Housing Myth Busting Community Spotlight: Jenny C. and David C. (part 2)
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 have been sharing a series of Community Spotlight Interviews. These interviews highlight the stories of individuals with disabilities who are living independently in the community.
Our final Housing Myth Busting Community Spotlight post highlights Jenny C. and David C. Due to the wealth of information they generously shared, this is the second of two blog posts based on interviews with Jenny and David. You can find the first part of their story here.
In this part of their interview, Jenny and David share more about accessibility, their relationship with their caregiver, and some challenges they have faced as a married couple with disabilities. 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, what supports do you use to live more independently?
Jenny: Our caregiver comes in twice daily: two hours in the morning, two hours at night, for both of us. We each get two hours for each shift. As far as other services, [we use] technological support and we use grocery delivery as well.
David: It definitely beats having to actually go to the store every time we need every time we need something. And as far as [our caregiver] goes, we couldn't live the lives that Jenny and I lead without [her]. She is an actual godsend– we joke that she knows us better than we know ourselves. And she knows when to intervene and help us out and also when to leave us alone.
And this is your direct support provider?
David: Yes.
Jenny: Yeah.
How are you paying for your supports?
Jenny: So our aide care is paid for by our Waivers. As far as [other services] like grocery delivery, we pay for subscriptions to that.
Can you share more about your food delivery service?
Jenny: Yeah, we generally use Walmart plus or Instacart– both have reasonable fees monthly that cover delivery. And we also use DoorDash if we want to order out but don't want to bother somebody to take us to dinner. That way we can still have the convenience of eating out, but we don't have to worry about finding a ride there and back.
And has the way that you use your supports changed over time?
Jenny: Yeah, I would say it has, because I used to receive 50 hours a week, and now, due to budget cuts, we each receive 28. Since we became a one-caregiver household for both of us, it made it easier because we only have to use the resources of one person versus having one person assigned to each of us. Since most of the cooking and cleaning is done for both of us, we decided to break it down and just go to one caregiver for both of us because it was just easier and those resources can then be allocated to someone [else] that needs it.
So would you say you've adapted pretty well to that change in your support hours?
Jenny: It took some getting used to, but we've definitely adapted. And we have quite the schedule down now, so we know when we need to have appointments and stuff that [our caregiver] can take us to and that kind of thing. We used to use public transit, but after COVID, it just became quicker, safer, and easier for her to transport us.
And how do you speak up for yourself while still getting the support you need?
Jenny: Well, I would think that we have the fortune of being with [our caregiver] for nine years– which isn't very common for those that receive support– so she knows what we want and need. And she helps advocate when we can't do that for ourselves. We also have a really good relationship with our current supports coordinator– she's more than willing to make modifications [to our service plans] as we need them for whatever the circumstances may be. And also being a professional self-advocate has taught me– And I think for both of us–- what I am entitled to because of my disability. So knowing a little bit about the laws and the ins and outs of advocacy has helped me become a better advocate for myself.
David: And I can say that I've become a much better self-advocate– especially from when I first moved out here. When I first moved out here, a lot of things were done for me, because I didn't know the ins and outs of self-advocacy, regrettably. But [our caregiver] and Jenny have both taught me– basically that I have a mouth and don't be afraid to use it appropriately when you need something.
That's great. What kinds of technology do you have in your home to help you with independence and or safety?
Jenny: We use Alexa devices in our home to help turn lights on and off and control our vacuum, because we use a Roomba vacuum. And even with my job, I use speech recognition to finish school and work. So technology is always a big support with independence and living on our own.
David: Yeah, we're always asking Alexa for help with turning lights on and off or helping with the vacuum. And what we like about the Roomba that we use is, we can tell it to vacuum and we can go outside and do our own thing, at least when it's working.
Jenny: The Alexa devices [also] act as an intercom. So if I'm outside and David’s inside and needs assistance, he can use the smart device to call me on my phone or call me from another device to ask for help, so we don't have to be with each other 24/7 for safety. He knows that he can use that to call my phone and it will call me and I’ll come inside and help him.
David: It really allows Jenny to have her own space with peace of mind and I would say that the same thing applies for me too. I know that she'll be okay to do her own thing.
That's nice, that it gives you that space when you need it.
Jenny: It's an extra added peace of mind thing, for both of us. We also have emergency alert buttons that connect right to emergency services. Sometimes we use them, sometimes we don't, because a lot of the time, it falsely predicts a fall because I'm leaning forward doing something. So I don't always wear it, but if I'm by myself I’ll throw it on for safety. And another thing [is that] if we fall, we have to call [our caregiver] too, because the ambulance personnel around here are not allowed to touch our wheelchair. So we have to call [our caregiver] anyway.
They're not allowed to touch your wheelchair?
David: Yeah, it's too much of a liability and they may get sued for damaging it.
Jenny: They can put us in our wheelchair, but they cannot physically move it to where it needs to be moved. So I have to call somebody else, too, to help me move my chair if I'm on the floor. So that leads us to most of the time I just call [our caregiver] and I'm like, “um, So I'm on the floor and she's like, “ I'll be right there.”
How far away does your caregiver live?
David: It's like a three or four minute drive.
And how do you get around in your community?
Jenny: Generally, our aide takes us because the bus isn't always conducive to appointment times. You know, I've had instances where I'm an hour late to my appointment because the bus is running late. It's not always reliable, especially in the wintertime, even though we live in a town area. So it's just sometimes easier to take our own car. We just schedule our appointments around the times that [our caregiver] is available. And my family is always really good about helping us get places for family gatherings.
Is that helpful for you too, David?
David: Yes, they're always willing to include us in those family gatherings so it's nice, particularly when we go to Jenny’s aunt’s for Thanksgiving– it’s always good to see them.
So do you ever use Uber or other ride sharing services?
Jenny: Those are not available in our area, unfortunately. At least not accessibly.
Are there any accommodations or adaptations that you use to live your everyday life?
Jenny: I would say the most notable one for me is speech-to-text. I use that on my phone. I also use that on my work computer and I used it when I was in college. But I definitely use it for work when I have work to do. And I use it for texting and things like that. And honestly, there's probably ones I'm forgetting because it's so second nature that I don't even think about them anymore.
What about you, David? Can you think of any other examples?
David: Well, when I think about things like going out to the barber or hairdresser– [our caregiver] actually cuts my hair. And we also have a chiropractor that comes to the house. So, people in our community are more willing to come to us rather than us having to come to them.
Jenny: my dog groomer comes to me, my hairdresser comes to me, my chiropractor comes to me. . . .
David: Yes.
That's a really cool point– the fact that you live in a community where a lot of people are willing to come to you. It's an interesting way to think about accessibility because we always think about physical accessibility [of public spaces]. But another way of providing access is to have somebody come out to your home, which is already accessible, and which is already built for you.
David: And I really like to think of it as one of the advantages of living in a smaller town. And having been a city slicker for the first 27 years of my life, I'm getting to see the advantages of smaller town life.
Jenny: It’s just about finding the spots and the people that are willing to work with you and figure out ways to make life work around your needs and wants.
And I was wondering–So if your caregiver, for some reason, is not available, what do you do? Does your family help you?
Jenny: Our family, yes.-- our informal supports.
Could you go without support for a full 24 hours?
Jenny: Yes, and we have, but it takes a lot of pre-planning. So, blankets are out, we have food options that I don't really have to cook–I can cook– but obviously, if there’s a snowstorm, none of us are cooking if the power's out. We had a 44 inch snowfall one year. And the aides couldn't get here for two days. . . . We kicked back and slept in our chairs. You make do with what you have to.
David: We were supposed to get 16 inches from that storm and we ended up with 44. In March.
Wow! I think it's good, though, for folks who are thinking about living on their own, when they’re reading your interview, to know that they need a backup plan.
David: Yeah. Oh, definitely. Also, I would say COVID has really taught us to have a backup plan for your backup plan.
Absolutely. Has there ever been a time when you didn't have time to prepare when you were without service? Like with a snowstorm, I know you've got extra food, you plan that somebody might not be able to get there. But what if your aide became sick suddenly?
Jenny: So that actually happened. She ended up being in the hospital for three days. And I was able to call my aunt and be like, “Our aide is not available, and so we need help.” And that was not during a snowstorm, so it was okay.
Does your aide work through an agency?
Jenny: No, she works directly. The state pays her. But she works strictly for us.
So it's kind of like self-direction?
Jenny: Uh-huh.
Your waiver is through the Office of Long-Term Living, right?
Jenny: Correct.
You currently have one caregiver who assists both of you. Can you share a little more about how that came about?
Jenny: That’s correct. Because I had to let my [previous] aide go, because there were days that she would just call me 10 minutes before work and say, “I'm not coming today.” And we had talked to my case manager and I was like, “We can't find somebody else. What do we do?” And she's like, “Well, as long as the times don't overlap, one person can take care of both of you.”
Okay.
Jenny: And because we're both in the same home, we thought, “Well, what the heck is the sense in having two people?-- one for each person– when we're both living here, we both need the same types of support.” It was [our aide] that came up with the idea of just it being her– just because that way, it was less coordination. She is wonderful.
David: Yes. She's a real diamond in the rough.
Jenny: She has been with us for nine years.
It’s wonderful to be able to find a partner like that.
Jenny: And her son actually. . . . asked to learn how to help and how to take care of us. And he's grown to love it. So [when he’s done with school], he wants to take her weekends off.
Oh, that's nice. That's good to know and that way you know that you're in good hands, but also [your caregiver] gets a little time off, because I'm sure she has days when maybe she has appointments or something.
Jenny: Right.
David: Yes. There was one point, what was it? A year and a half, two years ago, where she worked, what, seven or eight months straight?
Jenny: Yeah, seven months straight. Because they had no agencies for us. So it was just her every day, all day for seven months.
David: Yeah.
And so what is happening now on her days off? Do you have an agency person?
Jenny: An agency does come in, yeah, every other weekend. We don't like the agency model because there's so many restrictions. But, you know, you got to do what you got to do.
Are they restricted in the hours that they can come or what or what they can do?
Jenny: Both. So, when I was first looking at getting a job, one of the jobs I applied for, I had to be there early in the morning, and I called the agency and I said, “Can you have somebody here by seven to get me up and around and ready to go? Because I have to catch the bus by 7.30.” And they're like, “Absolutely not. We don't come any earlier than eight o'clock in the morning.”
What about people who have to get to work before then?
Jenny: That's [one of the reasons] we couldn't find a job.
David: to be and to be very honest with you, this isn't just a PA thing, this is an across the country thing. People with disabilities cannot work because the agencies have so many restrictions. So that it's practically impossible for those that want a job, to get a job, because the default is, “well, you get on a bus and the bus takes you to work and home” and if you miss the bus, you're screwed.
That's such an important point to share with people.
Jenny: And then if your shift gets changed, it's not like you can say, “okay, well, I could be in”, whereas here, working from home, it's like, “Oh, we have a surprise meeting. Okay, no problem.” We don't have that luxury working outside of the home.
David: No, SAU1 has always been good at providing the flexibility for people to work on their own schedule with the understanding that you can get to a meeting from your home. That's part of the reason we like it so much.
It's a lot to think about.
Jenny: Yeah. And also, “Is the place I'm working accessible enough to use the restroom while I'm there?” When I did an unpaid internship for my local newspaper, it was four hours a day, three days a week. And the whole time I was there, I couldn't use the bathroom. Because it was not accessible. And because it was an older building, they didn't have to make it accessible. So there's a lot more to consider than people realize.
These are all such important points.
Jenny: [People have to consider] not only accessibility in their home, but also accessibility within the community in which you choose to live. I mean, I was even told when I [needed a hospital stay] that they couldn't accommodate me at the hospital and [our aide] had offered to come stay with me and they said, “No, we can't allow outside individuals to help with care.” And she was like. “Okay. But you're telling me you don't have the staff to do it. I'm willing to come do it and you're not going to allow me to.”
David: I'm thinking about my own experience. [I had an] accident on Father's Day and [needed hospitalization and a] subsequent nursing home stay. If I had any other job besides my job here at SAU1, they could have used my misfortune as an excuse to fire me.
Jenny: And this is a little off topic, but related. There was one time where, In order to qualify for benefits, David and I had to actively consider getting legally divorced. . . because our case manager had [accidentally] filled out our paperwork wrong. And, our county assistance manager was like, “Well, you don't qualify [for benefits].” And I'm like, “Well, what do I need to do to qualify?” and she said, “Well, you might need to legally separate.” And I'm like, “Are you kidding?”
That was her solution?
Jenny: Yeah.
David: Yeah.
Jenny: But then she realized she made a mistake and fixed it and we were fine. But yeah, that was the solution: “If you want to continue to qualify for benefits, you might need to get a divorce.” I had just gotten a benefits increase because of my father's death. She didn't realize we were both on the same type of disability benefit. It was filled out incorrectly in our file. So it didn't apply to us, but she called and was like, “How are you going to fix this?” And I said, “What are my options?” She goes, “Well, you could get a divorce.”
Well, that was probably a really tough conversation to have.
Jenny: It was. [Another time], I told them, “We didn't qualify for food stamps. What can I do to help myself financially here?” And she literally said, “Once you have more kids, I can talk to you about it.”
What?!
Jenny: Yeah. She's like, “Well, go have more children and then we can have a conversation about the help you can get.” That's a common answer we get.
David: And the thing that gets me is, these different people talk about protecting the institution of marriage. Well, protect the institution of marriage by not asking people with disabilities to get divorced to keep their benefits.
Jenny: It goes along with the power of assumption. It’s assumed [that if you have a disability] you're never going to get married and be a productive member of society. There's still that mass amount of assumption.
David: Certainly.
Jenny: In [my graduate school] classes, we talked a lot about how the social model of disability is different, because society actually creates disability by not having things accessible to all people.
David: And it's a really sad thing, but there aren't many married people with disabilities in this country.
Jenny: Because it makes it seem as though you'd be worse off if you were to get married, which is true in some cases. But we live in such a progressive world that everyone should be allowed to marry and be with who they want, regardless of circumstance.
David: Oh, yes.
Jenny: And I also think [our experience] says a lot for the dynamic of ableism because we're still living in a society that's largely ableist.
Well, thank you, Jenny and David. I'm so glad that we got a chance to hear more of your story.
David: Well, thank you.
Jenny: Thank you. I hope we were able to enlighten a little bit and help you understand a little bit better.
This project was funded by the Pennsylvania Developmental Disabilities Council. To learn more about the project, please visit our Housing Myth Busting page.
