Chapter 8: Working to Continually Innovate

09:29:21:23 - 09:32:16:21

Lisa: Marsha people with disabilities have been living successfully in the community for forty years or more?

Marsha: I think more, yeah.

Lisa: More?

Marsha: I'd make it fifty.

Lisa: Okay, fifty works for me. They have a physical address that says they're apart of community but I'm wondering if socially the integration has been as successful and yeah, what do you think?

Marsha: I think we have a long ways to go. I think I said earlier, I personally and we as an organization believe that we have made progress but we've not really scratched deeply the surface of what real inclusion is going to look like. I'm so proud to have been a part of the progress that we've made to date but even in orientation I think I shared with you that I say to people coming into the field, if anyone tells you that we know what we're doing, that person is not being honest or they're faking themselves out. I think we're getting better and better in terms of the processing and family members are driving that but yes, we have a lot of little pockets of three and four person homes where it's the very structure of it. If you have one staff person with three individuals and those three individuals want to do different things then great compromises are going to have to be made by two people for that one person who wants to go to the mall rather than to the movies or to volunteer that evening. So the very structure of the way that we done home does not really work to the benefit of individuals living the life that they want to live. I mean I'm saying to the individuals could be compatible. That might not be the issue at all but different people have different interests and you know, with my husband, if I want to go up and read at nine o'clock and he wants to continue to watch the ball game... yeah, that works. I don't think it always works real, real well for individuals in the kind of structure environments that we've created. It's not as though individuals are living forty and fifty people on a ward in an institution any longer, but I think we have a long way to go and a lot of listening to do to design better ways to support people.

09:32:18:20 - 09:35:29:00

Lisa: The work that you've done with ACHIEVA certainly affected change locally in Western Pennsylvania. Do you feel that through your work through ACHIEVA's programming you've been able to effect change either state-wide or even across the country?

Marsha: You know, I have the privilege early on in my career to be an appointee to the Accreditation Council. One of two appointees, as I said, along with Elizabeth Boggs and certainly the Council has done a great, great deal to change the way that people are providing service and supports. I had the opportunity of being the president of the National Conference of Executives of the ARCs and those with the 700 plus chapters and the professionals within and certainly hope that in my years on the board and as president, that I may have influenced a thing or two in terms of position statements. I was also actually the first person in the country to ever be allowed to be a member of the Board of Directors of the ARC of the United States with all these volunteers and I sort of broke through that barrier but as much as anything I've had the opportunity to travel to most of the states in the United States. I have provided substantial consultation to other organizations and the had the opportunity in both New Mexico and Florida come to mind as sort of top of the line when their state governments were resistant to applying for their first waivers and I know that I had some influence in testimony and getting those two states that were among the last states to want the federal government butting in on their business and to convince them they could vastly improve their community supports by filing for and subsequently getting Medicaid community based waivers. So yeah, it's been wonderful to work with colleagues from all over the country who share common values, who know that we're only part way on this horizon and to feel and understand with them that by working together we're going to accomplish a lot more and gain a lot more progress by sticking together as a family of people who share values and a dream about people with significant disabilities leading real, regular lives.

09:35:29:10 - 09:35:55:25

Lisa: Thank you. ACHIEVA's been so innovative but of course innovation requires funding and I think you've said the government sometimes feels most comfortable funding the tried and true.

Marsha: Yeah. they just don't fund. Government rarely funds innovation unless it's through litigation, or strong, strong, strong advocacy.

09:35:55:27 - 09:39:04:05

Lisa: So how do you continue to innovate?

Marsha: We are very fortunate to live in a wonderful, wonderful community and ACHIEVA is a high profile organization in our community. Currently we are on an eight million dollar capital campaign. Since we last met, Lisa, we were about at... we're well over six million dollars and all four undertakings are toward innovation and the development of new ways of looking at things, new ways of looking at things. One of our undertakings is... I'm not allowed to have a favorite in the four but... is called a Home of My Own. My colleague Nancy Murray is heading up this undertaking. We've been meeting with groups of families in several counties who were families still intact. Where sons and daughters are in their late twenties, mid twenties, late fourties and they're going to be on this Waiting List forever in Pennsylvania until something disintegrates with the family. These young people are not going to have the opportunity like their brothers and sisters who went to college to get off on their own and find an apartment and have a compatible roommate and so part of our major investment from this campaign is working with families. If there are two young women who have known each other forever, they went to school together, they're working close next to each other, the families have known each other forever, if they want to live together we're going to help families through private resources. Pulling together all of the various things that we can bring to bear with public resources to help these two women to live together and to get their parents out of their hair. So it just, it's an example of just we believe that right now you know with waivers as they exist, particularly the consolidated waiver in Pennsylvania it's an all or nothing. Either you're locked out and waiting or you're in a three person home and all of your needs for health, safety, and your well-being are bring met by the government. We think that there is a third rail. A lot of your families wait to participate just as they may have sent an older brother or younger brother to college, they have the means and want to participate in some way in supports for a son or daughter with disabilities and of course we have the trust that allows them to do that safely without interfering in any way with the government funding that we can bring to bear so just an example I mean, again, you've got to try new things because government is going to fund basically old things and I can't tell you what a pleasure it is to work with an organization that has the means to raise the funds to try new things.

09:39:05:23 - 09:41:39:18

Lisa: So throughout your career you and your colleagues I would assume often, to create risks and take risks to innovate professionally certainly maybe personally. I've heard about some of the letters that came to folks when institutions were threatened with closure. You did it all to better the lives of people with disabilities but why were you willing to do so? Why were you willing to put so much personally or professionally on the line to do so?

Marsha: First of all you have to have a Board of Trustees that's willing to back you and what some might say were occasionally whacky ideas. It truly my depth of admiration and friendship with a host of people with disabilities and their family members. They've allowed their dreams to become our dreams as professionals and what a privilege and what an opportunity to be a part of a movement that has accomplished so much in such a short period of time. I... I reflect sometimes on historical information from the time of the recording of information. These thousands of years where an individual with disabilities were viewed, if he or she were allowed to live, isolated, segregated, families became isolated. To be a part of this really adventurous fifty years, to have been born at the right place, I guess, at the right time to be a part of this is an unbelievable life experience. I've had great support from my husband and sons. To do something about which I have great passion and it's all about the individuals whom I've come to love and their families whom I've come to love.