MARY DELANEY:
Hello, my name is Mary Delaney and I’m the regional program specialist with INSOURCE, serving the Indianapolis area. I’m on the phone today with John Dickerson, executive director of the Arc of Indiana. John joined the Arc of South Dakota in 1973 and then came to the Arc of Indiana in 1974. John has been the executive director of the Arc of Indiana since 1983. We are going to be talking today about post secondary education programs for adults with intellectual disabilities. John, I understand you’re involved with the committee looking at post secondary education programs for adults with intellectual disabilities in Indiana. Could you tell me more about that committee and what you’re doing?
JOHN DICKERSON:
Well, Mary, it’s an exciting development that was started by families thinking about a whole new future of their son or daughter about careers and the pathway to careers for most of us was college. And so they’re starting to think about this and it’s one of the most intriguing and exciting ideas I’ve been around in my 37 years with the Arc. Ah, we have families now be just beginning to explore “how do we make this a reality?” and we’re very pleased to partner with Down’s Syndrome Indiana to figure out how do we make this, what right now is just a dream, a reality for those that would like to choose it?
MARY DELANEY:
Could you tell me who’s currently serving on this committee?
JOHN DICKERSON:
Well it started, was a brainchild of Tom O’Neil and Tom is a past president of the National Down’s Syndrome Society and his son attends a college program on the east coast. And they had to create this almost out of thin air. And he started talking to other people and began thinking about “what is it we could do?” So Tom then approached Lisa _____, the head of Down’s Syndrome Indiana and then myself to say “How do we start thinking about this?” We brought together folks from Indiana University and ___ disability community several family members. We are folks now interested from Vocational Rehabilitation all beginning to think about what is possible. We also are fortunate to have involved folks from Anderson University that had all on their own started thinking about this and developing it from their perspective as a university then saw people with intellectual disabilities as part of their community. So we have ah we’re having our secondary meeting and just getting started listening to a wide variety of folks including people with disabilities themselves.
MARY DELANEY:
That’s very exciting John. So you’re hearing from families obviously of of adults with intellectual disabilities that they are indeed interested and there is a desire for this type of program. Is that correct?
JOHN DICKERSON:
Oh, tremendous Mary. Down’s Syndrome Indiana hosted a meeting on a Tuesday night in July in Indianapolis and asked in four colleges and universities to talk about this concept and it was it was amazing. Here it was a beautiful summer night, we had families from Ft. Wayne all the way to Evansville driving up with their son or daughter, listening not for a finalized program, not for something that’s all figured out, they just wanted to explore and by my count, we had over 50 individuals with disabilities and their family members there wanting more information about this. So that tells me there’s a large untapped reservoir of people looking for something that offers their son or daughter an opportunity that they haven’t had before.
MARY DELANEY:
That’s fabulous. Are there currently any types of programs available in Indiana?
JOHN DICKERSON:
Absolutely. Part of what we’re trying to do is inventory what’s going on because there isn’t a real good network out there and we think there are some small efforts going on. In the past it’s largely been around people with physical disabilities, but very little has been done with people with intellectual disabilities. But what we first want to do is start inventorying what is, we know through some work from the National Down’s Syndrome Society individual projects around the country and in fact at our fist committee meeting we were able to have Stephanie Lee from NDSS come in and talk to us about what they knew. And there appears to be about 150 different projects that have been started the country, some smaller, some larger but very little has actually gotten off the ground yet in Indiana and we’re hoping this group can stimulate some of our colleges and universities, public and private, as well as IVY Tech to think about this in a whole new way and we believe we’ll probably find out that there’s been some things going on in Indiana but it’s not organized, it’s not readily accessible and most families don’t know how to access or find out what is going on. So we’re hoping we can kind of inventory that and make it easier for folks to understand as well.
MARY DELANEY:
Okay. You mentioned Anderson University, are they looking at a program specifically directed for adults with intellectual disabilities?
ROBERT MARRA:
Yes. They have started the process and are much further along than anybody else and what they are what they have actually started working with their students and beginning to design what a program would look like, that it would involve folks in their in their college, not in a separate building, not somewhere off as a part from the college, but being part of the college experience. And they really approached it in an exciting way. They started off by talking to their students and their students were the ones that told them they thought this was a great idea if and only if their kids were at the college were ___ involved in making this a college experience for the person and student with intellectual disabilities. And so they are now in the process of putting the program together and beginning to look at where they will get funding and the ability to sustain this effort because it’s a challenging time for colleges and universities right now. And we need to make sure it’s sustainable for the student with intellectual disabilities as well as the college itself.
MARY DELANEY:
Sure. That’s exciting though. Do we have any idea at this point what the admission requirements might look like for this type of program? Obviously many young adults with intellectual disabilities aren’t going to be taking the standard SATs or even necessarily receiving a high school diploma, so I know that will be a question that many of our parents will have. What will it take to have their child attend a program like this?
JOHN DICKERSON:
Absolutely. One of the things that we’ve learned is that each of the programs around the country does it a little bit differently and it’s different if it’s a two-year program like IVY Tech or four year college. It may be different if it’s a public university or a private university. Each one appears to set different standards at this point. That’s part of what we’re trying to figure out and look at how we can be realistic for the college and university as well as for the student because obviously the current admission standards won’t work. And most of the colleges set up a special admissions process for these programs and make that commitment to do so. Again, part of our work is coming up with some recommendations because quite honestly when we talk about this with some university and college folks, it just doesn’t make sense for them. They’re making their admission standards higher and we’re talking to them about trying to make this a college experience for most people that helps them on a career pathway. So we’ve got some work to do to explain what we’re trying to do to university professionals at the same time.
MARY DELANEY:
Sure, sure. Now I’m aware that there was a program at Marian College several years ago, is what Anderson University is looking at going to be similar to that or could you tell me, do you know anything about that program?
JOHN DICKERSON:
Anderson University is trying to make sure they develop a program that can be sustained, that is built on manageable expectations for both the student and the college and we want to actually bring in all of the families and individuals that went through the Marian College experience and learn from them. What did they gain from that? What did they see what could have been done better? How could we have sustained that? One of the young ladies I know that went through that enjoyed the social experience more than anything else. And that really wasn’t what they were looking for. They were looking for a pathway to a career and she ended up following in a different career and looking at that as another more meaningful path for her.
MARY DELANEY:
Do we know what types of classes a student might take? Would they be getting some type of certificate or I know you said preparing them for employment down the road or
JOHN DICKERSON:
It’s going to probably be different for each student. We just metatarsophalangeal joint young man named Drew who is going to college. Drew has autism and he’s going to college in Unity, Maine and studying wildlife management. His experience will probably be very different than the next student that comes along. The colleges that we talk to otherwise are really in an exploring mode. They’re not sure who will come in, what their abilities will be and their interests, but it’s clear that to be successful we need to match the interests and abilities and the ability of the college to respond to those and I suspect we’ll see a wide range of people taking some more academic courses, others more courses designed to a specific career pathway and it’s not just, this is the interesting thing, it’s not just, as David Manx said, it’s not just about finding a job, but finding a career that leads you to a wide variety of options, including maybe an entrepreneur and having your own business or being a productive employee in somebody else’s business. So I think that the design is going to be as varied as the individuals coming in and I think the colleges and universities are looking at it and saying, “Wow. Here is a population, if we can figure out how to reach them, we can help deal with the fact that nearly 80% of people with disabilities are either unemployed or underemployed. And it’s not about getting a job or just working at the college in the cafeteria, it’s about using the college experience as a way to a pathway to a career and something that and that’s a whole different resetting of our mind patterns of “what are we looking for?”
MARY DELANEY:
That’s absolutely fabulous. It’s just a very exciting thing that’s happening. I, I know you mentioned there’s other programs around the counter. You mentioned Maine, could you tell us a little bit more about what is currently happening around the country and what other types of programs are out there? How wide spread is this right now?
JOHN DICKERSON:
Well, I’d say it’s an emerging movement. It’s certainly not wildly acceptable to everyone. It is the successful programs start out small. We learned about an effort through NDSS in New Jersey with a family that funded a project to help a university to develop this program. We have a lot of programs in California. One of the frustrating things is there’s no source of keeping up to date on all these programs. So, our latest data’s about two and a half years old. So it’s not been updated for a while but we are finding that there is sparks of interest all over and part of what we’re hoping is that we can bring some of those together so that the individual interested in Indianapolis, Evansville, Ft. Wayne, of looking at this, has some easy access for information, the Special Ed directors know about it and guidance counselors can think about this because I’m sure a lot of them don’t even think about this as a possibility. But we want to learn from these and begin seeing it. Most of them have been started by, like is in our whole history, most of them have been started by a determined parent that says “Huh, I want to make something different for my son or daughter.” And then we’ve seen it encouraged, developed. A parent in South Carolina that said, “I’m gonna make this happen” and he has. So I think it’s starting. There’s a lot of sparks of interest and we hope we can turn that into a steady flame of opportunity regardless of where you live. We’re encouraged right not that federally, thanks to the work of NDSS and the Arc and others on a national level, the higher education act allows for certain federal education grants to be used by students with disabilities including people with intellectual disabilities to get PELL grants and other financial aid. And, that’s an important first step and regs are still being written. It’s a long way from being available but getting this legislation passed was a really key accomplishment.
MARY DELANEY:
And that just ___ into my next question which was obviously most parents of adults with disabilities don’t have a a typical college fund set up like they might have for their typical child so obviously that’s going to be a concern for parents on how they can py for this. So the fact that we are looking for some government or some grants or programs would be very key for them.
JOHN DICKERSON:
Absolutely. There are some folks ah that could do private pay for the whole tuition, but very few. To make this accessible we’ve got to be able to tap into existing college program for grants and aid. We also have started to Vocational Rehabilitation, Voc Rehab for years has helped people with physical disabilities go to college, but they’re never looked at this for people with intellectual disabilities and they are very excited about this. In fact, Mike Hedden, the director of Indiana Vocational Rehabilitation has said to me they want to be involved from the get go of looking at what this can be and how they can assist it because their whole reason for being is careers for people with disabilities and they want individuals with intellectual disabilities to have that college that college experience. Now they understand it’s in its infancy, we’re just getting started in defining it, but if we could get VR, excuse me, Voc Rehab for families that may not be familiar with our jargon, Vocational Rehabilitation to fund this college experience, the credit hours, the support, maybe a note taker just as they do for people with physical disabilities, that would be a huge breakthrough.