An Interview with Toni Lippert

[Ed Skarnulis] Hello, my name is Ed Skarnulis.

Today I'm interviewing Toni Lippert, who is senior planner with the Metropolitan Council Office of Developmental Disabilities. Toni is a past president of the Minnesota Association for People with Severe Handicaps. She is the parent of a daughter with a handicap, and has been involved in the field of developmental disabilities here in Minnesota for a number of years.

It's been my good fortune to spend time in different states and when I've done that I found that in almost every state there's one person who stands out and is universally recognized as a leader, someone who helped to bring things to where they are. Toni Lippert is that sort of person. If you were to interview professionals, parents, and others involved in the field of developmental disabilities in Minnesota, I think you'd find that there would be general consensus on that point.

She sincere, she's humane, she cares very deeply about what's happening to people with special developmental needs.

[Toni Lippert] My daughter Mary Loretta was the second of six children. When she was about four years old we began to see, my husband and I began to suspect something was wrong with her because she seemed to be lagging in her development behind my third child, and there was just no place that I could go that would give me a yes or no answer as to what was wrong with Mary, and it was almost four years before there was any kind of a decision or any kind of professional opinion that Mary was mentally retarded, and that they thought she was just mildly retarded. Turns out she's profoundly retarded and she has other handicapping conditions.

And the fact that these services and the constraints that our family was under during that period made me really want to improve the situation for other people like Mary, and for their families, and so that when I had time after my other children entered school I began as a volunteer working with the then Department of Public Welfare on some of their committees, one of which was having parents have a say in the planning and decision-making for
their child, which up to that point was not really a policy, and…

[Ed Skarnulis] What year was that? What point was it?

[Toni Lippert] That was about 1970, and I was asked to help write some kind of a policy statement with some of the staff at that time, and then soon after that I joined the … or right about that time I joined the Association for Retarded Citizens in Minnesota, and saw that as a natural alliance of parents who were trying to better the situation for their sons and daughters who are mentally retarded, too, and then I saw that the only service that was available which was the State Hospital at that time, for parents who could not, did not have the coping skills or the ability or circumstances at home to keep their children at home, I saw the situation there was so deplorable that I wanted to work for its improvement and I became active with the Association for Retarded Citizens and one thing led to another,

(I) finally entered with a little hesitation, because I was trained to teach English in secondary school but I began to feel I do as much as many of the people who were so-called professionals in the field, and I was encouraged by others to take a job at the time when group homes were developing for mentally retarded people, and I applied for the job and got it, and subsequently this opening at the Metropolitan Council Developmental Disabilities Program came and I applied for that job and I've been there for 15 years.

[Ed Skarnulis] One of the things that happens is that parents get characterized with kind of a broad brush by professionals as being incapable of understanding, and yet your experience was that you reached the point where you know more, at least, about your daughter and your daughter's needs than a lot of the professionals. What can parents do to overcome some of that minimization of their capabilities? How can they assert themselves in the face of professionals who have all the good housekeeping seals, and all the power?

[Toni Lippert] I think this is an extremely good time for them to start to become assertive. First of all, there is much more information available for parents to learn more about the nature of the developmental disabilities and its consequences, and there's also another tool that I think is extremely good for those whose children or family members are receiving case management services, and that is, under the Minnesota Regulation Rule 185, the person who is mentally retarded or developmentally disabled, and/or that person's family are the primary decision-makers, so number one, they now have statutory authority to make the primary decisions, but they have a corresponding responsibility, I believe, with that right, to learn all they can about their child and about what constitutes good services and a good service system.

[Ed Skarnulis] This is a tough one, but if you had it to do over again, what would you do differently?

[Toni Lippert] Well for one thing, I still churn when I think about how passive I was. When my daughter… we visited my daughter for the first time… when we placed her as the only alternative for staying with the family, I couldn't at that time because of health reasons in my family, we placed her in a state hospital, we were not allowed to visit her for one month, and when we did come and visit her, she was totally brutalized. She was beat up, black and blue, scratches, puffy eyes, it was horrible, and my husband and I didn't say anything because we had anguished so over making that decision, that we were afraid, we were intimidated to even ask any questions.

We finally got up our nerve at the following visit with Mary a month later, and we were told, well, she's assaultive to others and they hit back. I would never do that again, I now… when I feel that there's something wrong I ask questions, I challenge, and I know my rights, and I think as far as advice, the thing to do is for parents to know what their rights are, for them and their children. I think that's one of the things I would do over again is to learn with my rights are, and my child's.

[Ed Skarnulis] You know, there's a Cat Stevens song that says something about, you know, we've come a long way, and where do the children play, but where are where are we now, I mean have we come so far, are conditions so superior that parents that are younger don't have to worry about the things
that you were talking about, the conditions that existed in the fifties and the sixties, the snakepit conditions?

[Toni Lippert] I think the contrasts are much more evident, I mean there are some, what I would guess, what I would call some tremendous contrasts. There are still contrasts, but they're more subtle now, and I think that parents who are receiving services now, and who are complacent about them, are really going to suffer, or I should say their children will in the long run.

I think we still have a long way to go, I don't think in situations such as I've just described, where there is physical abuse and assault, we're not even out of that yet, when we have in our system in Minnesota today people who are receiving, for addicts, in shock treatment, many times an hour, every hour of the waking day, then I say we're not out of the woods yet about physical assault yet, but I believe that those young parents have got to be ever vigilant, have got to be continually learning and striving to improve even what they think is great right now.

I remember when Lou Brown was here he said that so many people who depend on specialized facility, special education, ICFM, our group homes, and so on, as the best models of service for their children are wrong. The only two things that we are going to protect our kids are advocacy and the law, and we have got to be very, very cognizant of how ephemeral those things can be, how changes can creep in, and how we always have to be concerned. I don't mean to the point where we become unable ourselves to cope with everyday situations, but I do think that one of the ways to keep abreast of what's going on is to belong to some kind of an organization, that is an advocate-oriented organization that really has the consumer's welfare and well-being as its foremost goal.

[Ed Skarnulis] If you were to if you were to name some of the people, not just in Minnesota, outside Minnesota, who have made really dramatic contribution to the field over the last couple of decades, who were some of the people who come to mind?

[Toni Lippert] I recall it very early when I came into this field as a paid worker instead of a volunteer, reading an essay by Burton Black, called "Christmas in Purgatory," by which he described the situation in the state institutions at that time, and I had seen some of that in our own institutions, not quite as devastating as he described it, but I thought then this is not just happening here, it's widespread, and that bothered me
even more to think that this was it's happening nationwide. It hadn't occurred to me that this was the standard, the national standard of service treatment, for people who were severely retarded, or who are otherwise disabled.

Another person I think about, sixteen years ago I had the good fortune to hear Marc Gold, he came to Minnesota and he showed slides to an audience
of parents at the State Hospital at that time, people who had IQs below 30 as they were tested, and I qualify the term, IQ score.

[Ed Skarnulis] Why do you do that? Why do you qualify that?

[Toni Lippert] Because I don't think there has been a test devised that can unwrap the ability of a person who is non-verbal or who cannot communicate in the ways that you and I communicate. There is no assessment instrument at this point to do that and so it would be just like our assessing someone in an English test or spelling test who did not speak English. We're not using the kind of instrument that can truly measure what that person has… the ability that person has.

But anyway, I saw him, he showed slides of their ability with simple verbal prompts, no, simple physical prompts, and modeling or imitation, assemble a 13-part bike brake, and that to me was absolutely astounding. These are people whose IQs, so-called, were below 30.

Another person who really changed my life was Doctor Lou Brown. When he came, about seven or eight years ago, to run Minnesota, and showed some slides and told the story about students he had in his classes who were labeled severely cognitively impaired, who were working in jobs is as they were in school, and with supervision, and were really able to do jobs that you wouldn't even believe they have the so-called potential, that's another loaded word, to achieve, and they did, and I've said this before, and it's worth reiterating, Lou Brown made me realize for the first time, and we use that term community integration all the time and it's become a cliche, but for the first time, when Doctor Lou Brown showed those slides, and told the story about the students he was working with, for the first time I realized that people with severe handicaps will live in an integrated society, and it's our job not to ask whether they will, but how we can make it happen.

So he was another one that really impressed me.

Some of the people engaged in supporting employment who I've had the opportunity to hear or bring to Minnesota also impressed me. I'll never forget a presentation that Tom Bellamy, Dr. Tom Bellamy, gave at the first many as the Minne ASCU Inaugural Conference in 1981, and he also had been doing work with very handicapped people in employment, and subsequently Dr. Paul Weyman, who is another one of the leading professionals in supported employment, and his total commitment, total belief, that our young people, our middle aged people, our working age people who are severely retarded are able to
work.

And the thing that has been inhibiting them is not their lack of innate ability, but their environment that is, the stimulation, study, the lack of training and competency of the staff who surround them, the low expectations of the people who make up their every day contacts, all of these ideas have stimulated me and made me think about the way we are currently serving people with severe handicaps and the way things ought to be. It's quite a contrast.

[Ed Skarnulis] You like words, and you've made your living from words, at least in the past few years. I've read many of the documents you've written, and words are important to you, their connotations, their meaning. Let me let me give you some words, and I'd like your response to them, okay? Wolfensberger.

[Toni Lippert] I'm glad you mentioned Wolfensberger. He was another one, and I should have mentioned him. Wolfensberger came to Minnesota and talked to us about normalization.

[Ed Skarnulis] Why don't you say who he is? What does he stand for?

[Toni Lippert] Well, Wolf Wolfensberger, I think came out of Syracuse, I'm really not sure, at that time he was at Syracuse…

[Ed Skarnulis] He actually started at Peabody in Tennessee, he worked in an institution there.

[Toni Lippert] See, I'm not as familiar with these people, but I know…

[Ed Skarnulis] He's German and has a heavy German accent.

[Toni Lippert] Yes, but he came and he was another one, and really so often the people who have been the leaders like Wolf Wolfensberger do have a tremendous charisma, and it's something that comes from having a real belief that things can be better. And Wolfensberger was the epitome of that kind of a leader in the field, and he took the term normalization, which it actually coined I believe in the Scandinavian countries, but he took it and brought it, and did one of the most thorough explications of that concept in an excellent book, and one of the things he talked about (was) that normalization implied… now  normalization, of course, being that we were to try and make the environment, and the schedule, and the associations, and the activities of people who are mentally retarded meet the same kind of norms and standards that are used by people who are not handicapped.

But one of the things, the subtitle of his book is Normalization, something about human management, and that phrase used to bother me, always, until I read his book, and one of the things he brought home to me was the fact that we do, in fact, manage people who are so limited in the ability to direct their own activities and express their preferences and he made a great and beautiful pitch for approaching this service that we do with great humility, because we are in fact managing other lives and we must always be cognizant of the responsibility that places on us.

And that concept, normalization, caught on all over America. I think it was probably one of the foremost factors that one of the driving forces that led to the deinstitutionalization in bringing people from hospitals and institutions back to their communities.

[Ed Skarnulis] Another word that was very popular here in Minnesota few years ago was the word continuum, a continuum of services. Do you want to address that?

[Toni Lippert] Yes, what we meant there was we thought of it in terms of the way people learn, children, adults, starting from learning some basic facts and then after we've mastered the skills and behaviors that are necessary in that set of abilities, we go on to the next more sophisticated, more complex level, and so on and so forth, and so we applied that to the service system here in Minnesota.

For example, I can remember being guilty of developing a continuum of residential services in which people went from a state hospital to a group home, and from a group home to semi-independent living services or apartment training, and then semi-independent living services. What we got trapped by, though, was that we made an assumption that the people who were in one level were going to learn all that was needed to get to the next level.

In other words, they had to learn and earn their way into the next level, and we found that, in fact, people were not moving out of the level in which they were placed, and thereby they were trapped. In other words, we fell into a very, very bad situation where there was no movement, there was no progress, people were not moving through the system in an ever more increasingly complex level of achievement. They were trapped wherever they were placed, and so we had to rethink that idea of the continuum.

It still is valid, it's just that like so many things, the concept is valid but the way we implemented it was erroneous. And again it goes back to my concern, or to my very strong feeling that there are more handicaps caused by the environment that surrounds the person, and what goes into that environment, attitudes and lack of awareness and skills on the part of the people who surround of them, than are due to the person's handicap itself.

[Ed Skarnulis] What's happening with self advocacy in Minnesota? Are people with handicaps beginning to do that?

[Toni Lippert] I think they are. I think one of the things that is characteristic of lack of more progress, and it's probably characteristic of the advocacy movement in general, is that it's fragmented. I mean we have about four or five different groups who are self advocates, we have groups, and even among those self advocates, people who are not intellectually impaired. Their interests and needs differ, or the priority needs differ, quite a bit from those people who have who are mentally retarded.

For example, people who are physically handicapped but have no intellectual impairments, one of their main priority goals is to get jobs and to get an adequate transportation system in Minnesota that'll allow them to get to those jobs and become more self-sufficient. The priority need for people with intellectual impairments is transportation in employment but that's not their priority need.

I personally think that the priority need for self advocates there is to make their choices known, and to have us learn to respect those people as fully human beings, and that's just as a focus on the disability, and disregarding all the other human values that they represent. They have a need for love, for social acceptance, they want privacy, they want some control over their own lives.

We don't look at it that way, we look at them as something to fix with that focus on the disability, so the self advocacy movement is fragmented.

It's gaining, I do I still think it's gaining. I think of one of the hardest things with the people with severe handicaps as far as self advocacy, and I believe that can happen, is that the caretakers, parents, and people who serve them don't think they are able to express themselves, and they are able to express preferences, whether it's by turning away or some kind of body language

Even if they're not verbal, every move they make is an expression of like or dislike, happiness or fear, or discomfort, and we have got to learn that they too can advocate for themselves and recognize that group.

[Ed Skarnulis] Let me, for a moment, play devil's advocate with that one. One of the things parents say to you all the time is "Toni, you don't understand, you don't understand what my child is like. You may think your child has severe problems, but my child really has severe problems. Toni, my child is happy where he's at right now. Why can't you and other parents like you just leave him alone where he's at? Now you can call it an institution but I know he's happy there, he's been there for a lot of years, why can't you just leave that alone?"

Legislators say, "Toni, that's all well and good, but don't you understand we can't afford to continue to have more and more and more services. At some point we have to say, 'We've gone as far as we can and we're just going to have to draw a line.'" How do you respond to all these objections to all the things that you're saying?

[Toni Lippert] Well, let me answer the last point first and that is with regard to the reason the diminishing resources, not only remaining the same size, but as I see it in today's world, diminishing resources for Human Services.

I really think and I'm convinced that the new ideas which I call state of the art principles, and the practices that have evolved from them, are more cost effective and I think we can serve more people because I think we are just going to have to learn to use and to adapt generic resources rather than constantly build a separate specialized system to take care of all our needs, or all the needs of people who are handicapped.

And what's beautiful about right now, Ed, is that we have more data collected, more documentation today, than we have ever had, because these young people who are coming now with these new ideas in developing these new practices have gone the scientific route, and they documented their findings with data, so we have not only good data, but we have the largest amount that we've ever had as evidence that these practices can be cost effective.

To your first query about what do I say to parents, that's a tough one, because although I think that I have a situation that's difficult, I never try to second guess those parents. If they say that their child is happy and satisfied where that person is and they're happy, it's very difficult for me, except I guess I would have to remind them that unless they are exposed to some of these other situations where they would have more contact with other people where they might have more opportunities for seeing people who are not handicapped other than their family and paid staff, or people who are always in positions of authority, parents or staff are always telling them what to do that they really don't know how much more satisfied, they don't know that their child or they won't be more satisfied.

You see, what worries me about this is that the people who are saying this about being satisfied really have seen nothing else.

They don't have a whole array of experiences upon which to base their conclusion.

There's something in, and even if they are totally satisfied, there something in all of us that's always looking for improvement, and to stifle that I think, is being… I don't care about them, but I really it's not being fair to their children, the people who are in those situations. I can't believe no matter how difficult it is for us to assume that people who can't talk, walk, who can only express themselves by facial gestures, perhaps, or even moving an eyelash, can react positively and negatively to their environment, but they can, and we don't know, we don't know what it would mean to them to be able to control that environment.

Maybe when everybody is doing something, they might prefer to be alone for a while, or they may prefer to do something else, but they never had that opportunity, So naturally they're going to seem satisfied, and I think it's the same with our children who aren't handicapped, to say that they're going to grow up and they're going to go into a certain job and that person is happy doesn't necessarily mean that that person couldn't be more than what they are , and I think we owe that opportunity to our children who are handicapped.

Let them speak both other ideas and other kinds of satisfaction. I don't know if any of these your question but it's a hard one.

[Ed Skarnulis] I think the what it does do, is it answers the question of what your thrust has been, your emphasis, which has been always on the individual, and so it's hard for me sometimes I know to talk systems and to extrapolate from the individual, but if you could, just reach a little bit and tell me where you think we're going. Where is this going to go?

If you were to conceptualize the person with the most profound level of disability as we know it today physically, behaviorally, intellectually, and take a child and adult, where are they going to be 20 30 40 years?

[Toni Lippert] As long as we take it out that far, I guess I'll do a little futuring, and guess I'll say that the child will be play in the playground before their school age with other kids, and their parents will talk to the other parents, and those parents of non-handicapped children will see that the parents of both children love their children, and those little children who are very handicapped can show and express happiness at being outdoors, near and in playing, and being with other children, and the same thing is going to happen in schools. I think those kids will be in the regular school, they'll be going to their neighborhood school. I'll never forget my daughter Miriam knew she was different, because she could not go to the same grade school my other five children went to.

And she constantly, without being able to verbalize, showed that feeling of being different as a negative feeling all the time, and by golly in the future they're not going to break up families and send one kid to a segregated specialized school.

That child can go to the neighborhood school and the support, the modifications, the arrangements, the assistance that that child, and that teacher, and that classroom needs to accommodate that child are going to be provided in their school.

As that child grows to adulthood, in fact before they leave school, that child's going to have exposure to several different kinds of employment, tasks they can do while they're still in school, so that that child gets, as a student, gets some feeling for, not just dishwashing, but a variety of jobs that they might be able to do upon graduation. I think that they will be going up on the stage and graduating with the other kids who are not handicapped, with the other students. They'll be accepted, they'll be attending the prom, but there are problems in 20 years, or the equivalent, and in some way even partially participating in that event.

And for adults, I see associations being made, personal support networks being developed between their workmates. I'm talking about extended beyond the family, between people they meet in civic associations.

They're so many community organizations that an individual can participate in, and I'm not talking about having bosom buddies or close friends, but just that association and acquaintanceship with people who are not handicapped will benefit both the person who's handicapped and the person who is not, because that person who is not will recognize the human qualities and see that there are more commonalities than differences in people who have handicaps, and the people who are handicapped will be able to find enjoyment in reciprocal communication, and that association.

That's what I see for the future and that's what I want to work for.

[Ed Skarnulis] Thank you. I think at this point I'm going to wrap up this interview by just making a few comments, and that is that I said before every state is fortunate enough to have one or two people who provide the leadership and the tenacity necessary to move a state forward.

Minnesota is among the top states in the United States in terms of its total expenditure on people labelled developmentally disabled.

More importantly, Minnesota seems to have a value system that cherishes and preserves the integrity of the magic number, the number one.

I think that it's because of the tenacity of people like Toni Lippert, who for years have stuck to it, and have persevered to help us have the kind of certain service system we have today. Thank you very much.