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Thursday, April 28, 2011

Hope comes full circle : The Hope Institute takes on autism

By Scott Faingold : April 28,2011

Springfield, IL
In the late 1950s, when it was known as the Hope School for Blind Children, the future Institute operated out of a series of Springfield residences; today it is housed in a 24-acre, state-of-the-art complex near Lake Springfield. Throughout its history, the Hope Institute has remained in the vanguard of care for children with disabilities. Now Winson is joining forces with new chief executive officer, Dr. Mary Ellen Caron – both were appointed this past March – to expand the organization’s scope ever further, not least in its continuing, groundbreaking work with The Autism Program of Illinois (TAP).

Current Hope board member John Jordan has been intimately connected to the Institute since before its inception. It was his father, Dr. Charles Jordan, who started the Hope School in 1957. His older sister, Judith Ann, was Hope’s first student.

“My sister Judy was born very premature, blind and with multiple handicaps,” recalls Jordan, the second-youngest of the five Jordan children. “She was severely retarded, and had seizure disorders. As she got older, my parents didn’t know what to do with her. They looked all around the country and what they discovered was that nobody, anywhere in the United States, had a facility for children with multiple handicaps – being blind and having seizure disorders, being blind and being disabled. Places either dealt with blind people or they dealt with kids who were retarded, but not the combination. My parents ran into some places that were horrific in their treatments: my sister was strapped down into a bed and left there for the day to soil herself because she wasn’t eating properly, she wasn’t acting properly, you know, she wasn’t doing what you were supposed to do by their standards, and children were penalized at that time for it. And here was a child who had no idea what was going on. None whatsoever. So that’s what started it.”

Years of frustration eventually led the elder Jordan to take matters into his own hands. Financing it independently, he opened the first Hope School for Blind Children in an attempt to provide the kind of care that he had found was unavailable to his daughter elsewhere. When it first opened in 1957, Judith Ann was the sole student, but within a few years she had five or six classmates.

Growing up with a severely disabled older sister along with a father driven to forge solutions to her care, but with no professional caregiving background or technical resources, resulted in an atypical upbringing for the young John Jordan, at least in retrospect.

“I wouldn’t say it was bizarre, because I didn’t know any different,” he says now. “When they started the school in ’57, I was only seven years old and I had grown up with my sister in the household for most of that time. Our household was literally an experiment, ongoing. In the years before Hope, it was very emotional at our house, it was a time of, I would say, considerable emotional upheaval. My three other sisters and myself, y’know, were really pretty much beside ourselves.”

One tragic event in particular contributed to the overall upheaval and perhaps added impetus to his father’s mission. “At around the time Hope started getting off the ground, my oldest sister, [Elizabeth] Farr Jordan, who was a freshman in high school, came home one day in her boyfriend’s car and had passed out. And later on that evening she died. Which obviously compounded everything that was already going on in the household. My father was a dentist, and he was a very career-oriented, very, very intense man. And I think the death of my older sister, his oldest child, the golden child….” he pauses, collecting his thoughts. “I think it really spurred him on to make sure that this whole process, this whole Hope School thing, really took off. I think that’s what kept him going when people kept telling him ‘no.’”

“There was a fellow by the name of Maurice ‘Maurey’ Tretakoff, ” John Jordan explains today, “who worked with disabled children in New Jersey at the time. Around 1958, my father contacted him and flew him out to Springfield, to look at the program. So Maurey came out and looked at the facility, stayed a few days, and told my father that he should really just close up shop. Just close it all down and tend to his own business of being a dentist and get out of the mental health business. My father really didn’t take that very well, and he said: ‘Fine, I’ll work on it.’

“So about a year later, my father called Maurey Tretakoff back and said, ‘We’ve made some great improvements, I wish you would come out again and take a look at it.’ So again, Maurey came out, looked at it for a few days and basically told my dad the same thing. He said: ‘You’ve made improvements, but you are really completely out of your field. You don’t know what you’re doing, you really should close your doors.’ And my father looked at him and said: ‘Okay, I believe you. How about if you move here, you set up the program, you run the place, and I’ll find the money for it.’ And within a short period of time, Tretakoff moved from New Jersey and designed the initial program for Hope School. And my father devoted his time and energies to raising money.” Tretakoff became the school’s first executive director, a position he would hold until his departure in 1972.

The kinds of changes introduced by Tretakoff included some clever transformations of the physical environment of Hope. A variety of textures were added to the walls and floors of the rooms and hallways to alert the vision-impaired students of where they were on the grounds at any given moment as well as where they were headed. This idea has persisted throughout the years and is still employed today, even as the Institute’s therapeutic focus has shifted.

“You’ll notice that all the hallways are color-coded,” says Jordan. “In the current Learning Center they use a lot of icons and colors because the kids don’t often understand the written word. The most prominent example is the yellow stripes in the hallways which lead to the yellow school buses. So here we are, almost 50 years later, still using, really, Maurey Tretakoff’s original ideas but in a different fashion.

“All those years ago there wasn’t any program for children like my sister,” he reiterates. “We tried to treat each child as a whole person, not as a freak, not like ‘here’s a blind kid,’ or ‘here’s a kid that’s retarded’ or whatever. Things have changed now, we’ve made great strides with the kids who have visual impairments. Now it’s kids with autism and autism spectrum disorders who are becoming much more prevalent in our society and they are the kids, now, who need the kind of support that my sister once needed, a place where they can live and grow and become the people that they were really destined to be.”

While Hope’s mission to provide resources for children with disabilities has remained constant, the Institute’s founders could scarcely have predicted the sheer magnitude of expansion their little organization would experience over the coming half-century. The Institute currently employs 585 people, more than 500 of them in Springfield. As for the number of kids, the Hope Learning Center in Springfield boasts a current enrollment of 171 children, 127 of whom live on the grounds (the rest are bused in each day from their homes). Hope has also developed a formidable presence beyond Springfield, particularly in Chicago where the Hope Institute Learning Academy – a Chicago Public Schools contract school administered by Hope – is now attended by 321 non-residential students.

As John Jordan mentioned, today only a tiny minority of visually impaired children are being served by Hope, with the Institute’s overall focus shifting largely towards young people with diagnoses on various points of the autism spectrum.

“A lot of the children with autism spectrum disorders who are currently served at the Hope Institute are late-to-treatment individuals,” explains new executive director Winson, formerly chief program officer of The Autism Program from 2003 until her recent appointment at Hope. “We know that if we can diagnose kids early, and we intervene early, that their long-term prognosis is greatly improved. Right now, the average age of diagnosis is four years old. But we know we can reliably diagnose kids as early as 18 months old.”

“Failure of early detection can result in a situation where parents are going down a path that isn’t really going to work for them,” says Caron, who has spent many years as an administrator in the Chicago public school system, most recently serving as commissioner of the Chicago Department of Family and Support Services. “Often, children and families get labeled early on and then they’re on a road that they can’t possibly get off. I think that’s one of the things that Hope has to offer, along with trusting the instincts of mothers and fathers and family members.

“One of the things I really hope that we will be doing moving forward,” Caron continues, “is expanding the knowledge of teachers out in the communities to be able to help children in the regular classroom. Because there are all kinds of children on the autism spectrum and some of them just need somebody to do things in a different way. And I hope that we’ll be able to work with teachers and schools and principals to offer some of what we’ve learned at The Hope Institute in the last 10 years to help them with their practice in the classroom.

“On a personal level,” she adds, “I also think that whenever you go to a new position, you stand on those who went before you. I think Joe [recently departed Hope CEO Dr. Joseph Nyre] has a clinical background that is unmatched, and he worked very hard to move the clinical things forward. And now I think that my educational background is a good one in terms of taking what Joe did with the clinical aspect of Hope and moving that into education.”

“The story of The Hope Institute really started with the needs of one individual and one family,” enthuses Winson. “In the last 50 years that has continued to where we’re impacting the state of Illinois – and really impacting the nation, through some of our federal grants. It all comes down to families and individuals. On an everyday basis this means that we have the Noll Dental Clinic, so families will get dental care; we have vocational grants to support young people who need training in order to join the workforce; a family can get a diagnosis or a family can just come to the resource center and learn about their child with disabilities.”

“People in general are more and more aware of those with disabilities,” adds Caron. “You may not have anyone in your own family who has a disability, or who has autism, but you’re still interested in finding out about it because it’s so much more out in the open than it was in the past.”

It is undoubtedly true, and heartening, that both public perception and quality of care for those with disabilities are on the rise. However, as Dr. Caron points out, there can still be major problems for those trying to navigate the system. John Jordan recently learned this firsthand in relation to the care of his now 63-year-old sister, Judith Ann.

“Hope is only for kids from five through 21, after 21 they age out and go into adult facilities – so my sister did the same thing,” he explains. While there are currently no such services being offered, Hope is, in fact, licensed to advocate on behalf of adults. The license was sought in order to pave the way for an eventual adult facility, as there is an acute awareness that adults with autism are severely underserved. “When they leave Hope, they receive probably 10 percent of the care, the resources, that they were getting as kids,” says Jordan.

“Judy’s been in a variety of different situations over the years, but she had been with the same caregiver for 18 years. Then, almost two years ago, [the agency responsible for her care] removed her from that home and put her in a group home. I spent the next six months trying to get my sister and her caregiver reunited using a different agency and just didn’t get anywhere.

“So I was talking to Dr. Nyre about it one day and he looks at me and he goes: ‘We have this adult licensure -- why don’t we see if we can bring Judy back home to Hope?’ And so, not this past Christmas, the Christmas before that, we went to pick up my sister, with her caregiver, and brought her back under the umbrella of Hope.”

And just like that, Hope’s first child became Hope’s first adult

“Here we are, 50-some years later, and it literally has come full circle,” Jordan continues, his voice becoming thick with emotion. “We were able to move Judy back into the home where she spent the last 18 years. And I mean, you could see the relief on my sister’s face and in her motions. She knew exactly where she was again, she could maneuver through the whole household and she just sat down in her chair and started rocking and started humming, which is her natural behavior, and I looked at her and we all kind of looked at one another and said: ‘You know, my God, this child’ – to me she’s a child, just like she was when I was six, seven years old, – we looked at her and said, ‘You know, this woman, this woman-child, has no concept, has no idea of what she has started, of all the children that she has affected.’ And since the day Hope was started, how many thousands and thousands of kids and families have benefited from this woman, who’s just sitting there and she’s got a big smile on her face, and she’s rockin’ and she’s hummin’ and you know, she wants spaghetti for dinner. It was quite a moment, really.”

Scott Faingold is a novelist, a journalist and a musician. He is currently working on his master’s degree at UIS

Please read more of article/pictures at: http://www.illinoistimes.com/Springfield/article-8585-hope-comes-full-circle.html

The Hope Institute for Children and Families: http://www.thehopeinstitute.us/

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