Hope comes full circle
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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.”
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