Building pathways to sustainable, self-directed supportive housing for young adults with developmental disabilities.

Catherine Boyle is a commissioner of the Winchester Housing Authority, a member of the Winchester Housing Partnership Board, and has completed 60 hours of HUD housing counseling training. She is the recipient of two Margaret L. Bauman Awards: one for her work with Autism Housing Pathways, and another for the development of the St. Mary’s Curriculum for Students with Autism, a religious education curriculum. A former Foreign Service Officer, Catherine is a graduate of Dartmouth College and holds a certificate of graduate studies from UMASS Boston in adapting curriculum.

Interview with Cathy Boyle

Tell me a little bit about yourself. What called you to focus on improving an area of our community through your personal engagement?

We moved to Winchester in 1992. We moved here because the schools had good AP classes. Little did I know that I had two kids with disabilities who would never take an AP class…at that point, they were two and one at the time. Nonetheless, it did prove to be a good match for the school district anyway. I got involved when my kids were young in the Special Ed. Parent Advisory council and for a year I chaired the Inclusion Committee and then I became the PAC chair for three years. As my son got older, it became very clear that he was going to need residential services as an adult. It was also very clear that he would qualify for services, but he was such a complicated kid that we also knew that we couldn’t just rely on the normal things the state had to offer; we needed something more focused on his needs. As sort of a companion to that, it was also clear that most young adults with Autism do not get housing through the state when they reach 22. There are very few options out there for them and for other young people with developmental disabilities. So, we started Autism Housing Pathways in 2009. We just started as a group of parents that were getting together meeting to try to figure out “a house” for our kids who were going to age out of the Nashoba Learning Group.

What did you observe as a need/gap within our community that you hoped your civic involvement and leadership would begin to fill?

When we started looking to put together “a house,” we realized after six months of meeting and visioning, that we all wanted to do housing…but putting together a single house wasn’t going to come out of this group. So, we were going to need to bring in a lot more people, to start a lot more discussions, but what we had already found out at that point was that, to no surprise, housing was very complicated. Every time a group of parents wanted to put together a house they were going to have to learn and it seemed like a very bad idea that every time someone wanted to learn they had to “re-invent the wheel.” We decided, let’s form an umbrella group to gather the information and disseminate it to families to help them navigate the housing dilemma.

Look ahead a bit, or back a bit, and tell us how you see this calling of
yours enriching our common life. Any further dreams and visions?

Our original goal was simply to help families create sustainable, self-directed supportive housing. That is still very much what we are all about. As we started to unpack it, we realized there were various aspects to it. We wound up with four primary objectives. One is to educate the families; two is to improve the training for direct support staff; three is to research housing needs in Massachusetts and give that information back to the state; and four is to improve the ability of the housing sector generally to interact with people with autism. There are really two things that we are focused on going forward that we haven’t started at all really. One of these is to put together a series of online videos for adults with disabilities to coach them through their daily living skills, whether it is making a bed or plunging a toilet or shutting off the water main…all those things that can happen and can cause people to freeze. It can be a real barrier living on their own. We’ve already made three training videos for direct support staff and in the next couple of years we will finish the fourth one and at that point we would like to take those videos and go out and try to get some grant funding to directly train individuals to be direct support staff in a 3–5 day training and then steer them to employers. The big challenge is that the employers are not getting any funding for training really so that is a real weak link. So, if we can give them people with a basic understanding, they will have some clue what to do when they walk in the door, and to some extent we will have already screened out the people who find out that this isn’t what they want to do. An advantage of that approach is that while finding grant funding for people with disabilities is quite hard, there is actually a lot of job funding out there for job training. We are hoping to be able to tap into that.

When you started working in/with—Town government/ your classmates/ an organization/a cause— what were some of the biggest challenges you faced?

There were a lot of challenges. What we were doing that was very different was that we were coming at this from a family perspective. We weren’t coming at it from a provider perspective, we weren’t coming at it from a state agency perspective, we weren’t coming at it from the perspective of the individuals with disabilities themselves. Systems aren’t set up for that. So, it was finding our voice to some extent and getting to the point where the state agencies would listen to what we had to say; that providers would listen to what we had to say. It’s always a work in progress but we have come a long way toward that. What we found through this process is that there are a lot of programs out there to help people find affordable housing or get into owner occupied housing, but none of them are aimed at families trying to get housing for their kids with disabilities. These families are generally treated as if they are buying vacation property and it took a very long time to find ways in…to find out what were the things that we needed to tweak and how they could be tweaked to open doors. Those were big challenges.

What have been some of the biggest highlights so far?

We are really excited this year. We first proposed something a few years ago that now has come to fruition which is that now families can borrow $50,000 through the Home Modification Loan Program at 0% interest and deferred payment. So, you can borrow this to put on an accessory unit for a family member with a disability. We had been advocating for some sort of $50,000 deferred payment, 0% interest loan for several years and we finally brought it about with the cooperation of folks at the Mass Rehab Commission and the Community Economic Development Assistance Corporation to make this happen and become a reality. Additionally, families who are buying property for an adult family member with a disability needed a low down payment loan option. It turns out Fannie Mae has a provision that allows parents to pay 5% down and receive owner occupier rates even though they don’t live in a property when buying it for an adult with a disability. But no one in Massachusetts had been using this provision for several years and we found a mortgage lender who was willing to bring it back.

What has felt like a success to you in your efforts, your contribution to Winchester?

For the last ten years, I’ve been on the Winchester Housing Authority and working on efforts to create housing options for people with disabilities in Winchester. I can’t say we’re there yet but we’ve re-written the administrative plan for the housing authority to allow us, once we find the correct location, to have some options for people with disabilities.

Do you think being a woman has impacted how people view you as someone
involved in civic causes?

No, not really. You know its funny…the disability field is disproportionately made up of women…it is mothers. So, it almost flips everything on its ear. We had to go out and recruit a male to be on our board, to create some diversity. Our board was made up of middle-aged women.

Since this is the month honoring women, who is one woman who has inspired you and why?

That’s a tricky question. It’s not like there is one easy answer to that. Now, obviously given the age that I am, you know, when I was a child a lot of the people that I was trying to emulate were men because they were the ones who could “do” the kind of things that I wanted to do. But, at the same time, that didn’t mean I was unaware of women who were doing things. When I was a kid I was in awe of Eleanor Roosevelt, Abigail Adams, so forth and so on. I read Lord of the Rings when I was a kid, so I was very excited by Eowyn  riding into battle. As I got older, and had kids of my own, I really appreciated what my mother had done. She had done her Ph.D. when I was a child and started her teaching career while I was a child and so I really appreciated that work-life balance. I would say the last person I have always had a real fondness for was Elizabeth Cady Stanton and her soliloquy on the Solitude of Self. It’s a combination of things, I can’t point to one.

Any advice to share?

I am a great believer in the power of accomplishing small things and watching them aggregate over time. You know, you may not be able to do the big thing all at once but just start with small things and they will build into something much greater. It’s really empowering especially for women, especially for women with a child with a disability there is always something you can do.