Housing Myth Busting Community spotlight: Alexa B.
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 of the prevalent 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 Interviewee is Alexa. Alexa is a homeowner in Cumberland County. You may know Alexa as the social media and website manager for the Arc of Pennsylvania. She is also on the board of SAU1. When she isn’t busy working and volunteering, Alexa enjoys reading, watching movies, and spending time with her dog Chloe and with her friends, family and church community.
Alexa was interviewed by Housing Myth Busting team members and SAU1 power coaches Gretchen and Elijah. This interview has been lightly edited for clarity and length, but the words are all Alexa’s own.
Alexa, Can you tell us a little bit about where you live?
It’s in a suburb outside of Harrisburg. . . in a house right across the street from a bookstore.
Do you go to the bookstore?
Yeah!
And you own your house, right?
Yeah.
How long have you been living on your own?
I’ve been living here since 2015. I bought the house in 2014, but it took a year before it was ready for me to move in.
Was the house being renovated during that time?
Yeah, [they were making] modifications to my house. They made the front and back entrances wheelchair accessible, widened doorways, and made one big bathroom with a SureHands ceiling lift and a walk-in shower.
And people were figuring out who was going to pay for what, because I had OVR and a Waiver, and a grant paying for it, so it took a while until people figured out who would pay for what, so it was a little confusing.
What is one thing you know now that you wish you’d known before you started living on your own?
I wish I would have known that sometimes I would have to tell my personal care attendants every single thing that I need help with in the house. Things that I consider common courtesy and respect. Emptying the trash, doing the dishes, flushing the toilet, putting things back the way you found them when you're done with them, et cetera. . . . I might not be able to see everywhere in the house, so I might not know what all needs done, so that’s the only thing that’s really hard.
Is your house accessible to you?
Yeah, it’s a one story, and I have a Smart home, which means that I can control the doors and the TV and lights and everything all through my phone. I also have the Amazon Echo so I can do it with my voice, or my phone if I don’t feel like doing it by voice.
Is this how you shop?
I use Instacart. The technology has gotten a lot better since I moved in, so I use technology to help me and I can get things delivered so that I can do more shopping on my own and I don’t need help.
Who helped you plan your move to your own place?
My family. They knew I wanted to live independently. Both my sisters live in apartments. One lives in Philadelphia and the other lives in Washington DC. So, when I got finished with College, I wanted to do the same thing, but in my own way. I wanted to buy a house and make modifications to it. Sometimes when you live in an apartment, there are rules about what you can do and what you can’t.
Alexa, does your family live near you?
They live like 16-20 minutes away. I grew up around here and my parents live here, and I like the area. I knew I didn’t want to live too far away.
What are some steps you took before you moved from your family home to get ready to live in your own place?
I went to Edinboro University of Pennsylvania. It’s right in the middle of the Snow Belt, right near Erie, so it snowed all the time. And when I went there, they had a really cool program where you had your own personal care attendant, so if you needed something, you could just ring the call bell and they would come and help. That way, I could be more independent, and I didn’t have to have someone with me all the time. And I wanted to see how that worked.
Unfortunately, they don’t have that program any more. They discontinued it. So if you go there, you have to bring your own supports. That made me sad, because it helped me really get to know what getting to be independent felt like without worrying about my helpers. I graduated in 2013, so it must have been right after that that they discontinued it.
How are you paying for living in your own place?
I have a part time job with the Arc of Pennsylvania, an organization that advocates for people with intellectual and developmental disabilities. I do social media for them and I’ve been doing it since 2014, so almost 10 years. [I also have] SSI and a PA ABLE account.
Do you feel like you are receiving enough support?
Yes, but not in the way I would like, because ever since Covid, I’ve had a shortage of personal care attendants. Before Covid, all my shifts were filled like 95% of the time. I only have two helpers right now, so there are times when my family has to fill in and I wish it wouldn’t be that way. I know they don’t mind, but they have their own lives, and I want to live independently, just like everyone else.
You shared a bit about your human supports and tech supports-- do you want to share anything else about your supports?
[I have] Personal Care Attendants, a SmartPhone, Smart Home Technology, and other Assistive Technology. . . . I live in a Smart home, and also my power chair has bluetooth, and it connects to my phone so I can use it to work my phone and my computer
That’s really cool. That’s an amazing tool for independence.
I don’t think I’ve ever seen SmartHome technology. Does it turn things on by remote?
Yeah. It’s like using your Amazon Alexa and you can program it through the smart speaker. You can ask it to turn on your lights, or turn on the TV, or your appliances, or whatever you program it to do.
I have a question-- What happens when someone just calls your name, Alexa?
[laughs] That happens a lot of times on Zoom calls. My [device] is named Echo, not Alexa, but on calls, sometimes people will say my name, and then say “Wait a minute, let me turn this off,” because their smart device Alexa responds and starts going off
What skill do you think has been most important for living on your own?
Problem solving. I’ve been working on that for a really long time, since I was growing up, when I was really young. You just have to be really patient, and think “Okay, how can I solve this?”
What is one thing that is wonderful about living in your own place?
Being Independent, and making my own schedule, and not worrying about having to bother anyone.
Do you have housemates?
Not a human one, but I have a dog. I like being able to do my own thing and not bother anyone. [My dog] Chloe keeps me company. She’s a good dog, but she barks, and she might bother [a housemate]. Plus, I only have one bathroom. My house started out with two bathrooms, but we made it into one big bathroom so that I could put my ceiling lift in.
What kind of dog do you have?
A Cocker Spaniel. She used to sleep with me every night, but as she’s gotten older-- she’s nine years old, she’ll be ten in February-- she used to sleep with me every night, but now she likes to sleep in the living room. She likes to be able to keep an eye on the house because she’s very protective of me. She’s sleeping right now, otherwise she’d be back here, or barking.
Do you feel included in your neighborhood?
Yes. . . I don’t really know my neighbors very well, but I do go to church, and to the bookstore.
Do you have social spaces in your community that you use or go to frequently?
I go to church 2 times per week and the bookstore. I like to go to the bookstore with my mom, actually, because we get a coffee, then she comes back to the table with a pile of books.
What advice do you have for other people with disabilities who are thinking about getting their own place?
Be patient. The process might take a while depending on what you need and what modifications you might need to make to your house or apartment.
Like I said, it actually took me a year to move in here. I was getting really sad to the point where I didn’t think it was ever going to happen, because unfortunately people were fighting over the funding and having a difficult time deciding who was going to pay for what.
There was lots of confusion, and I didn’t think I was ever going to get to move it. It doesn’t seem like that long when I look at it now, but when I was going through it, it felt like it took forever.
So you’re saying “Don’t Give Up”?
Yeah, like I said to my best friend at the time, “I’m going to be old and gray by the time I move in!” And she said, “Okay. I’ll buy your hair dye!”
And I would also recommend that people talk to other people with disabilities. Talk to or visit other people with similar needs to yours who already live on their own.
Learn from their experiences and the way they set up their place to try to get ideas of what might work for you.
I have a friend. . . who lives in Philadelphia, and he lives in his own house with roommates. So I went to visit to see how he has his house set up, so that I could get an idea of what might work for me.
What do you like to do around your house when you have free time?
I like to watch movies, and read. And I do have a part time job, and you might know that I am also on the board of SAU1, so I have lots of volunteer activities. With those and my part time job, it keeps me busy.
This has been a lovely interview. Thank you so much for joining us.
Thank you!
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.
