Housing Myth Busting Community Spotlight: Lori M.

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 Lori M.  Lori lives in Bucks County and receives support through the LifeSharing service.  As an SAU1 Board member, Lori advocates for herself and other people with disabilities.  She enjoys needlework, spending time with her family, and learning new things.  

Lori  was interviewed in her home by Housing Myth Busting team member and SAU1 power coach Gretchen.  This interview  has been lightly edited for clarity and length, but the words are all Lori’s own. 

So, Lori, Thank you for agreeing to this interview.

My pleasure. You're welcome.

This information is so valuable to people with disabilities.  So Lori, can you tell us a little bit about where you live?

I live in the house that I grew up in.  My parents passed away years ago, and I've been living off and on on my own since 2008 and since then, my siblings and I remodeled the whole house.  We widened the hallway for my wheelchair to fit through.  Everything is so easy for me.

Yeah, it's beautiful. So is it an apartment or townhouse? 

It's a townhouse.

Would you consider this rural, a small town, or a suburb?

A Suburb.

Do you own your home or rent it? 

I rent it from my siblings. 

Do you have any housemates?

Yes I do, I have a housemate and she is  my provider.  She works for an  agency. 

What supports do you use to live more independently?

I'm in the LifeSharing program, [a waiver service].  [I knew that] if I wanted to stay in the house that I grew up in, I needed to get a roommate. . .   My roommate and my provider and all my siblings give me support all the time.

What are some of the tasks that your roommate helps you with? 

Whenever I need help, I just ask for it. . . .  My parents and siblings taught me how to handle myself.  My roommate takes me to my doctor’s appointments, and wherever I need to go.  . . .  She does some shopping for me, and whatever I need.  And when she’s busy, I just order my ride through Septa Connect.  

Did you get to choose where you live?

Yes, I got to choose.

What were some things that you needed to consider when deciding where to  live?

I had family nearby--[I’m]  the youngest out of three other siblings.  They helped me make a choice. . . .   Two of my siblings live down in Jersey and Maine, and one sibling lives . . . right by me.  My sister and I went to Hershey park for 3 days.  We just came home.

It sounds like you have very strong connections to your family.

Oh, yeah. Yeah— my family, my team, my roommate.  They all support me in whatever I do, even when I go out to Harrisburg.

What is one thing you know now that you wish you’d known before you started living on your own?

Anything that I wish I could change?  I wouldn’t change anything.   It’s wonderful to live here.  I’ve got friends nearby.  The neighbors are nice to me.  They help me out when my roommate is working.

How are you paying for living in your own place? 

I rent from my siblings.  My rent comes out from my SSDI checks.

Has the way that you use your supports changed over time?

Well, I wouldn't say changed, I’ve got  a fantastic roommate, and great support people. And to me, nothing changed.

How do you speak up for yourself while still getting the support you need?

How do I speak up?  I just tell my team what I need.  And they give it to me.

What skill do you think has been most important to live on your own? 

Well, my roommate, she loves to bake.  And I've been watching her [and learning] how to bake.   I mean, I won't get near the stove, but it’s interesting watching people bake.  That way I can learn.   

Did  you have to make any adaptations to make your home accessible? 

Yeah, a wider hallway, a handicapped shower-- My laundry room used to be there,  where my shower is now.  They switched the laundry room to make a shower for me where my laundry room was.  They made a little ramp for me so I can come and go.  Everything is accessible. . . .  I used to have wall-to-wall carpet in the house.  So they removed the carpet.  Now it’s easier for me to get around.  One time, [when I still had carpet] I had an accident with my little toe, and I was like “Come on now!” 

What kinds of technology do you have in your home to help you with independence and safety? 

Nothing electronic.  My phone is the only electronic I need.

Do you use a food delivery service?

No.  My roommate tries to get me to eat healthy, and I’m doing my best to eat healthy.

So you guys go shopping? 

Yes.  Sometimes she does the shopping while I’m here, sometimes we go together.

How do you get around your community? 

I use SEPTA CCT Connect. It’s a door-to-door service.  And I do Uber sometimes.  But, I don’t pay for it.  My agency does.  

Do you feel included in your neighborhood?

Yeah, every now and then I go around the neighborhood-- I wheel myself around.  

Do you have social spaces in your community that you use or go to frequently?

Yeah, the Senior Citizens’ center, and I'm going back to school.

Tell us about that. 

Monday and Wednesday.   It’s a program. . .  that teaches adults how to read, do history, stuff like that.  It’s really good.  Oh, I love it.  I started in ‘09.

You’re busy, Lori!

Yeah, I am!

Do you use any accommodations that help you to live your everyday life? 

Yeah, my wheelchair.  I use it to get around.  I don’t want to [switch to] an electric wheelchair.  With my [manual chair], I can use the power of my arms.  

What advice do you have for other people with disabilities or thinking about getting their own place?

Well, if they're in wheelchairs, they should look for places with ramps.  And everyone [who is looking to get their own place] should go and look, and get a feel for the place.  Like, a Deaf person would need a switch that would flicker the lights off and on when the doorbell rings.  It needs to be accessible for any person’s disability-- to accommodate them.  

You mentioned that your roommate does some baking.  Is she a good baker?

She’s an amazing baker-- Amazing!  One morning, I came out to make my coffee, and I saw a big mountain of bread!

I’m so happy that you were able to work with your family to  arrange a solution for you to live independently and keep contributing to the community.  It’s a great example of choice and control.

Yeah, I like to focus on thinking about the happy things now.

It’s so good to hear your story, Lori.  It sounds like you’re really thriving.

Yeah, I am!

Is there anything else you want to share, Lori?

No, I don’t think so.  Like I said, I’ve got a fantastic roommate, and she’s fantastic and a great baker!

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.