Housing Myth Busting Community Spotlight: Ellen G.

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 Interviewee is Ellen G.  Ellen lives alone in a private apartment attached to her parents’ house in Montgomery County.  Among her many strengths, Ellen is a dedicated volunteer at a local retirement community, a horse enthusiast, and an instructor for Families CCAN’s Peer-to-Peer workshop.  Ellen uses both an iPad with a communication app and a letter board to communicate.

Ellen was interviewed on Zoom by Housing Myth Busting team members and SAU1 Project Ambassadors Jenny Champignon and David Champignon.  This interview  has been lightly edited for clarity and length, but the words are all Ellen’s own. 

Jenny: Can you tell us a little about where you live?

I live in a suburb in an apartment in my family home.  I rent it.

Jenny : That's awesome. So your apartment's attached to your family house. That's really cool.

David: That is really cool.  It’s something you don't see every day.  How long have you been living on your own?

Two years.

Jenny: Can you tell us how you decided to live on your own, or if you wanted a housemate?

No housemate.  I wanted to try living by myself first to see if I liked living separately from my parents.

David: Did you get to choose where you live?

Yes.

Jenny: Freedom of choice and control. I love that.

David: Yes. Freedom of choice and control is a very, very good thing.

Jenny: What were some things that you needed to consider when looking for a place to live?

I considered cost, having support nearby, and safety.

Jenny: Love that. Those are three very important things to consider.

David: What is one thing you know now that you wish you would have known before you started living on your own?

I  wish I had been better at taking care of myself and advocating for myself with others, including my support staff.

David: [Here’s a] little secret: I struggled with that for a couple years when I first moved to Pennsylvania.

Jenny : Yes, it's a big transition going from living with your family to living on your own. Sometimes it's hard to know what you need to know until you need to know it. Who helped you plan to live in your own place, Ellen?

My parents helped me plan my move.

David: What are some steps you took before you moved into your own home? 

I selected recipes, created menus, selected paint colors, chose kitchen cabinets, and other necessities and decorations.

Jenny: I love that. So your space is yours.

Yeah.

Jenny: That's awesome.  How are you paying for living in your own place?

I receive Social Security Disability Income, or SSDI.

David: What supports do you use to live more independently?

I have five support staff who are with me 24 hours a day, seven days a week.

Jenny: How do you use your supports?

My support staff drive me to my activities and shopping and help with my laundry, cooking, cleaning, and personal care.

Jenny: That's awesome. I'm glad you have such a big support staff to help you with that. Sometimes finding  enough care is very hard, so I'm glad you were able to figure out a system that works for you.  Do you receive waiver services?

Yes, I have the consolidated waiver.

David: Has the way you use your supports changed over time?

They know me better now, so they are able to help me find activities that interest me.  [They]  know my moods and when I'm not feeling well.

Jenny: I'm glad you have consistent caregivers. It makes it easier on both of you.

Yeah.

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

I can use my iPad with the GoTalk NOW app to communicate when my words aren't understood.

Jenny: I love that.  It's a good thing we have different ways to communicate so you can still speak up for yourself. 

David: Have you used Housing Transition and Tenancy Services?  If so, how did they help you? 

Yes, I [worked with HTTS Counselor] David Gates to help make independent living sustainable.

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

I have no adaptations.

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

I have an iPad with the communication app GoTalk NOW.

Jenny: I'm so glad you have that option to communicate.   Do you use Google or Alexa at all?

No.

Do you use a food delivery service?

No. I go to [a grocery store] with my support staff and buy my food for the week.

Jenny: That's awesome.  What is one thing that is wonderful about living in your own place?

Making my own decisions is wonderful.

Jenny: I love that.

David: How do you get around your community?

My support staff drive me around the community.  I occasionally use Uber if my staff have car problems.

Jenny: I like that you have both options.  Do you feel included in your neighborhood?

Yes, people are friendly when I walk around the neighborhood.

Jenny: I'm so glad you have great neighbors. We do too. And it makes a big difference.

David: It really does.  Do you have social spaces in your community that you use frequently?

Yes, I go to the YMCA, Variety Club, and [the retirement home where I volunteer].

David: So you go to many places in your community. That's great that you have so many options.

Jenny: Are there any accommodations or adaptations that you use to live your everyday life?

My iPad with the communication app GoTalk Now.

Jenny: I love that you've  been able to find a way to make your voice heard.

David: What advice do you have for other people with disabilities who are thinking about getting their own place?

I would suggest that all people with disabilities try living independently with support.

Jenny: As my mom always said, “there ain't no harm in trying.”  Sometimes we find that we're capable of more than we thought.

David: I can say from my own personal experience that I've grown leaps and bounds in independence since I moved out of my parents home so it is really something when you can do that.

Jenny: Ellen, I'm so glad you agreed to share your story with us. Thank you for taking the time to do this.

You’re welcome. 

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.