Chapter Six: Visions for Equality

07:40:43:00 - 07:46:08:01 Lisa: Can you tell me a little bit about how Visions started, and why you decided to open your own agency?

Dee: Well, Visions started first because I had taken that job for Estelle Richmond, moving people out of -- the Danny B. people out of Woodhaven. Certainly not to blow my own horn, but it went so successfully that they were able to finish the case with Judge Shapiro and close it, and the whole 119 people left; nobody stayed behind. And shortly thereafter, they were trying to close Embreeville, and there was a settlement agreement that was reached in the Embreeville case that required consumers -- family satisfaction teams, and that they be independent of the system, because the families there also were fighting very hard to -- number one, they were fighting not to close it, but once they realized they couldn't stop that, they fought very hard to see that what they wanted for their sons and daughters, and the people that were leaving there, was honored. And they wanted these teams set up who would be separate from the system, who would see that they were moved out in the way that was compassionate, understanding, and respectful. So the city of Philadelphia, Kathy Sykes, asked me if I was willing to consider doing this, and she explained to me that it had to be an independent entity which required that you set up an organization separate from everything. At that time I was working back at the ARC, because that's where my home was -- my home office was there, and I was still moving people out from Embreeville. I had just finished moving them out and I was following them in the community, and she told us what I needed to do, and Maureen Devaney was working with me at that time at the ARC as a community advocate, and I asked her if she'd like to join me to do it. And at first she said to me, you can do it, and I said no, I don't want to do it alone, and then we spent a lot of time -- it was halfway through the year. Kathy Sykes came with about this much information, and said you need to fill out all of this in order to have a contract with the city, and I wasn't a particular business woman or understood what it was to set up an organization from the standpoint of running and actually delivering services. I knew how to set up a parent organization, but not one that would deliver service. So Maureen and I actually worked all the way through Christmas, writing the grant, and it was certainly my first experience. Maureen had a little bit of experience before me, and on New Year's Eve at 5:00, we delivered it to the city, and in July they called us on the phone and said, you're going to do this. You need to set all of this up and get started, and that became Vision for Equality. And Maureen and I decided from the very beginning it was going to be a grassroots organization that represented people with disabilities and families. Having the creation of the teams was one thing, but we wanted to create what we felt ought to exist for families in the community, that we didn't think existed at that point. And so, you know, it took us -- we sat on crates, and we didn't have any furniture, and we moved into a little building on Spring Garden Street, and initially the city said you can't do this on your own, so you get a 501(c)(3). And I remember the first time that we got our contract, and it was for a couple hundred thousand dollars, to do this, and I was like beside myself because I was -- it was so incredible to think -- I mean, this was an awesome responsibility, to be responsible for this money, and what were we going to do with it? Because we still had to create everything, but we did it, and now over in existence almost 15 years. But it's been wonderful, because over the years, we've thank goodness to this city, and many other people who have seen the worth in the work that we do, we have been able to -- many, many families and self-advocates gravitate to us, and so most of the people that work for us are people with disabilities or family members, and they're always the right kind of people because they're supposed to be there. I always felt -- I told Maureen years ago, even before this happened, that I thought something like this was going to happen to us, and I couldn't tell her why, but I just had this feeling that someday we were going to have an organization for families and self-advocates. And Estelle and Kathy Sykes and Larry Pace gave us an opportunity to do it, and I think it's been great.

07:46:16:10 - 07:47:12:08 Lisa: Dee, you've worked over the years, on your own and through Visions with so many families. In your opinion, what impact does caring for a child with a disability have on family members?

Dee: I think the impact of having a child with a disability can be quite different for each family, because I think a lot has to do with what kind of support you have in your life, what's inside you, what resources exist outside you, and the stressors, whether you can withstand the stressors, and whether the family can continue to function, and whether you're able to get the supports that you need, in order to be able to do it the way you should be able to do it, and still maintain a family life for everybody.