Housing Myth Busting Community Spotlight: Jenny C. and David C. (part 1)

Families CCAN is proud to be a recipient of the PA Developmental Disabilities Council’s  Housing Myth Busting grant.  The goal of our project is to break down some common myths, or falsehoods, about housing for adults with disabilities. 

Along with our partners from Self Advocates United as One (SAU1), we are sharing information about Independent Living for Adults with disabilities.  

As part of our project, we are sharing a series of Community Spotlight Interviews.  These interviews highlight the stories of individuals with disabilities who are living independently in the community.  

Our next Housing Myth Busting Community Spotlight Interviewees are Jenny C. and David C.  Due to the wealth of information they generously  shared, this is the first of two blog posts based on interviews with Jenny and David.

 Jenny and David are a married couple who currently live in Bradford County.  They are both project ambassadors for Self Advocates United as One (SAU1), and we are proud to have them as members of the Housing Myth Busting Team.  Jenny and David are both very involved in advocacy activities.  David holds a bachelor’s degree in Political Science.  Jenny holds a bachelor’s degree in communications and a Graduate Certificate in Intellectual and Developmental Disability.  

David and Jenny were  interviewed on Zoom by Housing Myth Busting team member and SAU1 Power Coach Elijah Conger.  This interview  has been lightly edited for clarity and length, but the words are all their own. 

So Jenny and David, can you tell us a little about where you live?

Jenny:  Well, we live in Bradford County, which is mostly rural. But we live in town and we rent our house.  It  actually used to be my mom's house. . . .  We had modifications done to it-- more modifications than we did when I was in high school living here-- to accommodate two wheelchairs instead of just one. . . .  We took out one of the bathrooms to make our bedroom bigger, to fit 2 wheelchairs instead of one.  We have a really open floor plan.

David: We live in what I consider a small town, and we did have to have a lot of modifications before we even thought about  moving in.  In fact, the floors were being done and it actually delayed my move in here by four weeks back in December of 2014, so not all the modifications that needed to be done were done at the original time.

Jenny: Yeah, we were ripping up all the carpet because carpets and wheelchairs don't mix, and we put wood flooring in.

And how and how long have you been living on your own?

Jenny:  Since 2014.  December 29th, actually, of 2014, so about 10 years.

And did you get to choose where you live?

Jenny: Yeah, to an extent.  You have to take into consideration where it is accessible as far as transportation, so you want somewhere close.  You have to consider the community you want to live in, because they need to have modifications too. Access to accessibility is a big factor in deciding where you live, but yes, we did choose this place,  because it was more accessible, instead of living with David's family down in Jersey or out where I grew up in [a nearby town].

What were some of the things you needed to consider when looking for a place to live?

David:  For both of us it came down to primarily  transportation and accessibility.  Believe it or not, particularly at the time, the transportation accessibility was actually better here than it was in suburban New Jersey.    I had a volunteer job and  I was gonna go with a transit agency in New Jersey, and according to their routes, they were gonna drop me off a mile from where my volunteer job was, and my parents said absolutely not-- so [access to transportation] was a major factor.

Jenny: And also it's important to note that I had already lived in this home when I was in high school, because this used to be my mom's house.  So a lot of the modifications were already done.  It was accessible for a wheelchair.  We just had to make it extra accessible for two wheelchairs.  So that was a big factor as well.

And what is one thing you know now that you wish you'd known before you started living on your own?

Jenny: I think for me-- and David's might be different,  because he has a different experience than I do-- for me it's realizing that even though there are care agencies, personal care is not easy to come by.  Even though there are agencies around, they're having trouble staffing for two people in the same home.

David: For me--  let's just say I wasn't the best self-advocate when I moved here in 2014.  So a lot of it is an ongoing learning process.  And I can rightly say that I've learned more stuff now at 35 than I even learned when I was 18 years old or even in college.

Well, that's good.  And, who helped you move into your own place?

Jenny: Well, I think David's parents, because we rent from them.  After my mom passed away, they purchased this home and we rent it from them.  They were greatly supportive and then my family--my aunt and uncle-- were supportive.  They helped me get the house ready for David since I was closer,  and we had to get care aligned  for both of us. So that changed the moving-in process. And as we've evolved, and David's become more independent,  now one aide can handle both of us instead of having two aides for two people, because we were kind of stepping on each other's toes. 

So you have one care aide?

Jenny: Yep, for both of us.  She works two hours  for me and then two hours for David back to back.

Are they always the same hours every day?

Jenny: Yep. 

Is somebody there 24/7? Or just those 4 hours? 

Jenny:  So we each get 2 hours in the morning and 2 hours at night and then during the day we help each other.   Almost 13 years of together-- It’s like we’re the team.  What he can’t do, I can;  and what I can’t do, he helps me with.  So we genuinely make a good team.

Has there been a time when [your aide] wasn't available? What did you do?

Jenny: So yeah, we don't have very many backups right now.  No one, to be honest, because the aide situation since the pandemic is just a problem statewide.  We hear about it all the time. And so when [our aide] can't get here--say for example, there's a snowstorm and she can't get here.   We live in Northeast PA where that happens.  She’ll get us all set up and safe, and then if there's a problem, we can always call the neighbor if we really need to.  Sometimes what happens is David and I decide that it's safer if we know we're gonna be by ourselves-- We just work together.  We make it work.  Because I'm capable of providing some of his supports and he mine-- not everything, obviously-- but if it's just a temporary situation, we make it work, cause you know, what other choice do you have?

And what are some steps you took before you moved in together?

Jenny:  I would say the biggest thing is we did a lot of comparing where to live for accessibility reasons, and we had to make the house more accessible for. . . two wheelchairs instead of one.  And have aide care arranged and all of that, before we could move in together.

Are there any other things you need to negotiate about sharing space within your home?

Jenny: Hey David, do you wanna take that one?

David: Well, yes.  When sharing space in our home, we have to communicate better because, for lack of a better word, we don't want to run into each other.  And particularly when I first  moved in here, I would collide with Jenny a lot.  Some of it's about the most basic communication.  And then the other thing to negotiate is time-- some time by ourselves-- ideally every day.   Because us being together  24-7, is very unusual.

Jenny:  Not only do we live together, but we also work together.

Oh yeah, and I notice  you both have  separate work spaces.

Both Jenny and David: Yes. 

Jenny: Unless we're working on a project together and then we'll go sit together and work on it.

Were there any other adaptations you needed to make your home accessible?

Jenny: We needed to be able to travel,  the two of us together,  so we had to invest in an accessible vehicle that fits two wheelchairs instead of just one.  

Do either of you drive?

Jenny: [laughing] No, unless we wanna kill somebody.  My eyes-- actually I'm almost completely blind.  So that would not be a good move.

David: And as for my eyes-- I have near perfect vision in both eyes, but my two eyes refuse to work together, so driving is out of the question for me.

Jenny: [Another] thing I had to adapt when we moved in [was the kitchen] because we had an electric stove and I can't reach the knobs.  So I use a lot of crockpots. .

You kind of just throw everything in, turn it on, and  you're good to go. And we also have a toaster oven with multi functions that we use and I also have--in place of a stove-- I have a new wave induction cook top.  So there's no chance of getting hurt, because it's right at eye level and we actually have a section of our counter that's cut out underneath so I can roll right under it and cook.

Are the counters lower?

Jenny: Yep. Yep. As are the cupboards. 

And how are you paying for living in your own place?

Jenny: Well, our social security and jobs.

And, what other supports are you receiving? 

Jenny:  We're on the Office of Long Term Living waiver and that pays for Supports Coordination and our aide care.

And how do those supports help you live more independently?

Jenny: I would say for me, it's just a matter of having someone here in case I need help.  There are things that I know I need help with, and she knows what they are. But there are also things that I'm like, “I wanna try it.”    And she's willing to let me try it and just supervise.  So it's really important that you have good communication with your supports, because they have to know what you want and need from them.

Yes, that's very important.  What skill do you think has been  the most important for living on your own?

David:  Well, for me, I would say that especially in comparison to when I first moved out here, I'm a much better self-advocate.  And it feels liberating, because there was so much that I didn't know about independence before I moved out here that It's been legitimately eye-opening.

Jenny: We've focused on David's independence and being able to do things on his own.  And I am so proud of where he started and where he's gone.

David: Thank you, Jenny.

Jenny: We split tasks.  David can't safely cook, so he cleans dinner up and puts the dishes away.  We've developed a routine.  Yes, we have an aide, but we like to do what we can on our own, so we've divided it in a way that we're both comfortable with, where [we] do it safely.   We both contribute equally, I feel

David: Me too.  It didn't start out that way, but because of the gains I have made, I have learned so much.

Thank you for sharing.  And what is one thing that is wonderful about living in your own place?

Jenny: That you have your own space in your own ways;  That you can do things the way you want to do it;  That you have the freedom to make your choices and you have control over your own choices.  I get to experience what I can and cannot do, comfortably, in a way that's safe.  What about for you, David?

David: Oh, absolutely.  It was a necessary step for me because I am such a better human being and a more patient human being.  It's the difference between night night and day and I'm grateful for those that made our situation possible-- the coalition that has made it possible.  What I’d like to say is that we call different States home, but everyone has an interest in our success as people.  It's really, really nice.

Jenny: Supportive family and supportive workers is the key to success.

David: Yes.

Those are really great points. Thank you.  And do you feel included in your neighborhood?

Jenny:  Our neighborhood is honestly pretty quiet. There is not always a lot to do. But the neighbors that we have across the way and right next door were the same neighbors that we had when my mom was here, so they know us very well.  And we always make it a point to go to stuff locally if we are capable and the timing works out for our aide care. 

And our aide is really good about making sure we get to do things within our community, even if that means that we have to adjust her schedule.  For example, her son played football. And we wanted to go to some high school football games anyway, so it was nice because she could go watch her son and in the same turn, we could get out in the community, you know.  So she's really supportive about making sure we're able to do what we want to do.

Oh, that's great.  Are there like any other social spaces that you go to frequently?

Jenny: Well, we did go to church before COVID, but we don't go as much now. We just watch it online.  I'm trying to think. I don't think there's anything to really add. I would say that having a job has allowed me to better be a part of the community.   Especially for this job, because if somebody needs resources, I'm able to connect them to those resources now.  So that has helped in the way I communicate with other advocates and things like that.

Oh yeah, and you both do a wonderful job.

David: Thank you.

You're welcome.  Do either of you have any advice for other people with disabilities who are thinking about getting their own place?

Jenny: For me, I would say make sure that you have a plan, and make sure your supports are lined up so you  have the best chances of success.  And make sure that your support team knows what you want and expect out of living on your own so that they can better help you reach that goal.

David: I would say that it might require one to do a lot of homework, but it is so worth it in the end to exercise your right to advocate for what you want.  The beginning might be difficult, but it is so worth it in the end.  

Jenny:  It's daunting.  Finding accessible housing and finding the supports you need is daunting, and it feels like a mountain that you can't find the top of.  But that's why I think [the work that] we all do, with the support of Families CCAN and SAU1, is so important.   If you break it down, it's really not that intimidating, but if you try to climb the mountain all at once, it is.  Especially getting benefits set up and accessible housing.  If you're moving from a different state you have to set up your benefits for the state you're moving to, which is something we experienced with David.  There's a lot a lot to think about.  So take your time with it I guess

How did you all meet?

Jenny: Are you comfortable with me sharing it David?

David: Yes, yes, absolutely, absolutely.

Jenny: Okay, so we both went to Edinboro University of Pennsylvania. And we met there.  We actually met when I was turning 19.  My mom had surprised me and brought up a whole cake and everything for my birthday that weekend. And I didn't even know we were allowed on the boy’s side of the dorm to be honest with you.  And my friends at the time were like “we don't live in the sixties Jenny.”  And I said, "So that means I can go over there?”  We decided, “well, guys like cake and food and craziness,” so we decided “we'll invite them, they'll eat it.” So that's how I met David, because he came for cake, obviously.

And so that's how we met, but the funny part comes later, when my mom said, “So I want to know what's going on between you and that David kid.”   And I said, “Nothing, why?”  She said, “Because I think there should be.  You need to get on that.”

And I was like, “Alright.”  So, when she cut David's piece of cake,  it landed icing-side down on the floor. . . .  And so it's been a running joke.  Because David proposed to me with that cake in 2013.  The ring was sitting on top.  And by this point, my mom had been gone for a little over a year.  She battled cancer.  And she had been gone a little bit over a year.  And so when we went to cut the first piece of cake, it landed icing-side down on the floor.

And it happened at our wedding too. I brought the top tier of the cake home. They didn't have the box shut, and the whole top tier of the cake landed icing-side down on the floor.

Yes. It always has been every time I cut him a piece of cake it always lands on the floor.

David: Hijinks with cake. 

Jenny: And so the running joke is if there's cake, now I'm like, “where's my ring?”  Because cake always comes with funny moments and shiny things.  Yeah, so that's how we met.

David, you mentioned earlier that you're working really hard on self-advocacy and it sounds like you’ve  done a lot of work on becoming more independent.   Are you comfortable sharing an example of  something that you felt proud of that you've been able to do that maybe you couldn't do when you were even in college?

David:  Well, one example I can give is that I am so much better at talking on the phone. When I moved in here, I won't lie, Jenny and [our aide] had to do a lot for me.

And it is a liberating feeling now.  Jenny can do things on her own-- like schoolwork-- and I can take care of the house. [laughing] And,  I won't set it on fire.  It's really liberating that we both have things that we do  around the house.  And we both feel more like equal partners.

That's so great. It seems like you two  have a really wonderful partnership. And it seems like a lot of that has to do with having open and honest communication.

David: Yeah.

Jenny: It's very important --with your staff, with yourself,  in this case with your husband, with anybody.  If you're gonna live on your own, you need to communicate. You need to advocate. You need to know what you want so that you can work towards accomplishing those goals.

David: Right.

This project is funded by the Pennsylvania Developmental Disabilities Council.  To learn more about the project and how you can get involved, please visit our Housing Myth Busting page.