWR
Well, Carolyn, you’re really doing a great job there in Nashville and want to thank you for being here with us on Exploring Different Brains, and how do people learn more about you or get in touch with you?
CN:
We have a website at nashvilleIDDhousing.org. Were on Facebook with basically the same address, FaceBook.com/NashvilleIDDHousing. We are on twitter. Our twitter ID is @IDDHousing, so those are the three probably best ways, and then people can reach me via email, with my name, which is carolyn.naifeh@nashvilleIDDhousing.org.
HR:
Carolyn thank you very much, keep up the great work you’re doing for all of us, for everybody. And I hope to see you in person sometime.
CN:
Thank you so much for your support, Hackie, we appreciate it here.
HR:
Well we appreciate you. Thank you.
CN:
Bye.
HR:
We’ve been speaking with Carolyn Naifeh who has the Nashville IDD Housing Group. For more information, visit us at DifferentBrains.com
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This video is owned by Different Brains Inc, kindly donated by it’s original producer PCE Media LLC.
Different Brains® Inc. founder Harold “Hackie” Reitman, M.D. is an author, filmmaker, retired orthopedic surgeon, former professional heavyweight boxer, the past chairman and president (and current board member) of The Boys and Girls Clubs of Broward County, and a neurodiversity advocate. However, it was his role as a father that led to the creation of the DifferentBrains.org website.
Hackie’s daughter Rebecca grew up with epilepsy, 23 vascular brains tumors, and underwent 2 brain surgeries before the age of 5. Her struggles and recovery put him on the road to, through 26 professional heavyweight boxing matches, raising money for children’s charities (to which he donated every fight purse).
Rebecca eventually went on to graduate from Georgia Tech with a degree in Discrete Mathematics, and Dr. Reitman wrote and produced a film based on her experiences there (The Square Root of 2, starring Darby Stanchfield of ABC’s Scandal). After graduation, Rebecca received a diagnosis of Asperger’s syndrome. Hackie, shocked at his own ignorance of the topic despite being an M.D., embarked on years of research that culminated with his book Aspertools: The Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders, and Neurodiversity (released by HCI books, publishers of the Chicken Soup for the Soul series).
This experience revealed to Hackie the interconnectedness of the conditions that fall under the neurodiversity umbrella, while alerting him to the in-fighting and fractured relations that often plague the organizations tasked with serving the community. Convinced that overcoming these schisms could help all of society, Hackie forged the Different Brains philosophy of inclusive advocacy: “Supporting Neurodiversity – From Autism to Alzheimer’s and All Brains In Between”.
In the company’s initial years of operation, Hackie self-financed all of the content on DifferentBrains.org, all of which offered free to view to the public. Currently he is the host of our weekly interview show Exploring Different Brains, writes blogs for the site, and tours the country speaking at conferences, conventions and private functions, all with the goal of improving the lives of neurodiverse individuals and their families, and maximizing the potential of those with different brains. Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.
