There's no place like home - a haven of comfort, security and familiarity. While the Hope Institute for Children and Families has been providing a home to children with developmental disabilities for more than 50 years, the nonprofit is preparing to break barriers by creating a child-centered medical home at Noll Medical Pavilion. With health-care reform in the news, Brian Allen, vice president of Healthcare Partnerships at Noll Medical Pavilion and retired president/CEO of the Mental Health Centers of Central Illinois, believes that now, more than ever, the medical home model and approach are needed.
"If you have an excellent medical home on the front end, there will be less cost on the back end," Allen says. "It is more efficient and clinically effective."
The premise of the child-centered medical home model is that care that is managed and coordinated by a personal physician will lead to better outcomes.
Developing a personal relationship between the primary care physician and the patient, as well as between the physician and the family of the patient, is another key component to the model, in addition to employing a team approach in which a multi-disciplinary health-care team provides a system of care that is both comprehensive and coordinated for the patient. It can include primary care, psychiatry, mental-health therapy, dental, vision, developmental/autism therapy, occupational therapy/ physical therapy/speech therapy, etc. This model not only allows for a greater sense of familiarity and security for the young patient, but also allows for expanded access to care, and higher-quality care.
The Hope Institute for Children and Families, formerly the Hope School, has been breaking barriers since its creation. A nonprofit center, Hope provides education, residential and health services to children ages 5-21 with multiple developmental and physical disabilities. In the 1950s, an era marked by both idealism and innovative thought, the yearning for social change, especially regarding civil rights and the treatment of the physically disabled and developmentally disabled, was evident, especially for a young Illinois couple. Dr. and Mrs. Charles E. Jordan, a young dentist and his wife, felt a responsibility toward revolutionizing the lives of the developmentally disabled. In 1957 in Springfield, they took action and made history.
Driven by their love for their 13-year-old daughter, Judith Ann, who was born developmentally disabled and blind, and frustrated by the realization that no school in the United States would educate her, the Jordans created a tiny school from a modest home. They gave Springfield and the rest of the United States the Hope School, the first school in the country that embraced and educated children with multiple disabilities, and they gave disabled children and their families a precious gift - something to hope for.
"My father had a drive to make this work," says John Jordan, the fourth of the five Jordan children, Judith Ann's younger brother and a current Hope director. "In 1957, if your relative was disabled, they were largely pushed aside," but Dr. and Mrs. Jordan dreamt of education and more opportunities for their daughter. While Judith Ann was their first and only student in 1957, in 1958, Hope expanded to two homes, and in 1964, it relocated to its 26-acre campus, employing 14 staff members, serving 28 children and giving hope to families of disabled children across the country.
A haven for disabled children, many of whom were blind, the Hope School was groundbreaking in the 1950s and 1960s. Staff members focused on helping the students learn basic living skills and pushing them to reach their full potential, and Hope began to grow. More than 50 years later, the Hope School has evolved into The Hope Institute for Children and Families, primarily serving children with autism spectrum disorders and other developmental disabilities. What was once a simple school housed in a small home has become much more.
The Hope Institute for Children and Families, 15 E. Hazel Dell Lane, now encompasses a 26-acre campus. It's home to the Hope School Learning Center where the students attend class; the Hope Center for Residential Services, which includes dormitories and group homes for the children; and Noll Medical Pavilion, which is leading the way in integrative health care for children with developmental disabilities and mental illness in Illinois.
Hope Institute Learning Academy, a Chicago state-of-the-art public school that opened in September 2009 is also part of the institute that focuses on embracing diversity by educating both disabled and non-disabled children of all learning styles and abilities in the same classrooms and fostering responsible inclusion.
Housed in a 51,000-square-foot building, Noll Medical Pavilion, 5220 S. Sixth St., is becoming a center of innovation. The building, purchased by Hope in 2007, was an adjunct building to Doctors Hospital, which closed in 2003. In May 2008, Lincoln Prairie Behavioral Health Center, specializing in the treatment of mental illness in children and adolescents, opened in the former Doctors Hospital. Noll Medical Pavilion was not far behind, opening its doors a month later in June.
"Hope bought the building Noll is housed in 2007 with the intention to create a medical home," Allen says. And like the Hope Institute itself, Noll is changing, progressing and making history.
The changing face of Hope
In addition to medical innovation, Hope is offering educational innovation to its students. The progress Hope has made, and has allowed its students to make, since 1957 is exciting, Jordan says.
"Hope was groundbreaking in 1957, and today, it is groundbreaking in the field of autism," he says. "I think if my parents were around to see it today, they would be overwhelmed."
With more than 500 dedicated staff members who have been certified in special-needs training, a board of directors and a board of trustees, the Hope Institute and its students have a strong support system, and it only continues to grow, change and affect the rest of the country.
"Hope has certainly helped public policy develop," says Dr. Joseph Nyre, Hope's president and CEO, "and this is largely a result of Dr. Jordan being appointed to President Kennedy's presidential committee" on employment of the handicapped in 1962. In 1974, schools became required by law to serve children with disabilities, and today, Hope is attempting to push special education a step further by influencing schools across the nation.
"There are charter schools that are opening in New York and California," Nyre says, "but they are schools that only treat autistic children. The schools need to focus on inclusion with non-disorder kids, though, and that is what HILA is trying to accomplish and promote."
The idea of inclusion, not only in schools but in the community, is something that Hope stresses, says Libby Rambach, a retired District 186 special education teacher heading into her fourth year at the Hope School.
"We are working toward independence with the kids," Rambach says, "and our goal is to provide support but not foster dependency. Ideally, we want the kids to eventually be able to leave the Hope campus."
While most students are prepared to transition from Hope, either to a group home or back into the community, from ages 17-21, staff are constantly fostering independence in the students and pushing them to reach their maximum potential from the moment they enter the school.
Staff and teachers work with the students on basic living skills, such as getting dressed, hygiene, saying hello and goodbye, communicating emotions and moods and telling time and the ultimate goal of helping students progress and accomplish as much as possible.
"The bottom line is the kids," says Principal Cliff Hathaway, a retired District 186 administrator and special education teacher. "What we do here affects their whole lives, and it's important to make sure their lives are as normal as possible and that the goals we set for them are high enough. While Hope was once a private, residential school thinking inward, now we're a private, residential school thinking outward."
While most of Hope's students attend school on-campus at the Hope School Learning Center, Hope is working on implementing two classrooms at the Edwin A. Lee Elementary School, where students will learn in a regular educational setting, in addition to adding two more classrooms to their Lakeshore (Hazel Dell) campus in partnership with District 186. In the two Lakeshore classrooms, a Lee Elementary School aide and a teacher will work to transition six students, who are having difficulty learning in a regular public school classroom, back into the public schools they were originally attending, Hathaway explains.
Another way Hope is thinking outward is by employing innovative teaching and therapy methods that will help students master daily tasks and help them express their feelings and communicate. In 2006, Nyre helped Hope obtain a grant for a music therapist, and Rachel Rambach was a perfect fit.
"I got really lucky," she says. "I was finishing up my graduate school internship (for music therapy), and Libby (Rachel's mother-in-law) told me Hope had received a grant for music therapy."
By allowing students to learn by singing and playing instruments, Rachel Rambach is able to connect with the children in a different way and reinforce what their teachers are working on with them, she says. She writes her own songs and creates CDs for both parents and teachers so students can keep learning through music even on the days she does not meet with them. While teaching youths of varying learning levels and abilities can be difficult, she says her job is more fun than anything else.
"My job is so much fun," she says. "Music helps to create a level playing field for the kids; its universal, and it's something that everyone can relate to, no matter what their ability."
Teaching handicapped and disabled children involves a large commitment from Hope's teachers and staff, but what is most evident among them is their dedication, faith and love for their students, and the hope that Hope will help the children have satisfying and fulfilling lives.
"You have to love what you do here," says Libby Rambach. "This is not a job; it's a way of life, both for you and for the kids ... I love seeing them have the chance to reach their full potential."
The future of Hope
The Hope Institute for Children and Families is certainly breaking both medical and educational barriers, and within the last 10 months, Noll has made some remarkable strides. In March 2009, Noll Medical Pavilion received two grants to further the development of the medical home, in conjunction with the Mental Health Centers of Central Illinois, a Memorial Health System affiliate, and Southern Illinois University School of Medicine. MHCCI received a $50,000 grant from the Illinois Children's Healthcare Foundation in efforts to assist in establishing the "medical home" at Noll, and also to help integrate behavioral health assessment and services into primary-care clinics operated by the Southern Illinois University School of Medicine.
The second $20,000 grant was awarded to Hope by Blue Cross Blue Shield of Illinois to continue to expand access to comprehensive, coordinated high-quality care to children with developmental disabilities. Both grants are currently being overseen and implemented by Allen, who also is responsible for directing the implementation of the medical home concept at Noll.
The Hope Institute for Children and Families, along with MHCCI and SIU School of Medicine, makes up the Children's Healthcare Partnership at Noll, which has been instrumental in the development of the medical home. In February 2009, the Children's Healthcare Partnership proposed legislation seeking to advance the medical home idea at Noll, and in August 2009, HB 3641 was passed, allowing for a "medical home" pilot program.
"The medical home concept is becoming more supported in health-care reform," says Dr. Janet Albers, director of SIU School of Medicine's Center for Family Medicine. "There are grant opportunities and reimbursement opportunities there, and I think Hope and the Children's Health Partnership are in a good position to get some of the larger grants. It's exciting."
At this point, Noll is at 80 percent occupancy, housing psychiatrists' and mental health specialists' offices, along with some vision services provided by Gailey Eye Clinic, and the headquarters for The Autism Program, the largest statewide autism program in the United States.
A dental clinic housed in Noll is under way, with Allen estimating it could be ready to open as soon as February or March 2010. Integrating primary health care, provided by SIU School of Medicine, in the near future is another goal.
While combining services to create a medical home is complicated, cost is another aspect that must be taken into account. While the organizations and partners that work with Hope offer sliding fee scales, most of the patients Noll serves, and will serve in the future, are covered by Medicaid, which does not pay well.
"We're mostly not-for-profit, where the profit we get goes back into the services we provide," Allen explains, "but we still need to make some profit to cover our basic costs. It's a challenge finding dollars right now, especially with the bad economy, but there are grants and opportunities out there. I'm optimistic - we're making incremental progress, and we're awfully close."
So what's next for Hope?
For now, Noll and the medical home concept may be works in progress, but one thing is certain: The future appears to be bright.
"This is too important to not happen," Albers of SIU says. "We all want Noll to be a center of excellence for children with developmental challenges. It's progressing, and health-care reform will support it."
It's no time to be timid, Hope's principal believes.
"We need to reach for the stars," Hathaway says, "and not just think about where we were, but where we are and where we could be."
Want more info?
For more information on the Hope Institute for Children and Families and Noll Medical Pavilion, visit www.thehopeinstitute.us.
Read The State Journal-Register's Hope Institute story published on Dec. 22, 2009:
Story published Friday, December 4, 2009 ( Volume 4, Number 7 )