Chapter 5:Outreach Efforts and the System Today
02:32:59:14 - 02:33:11:29 Lisa: It seems like you take as much satisfaction in your work, working directly with families as you do with your, your successes in the legal system.
Ilene: I actually think I, I, that's something I feel more, that's more important to me, working with families and consumers.
02:33:14:10 - 02:34:19:19 Lisa: So all of these systemic changes, fighting the systems and, and working towards these systemic changes, it must be exhausting and sometimes seem like an uphill battle so how do you retain your passion for the work?
Ilene: Well, right now, I think it's harder than ever because I think what we are seeing and I don't know how much you want me to go into this. Is what we're seeing is an unwinding of all of what we've accomplished, um, you, your, were beginning to see I think, um, putting people into institutions is not such a bad thing is what we're beginning to see from this administration. We're, there's definitely an attack on the community programs. The quality is, is, uh, going down, uh, they're now going to increase the size of community programs. I mean, by every criteria, by every measure we're going backwards more rapidly than we went forward and as it took us 40 or 50 years to get where we are and yet it's scary to see how quickly we're, we're going back. Um, there is not the commitment, um, of the current administration to protecting the rights and needs of people with disabilities that we've seen in every administration prior to this.
02:34:20:29 - 02:35:24:16 Lisa: Is there a reason?
Ilene: Well, the reason they would give, I think is, is because of financial, uh, financial, the difficulty in the economy but that alone doesn't explain it.
Lisa: Well, there's also been, uh, I think, uh, a lack of opportunity for input to some of the changes that have been made by the current administration.
Ilene: There's no, no input. They, things are done in a vacuum and, and not only does that frustrate the community, the advocacy community but if you're a bureaucrat sometimes you should hear what the other side thinks or the other people think. Just because you want to make sure what you're doing is right. You may make mistakes. You may reject what they say but you want to hear what they say because it just gives you a, a check against what your decisions are and they have made some really wrong decisions that they have had to backtrack because they haven't heard. It's not like they, it's one thing to listen, to hear and then not chose to do what somebody suggest but there's no process for input at all so decisions are just made in a vacuum and sometimes they're very wrong decisions and they have to be undone.
02:35:24:25 - 02:36:54:11 Lisa: Are families feeling disempowered?
Ilene: Very disempowered, I think families are feeling very disillusioned, very angry.
Lisa: And so what is the path forward, I mean how are families and advocates, um, intending to proceed?
Ilene: I don't know. I think we're going to see more litigation in the future than we have in the past. I think we'll be, uh, that's just my prediction. I, I don't' know that. It's not my job anymore, obviously, I'm no longer the head of DRN. I resigned, um, last Oct, last, uh, August as part of my plans towards retirement but I predict that we'll see more litigation. When you don't have a mechanism for people to talk to one another then you have to find some other mechanism to be heard. Um, I think that, uh, there is a lot of anger out there. Um, I think, and a lot of really bad decisions are being made and, and, and it's not all about money. A lot of it's not about money at all. A lot of it are just bad decisions because people don't understand. Somehow and I think this is true of many administrations, people come in to work for government and they don't realize there's a history. That, they're not aware of what happened before them. They think it all started the day they got there and whatever decisions were made before them don't make sense because they don't' bother to find out why the decisions were made, in the way they were made. Um, and so a lot of bad decisions are being made not just because of money but just because of a lack of knowledge. Um, and it's very unfortunate and, uh, you know, people are suffering as a result.
02:36:54:15 - 02:38:33:25 Lisa: We certainly hope that any of these interviews, um, I don't know if you could call it a second wave of advocacy but we certainly hope that it will, if nothing else, get people thinking and perhaps help get them motivated although the lack of services and supports would probably be motivation enough without.
Ilene: I was at, I was at a training for a day, um, for lawyers. We have to take 12 hours of CLE's a year and, uh, they're talking about some issue involving children and I make the statement that, um, after a child ends school, when child turns, for example 21, they lose their rights to everything. They don't have a right to medical assistance. They don't have a right to special education. They're basically without anything and they were absolutely a gassed. These are the attorneys who represent families of children with disabilities and they were unaware of that and I think many parents are unaware of that. That the cliff that they're going to fall off of when their children turn 21. They become aware of it as they get closer to it but, um, and it used to be, up until currently that we had services. Not, maybe not enough, maybe not all we needed but we had something to offer people. Now we have nothing. Kids are graduating school with nothing other than like the TV and what are parents do if they actually have to work for a living and now suddenly they have a son or a daughter at home who needs supervision or care or yeah. One hopes some active treatment but even just to be safe.
02:38:33:29 - 02:39:46:25 Lisa: And I wonder, I mean families are so, um, overburdened often to parents working and then addressing the needs of their child with a disability. It's probably, um, hard to see down the road when your just trying to keep a lid on the day to day. Do you think that's true or...
Ilene: Well, I, I just, I just don't know how we can ignore needs of these families and ultimately it's going to cost the state a lot more money because if you have a single parent who has a son or a daughter with a disability, that person can't quit their job and just stay home. They don't have that option. They may have other kids. They may have a mortgage. They must have food they, they would like to eat the next day. Um, so they don't always have that option and so in the end it's, it's not, it's not going to save society money by not supporting fam... if you support a family and help them keep their son or daughter at home, the tax payers benefit as well as the family, uh, because that's a lot less expensive to help support someone. A person with a disability, I'm talking now with a developmental disability, uh, intellectual disability stay at home than to go, to not and yet if we don't support families which is the direction we're going. They can't stay at home.
02:39:47:22 - 02:40:35:18 Lisa: You mentioned changes to, um, to group homes...
Ilene: Well the current, for reasons that are a little bit technical but, but it's being done in a way that is unnecessarily broad. Uh, they're increasing the maximum size of group homes to eight and that's after 40 years of four, uh, now we have had exceptions to that and the exceptions are part of what's driving this change but the change could be done in a more modest way and they're choosing not to do it. They're using a steamroller where they could use a, something more delicate to make this change.
Lisa: Eight people sounds less like a home and more like a small center.
Ilene: Well, yeah, eight people. It's, it's hard to imagine that to be a home cause remember you have staff on top of that. So it's a lot of chaos.
02:40:36:15 - 02:41:44:24 Lisa: We had talked a little bit about the fact that The DLP and P&A worked in tangent for many years but, um, you did merge, I believe, um, in 2002 and I wondered if you could just tell us a little bit about that process and the new name and what the organizations mission and values are, if they changed at all.
Ilene: We merged in part, um, under, I will call, uh, pressure from the federal government. Heavy handed pride, um, but having made that decision, uh, we decided that we not only merge but we'd have a new name so that it would signify that it was really not one organization sort of eating up the other but rather the two coming together and, and it's actually been a very positive thing because the legal work and the advocacy work are now one. Uh, prior to that you had the legal work over at DLP and the advocacy work at The P&A and now it's all been brought together and there's much more integration between the lawyers and the advocates and that took several years to achieve but I think we're doing really well and moving along that path.
02:41:45:20 - 02:42:58:02 Lisa: Thank you. Um, I wanted to ask you a little bit, we were just talking about sort of a lack of input in the current administration for some of the, the changes that are coming down the pike. Um, but that's not always been the case, I know that you served, um, on the, let's see if I get the title right, please. The Governors Cabinet on Children and Families. There was a commission comprised of experts to..
Ilene: Well, let me, let me rephrase your question if you don't mind.
Lisa: Please do because it was a badly worded question.
Ilene: I think the significant input for people with intellectual disabilities has been The PAC, The Planning Advisory Council and that has existed through many administrations of both parties and that appears to be terminating. I don't know, no announcements has been made but it hasn't met since August and this is December and, uh, it just looks like it's being allowed to fade out of existence and that was one of the few bodies that had people with disabilities, people with intellectual disabilities and families as a majority stake holders and really an opportunity to communicate with the Department. It was a really good body of parents, participants or consumers, um, of family members of people in institutions, providers, um, really counties. A really good mix and it's unfortunate. It just, apparently there is no longer an interest in hearing from families and, uh, participants.
02:44:13:26 - 02:44:41:12
02:44:41:20 - 02:47:19:05 Lisa: Ilene, we were talking about, um, sort of the current state, um, of our system and the undoing of so much progress that we've made
Ilene: Well, my career spans quite a few decades and a lot of administrations, republican and democrat because disability is not really a partisan issue and in all those years, why I have not, why I have often disagreed with decisions the department has made, um, I have never felt the department had a total disregard for people with disabilities, um, I, I was always at least of the impression they were interested in at least hearing what they had to say. Hearing what families had to say. They might not always agree with them but at least they would hear from them and in the end, I had a sense that they would not just abandon them but they, again wouldn't always agree with decisions but it was a sense of, um, some commitment to people with disabilities. This administration, I don't see that. They are not interested in hearing from families. They are not interested in hearing from people with disabilities. They're not interested in hearing from advocates. They're making the decisions almost with total disregard of the needs of people with disabilities. They're really almost treating them like commodities. If they have a two person group home here and a two person group home here, we'll just slap them together and have a four person home because it's cheaper. Um, they, people are being terminated from service, um, and, and in the most abrupt ways imaginable. Things are frankly happening now that I would never have conceived of happening five years ago, ten years ago. Um, the idea that someone would get a letter in the mail informing them that they're going to be out of service, that their services are being terminated. These are people with profound disabilities. What happens to them? One family, uh, in particular, was just notified that their, uh, their, uh, daughter would be arriving home in a taxi cab next week. I have another family, the, the examples are just endless and it just, really horrific things happening and the lack of commitment just doesn't seem to be there. Whatever it was that drove administrations to have some sensitivity to people with disabilities, to give, have some concern about what happened to them. You just don't see that now. Now it's, it's, you know, I almost feel like, I don't know this, no one has said this to me but I almost feel like their, their attitude is these people are just costing us too much money. Is there something we can do to get rid of them or something? I don't mean that in a sense of get rid of them technically but they just don't want to provide the services that people need, to support them.
Families and consumers are absolutely, uh, terrified of where their future is, um, I have a friend who's a parent who, um, runs what's called, run's a service for her son who lives in her home. She was just notified that the rate that she's paid which she uses to pay staff was going to be cut by 50%. Well, she can't survive at 50% of what she has so parents and consumers are very, very scared. Um, they're being subjected to things that they never thought they would be subjected to. Uh, people are coming into the system with, the kids are graduating school with no hope that they're going to get services cause we have no waiting list initiative. Um, people get letters in the mail terminating them from service and then the providers, there's a complete sense of anger and distrust of the providers of, of the department. Um, they are not willing in many cases to even develop programs because they don't believe they're going to get paid. They believe if they get paid this year they're not going to get paid next year. Um, in whether they're right or wrong in those feelings, that's what's out there and there, uh, there's just a complete breakdown of the system. I really think it's sort of spiraling downward and downward. I don't know what's going to happen next.
02:48:40:00 - 02:49:25:19 Lisa: What does it mean to not have a waiting list?
Ilene: Not, not, not funded a waiting list?
Lisa: Not a funded a waiting list.
Ilene: It means as kids graduate school they will go home to nothing. If they have a single parent, what does that parent do? They can't quit their job. They may have other kids, they have a life, they have themselves to support. Number two, you have people in their 70's, 80's, 90's with sons and daughters at home who will not be able to get services. What do they do? Today, a family, uh, yeah, I just mentioned this one cause this came in yesterday. Uh, the one family member is in her 70's, has, is being treated for cancer, uh, the person with the disabilities in his, in his 60's. She can't give anything. What does she do? Where does she go?
02:49:26:20 - 02:49:56:03 Lisa: And if she dies, what happens to her child?
Ilene: Well, that's really an interesting question. Isn't it? I don't know. I suppose one option will be to return people to institutions but that comes at a cost too. The average institutional cost is much higher than the average community cost. It's something like, approximately $260,000 a year per person. So, it's not like that's a freebie to taxpayers. So you not only disrupt people's lives, put them places where they don't want to be and shouldn't be but it's at a great cost, financially.
02:49:57:15 - 02:50:34:28 Lisa: So what has the response, obviously the initial reaction is fear, um, but what is the response been of advocates and families or what should the response be?
Ilene: Well, the families have been doing, rallying. They have been meeting with their legislators. They have been meeting with public officials. Um, but these are things they've always done and in the past they've gotten some pos..., some response. You never get all you want but you get something. Now they're getting no response, nothing. Um, there was a zero waiting list initiative last year and as far as I can see this year, I don't expect there to be a waiting list initiative again. Um
02:50:35:12 - 02:51:27:02 Lisa: So Ilene, I wonder if, um, a sort of a missing piece of this puzzle moving forward in terms of being heard and advocacy is buy in from the community at large and by that I mean people who don't have family members and children with disabilities and if so, how do we deepen those connection?
Ilene: That, that's an interesting question because I don't think the, the average person elected this governor to hurt people with disabilities and I really don't think, um, that the average person would want to see that happen and yet that is what's happening. So what my hope is that we will be able to reach out. Not just to the disability community but to the public and say, is this really what you, is this really what, as a society, what we're about, Um, that we're not going to protect the most vulnerable people. Um, it's certainly not consistent with what the governor told the public and yet it's what we're seeing happening.
02:51:27:25 - 02:51:38:17 Lisa: Do you have any thoughts as to how to, um, make these issues resonate with people?
Ilene: Well, I, I, I, I don't know yet how that's all going to play out, it's certainly one of the things we need to do.
02:51:39:40:20 - 02:53:18:16 Lisa: Thank you. Um, you had such a significant role, Ilene, in your career with so many landmark cases.
Ilene: Thank you.
Lisa: Um, and your advocacy work has been so appreciated by People with Disabilities and families. I know you received the Brighter Futures Award. Um, your peers have recognized you. The Philadelphia Bar Association, I believe, gave you the Andrew Hamilton Award for your public interest work. Um, when you reflect on your career, what gives you the most pride or the most sense of accomplishment?
Ilene: Um, that's a hard question to answer. I mean, certainly individual victories have given me a sense of accomplishment. Uh, I think the people that I have worked with and I feel I've had a role in motivating them to do better and to, to reach further gives me a sense of accomplishment. Um, and I think I've seen the system as a whole move towards a more positive, uh, place. Society moved towards a more positive place for people with disabilities. Uh, and I've, I see a tiny role for me in that. Um, I've loved and enjoyed working with people with disabilities, with families. That's been a terrifically positive part of what I've done and, uh, I've enjoyed that. Um, so I, it's hard to point to a single thing. Um, it's been very exciting to watch reform happen and to be part of that. And, uh, you know, I wish we could keep going. I mean I wish we weren't sort of going backwards now but, uh, it seems to be the case.
02:53:18:25 - 02:53:49:23 Lisa: Do you have any regrets when you look back?
Ilene: Yeah, I wish I had quit working about two years earlier so I hadn't have to witness what I am witnessing now. I really do. It's a terrible thing to say but I, in some ways and as soon as think of the people that can't walk away because they have a child with a disability or they themselves have a disability. They can't walk away. They are, whatever happens it's their life and I feel very sort of guilty I suppose that I can walk away when I see things going as badly as I see them going. Um, I haven't walked away yet so, uh.
02:53:49:25 - 02:54:10:04 Lisa: I was going to say, you, you've announced your retirement but you're still consulting. Will you ever really retire?
Ilene: I will, um, and part of that is for my own personal reasons. I, you know, I have health issues and my own disabilities that I have to contend with so I can't work as much as I used too, be able too. And, uh, so that is something. I will work less. I am working less.
02:54:11:00 - 02:54:52:00 Lisa: Do you have any final thoughts or words of wisdom to share for the advocates who will now come after you, particularly, um, given the kind of dire circumstances they're going to find themselves fighting?
Ilene: Well, I, I, it's, one of the things that concerns me is that I look to the leadership and so many of them are my age or even older and I don't mean just the lawyers but also the parents who are really, uh, the key advocates in some of the, um, participants as well. Uh, a, and I, I just think we need to better train the people who come after us to make sure we're constantly renewing a crop of people who have the passion to fight the fight and the fight goes on, um, because as soon as we stop everything retreats.
02:54:53:00 - 02:55:18:19 Lisa: Do you see any emerging leaders?
Ilene: Sure, sure, sure but, uh, it's hard. It's, you know, back when I started in this field parents had nothing. Consumers had nothing. And, and the passion was just unbridled because they had nothing. Now people have a lot more. At least for parts of their lives and that dissipates a lot of the passion until they suddenly find out. They turn 21 and they have nothing.
02:55:20:21 - 02:55:28:17
About Ilene Shane, Esq.
Born: 1948, Philadelphia, PA
Retired. Formerly CEO, Disability Rights Network of Pennsylvania; and Executive Director, Disabilities Law Project
ADA, Carolyn Clark v Cohen, Disability Rights Network, Disabilities Law Project, Education Law Center, Embreeville, Families, Helen L. v Didario, Olmstead, Pennhurst, Pennsylvania Protection and Advocacy, Philadelphia State Hospital (Byberry), Western Center