Into the Light
Reprinted with permission
from La Crosse Magazine. June 2003
Story by Cary Heyer, APR

In 1973, a cease-fire was signed to end the involvement of American ground troops in the Vietnam War. The median household income in the U.S. was $10,512. And an enterprising, mop-topped social worker began a journey that would have more twists and turns than a handful of licorice whips.

Thirty years later, the events of the conflict in Vietnam have been consigned to the pages of history. A then-comfortable household income would today relegate most families to poverty. And Don Heidel, the man who co-founded the Chileda Habilitation Institute, is still there, though his hair is a little thinner and respectfully trimmed. But now, even the name of the organization that he leads has changed: it is simply known as Chileda.

Despite formidable challenges including state and federal budget cuts, ever-strict licensure guidelines, greater competition from other healthcare agencies and now, an impending move off of the campus of Franciscan Skemp Healthcare, Chileda continues to thrive. From a humble genesis it has become a national model of care and treatment for children and young adults with developmental disabilities.

In 2003, as Chileda observes its 30th year, there is reason for hope and celebration.

Modest beginnings
"Once upon a time and not long ago, kids who had autism spectrum disorders were literally warehoused in large state institutions," said Heidel, Chileda president and CEO. "Their care was provided by well meaning matrons whose job was to maintain a semblance of order in a ward of 35 kids." These overworked caregivers provided the basics-three meals, a warm bed and a roof over their head-but little or nothing to help the kids grow or learn.

As a social worker fresh out of graduate school, Heidel worked in Stevens Point and was part of a state program that tried to find homes for hard-to-place children. Not surprisingly, many of these youngsters were developmentally disabled. During this experience, Lee Dreyfus, then-chancellor of the University of Wisconsin-Stevens Point and former Wisconsin governor, introduced Heidel to Dr. Rayma Ditson, a UW-Stevens Point professor of child psychology. Ditson shared Heidel's interest in youngsters with special needs. Recognizing a kindred spirit in each other, they created a groundbreaking program for children with developmental disabilities. Soon, Rolf Sommer, who would later marry Ms. Ditson, joined them as program director.

Their first assignment as a team? To choose a name for the fledgling agency. Together, they chose "Chileda, a Cherokee word that translates to "onward and upward," or "into the light." It is a motivational message that is most appropriate for the child with developmental disabilities.

Chileda was launched on June 16, 1973 in Stevens Point with four kids, one staff member, a telephone, a used typewriter and lots of ideas. Although the staff was small in number, the vision was broad and ambitious. Soon the word spread that a special program was being developed solely to help youngsters with multiple handicaps, autism spectrum disorders and related maladies. No one could predict how popular the program would soon become.

A new home...and a caring community
News about Chileda spread quickly via a network of social workers, state and government agencies, teachers, parents and others who are charged with making decisions about the care and treatment of those with special needs. Referrals came faster than Chileda could handle them. The space at the UW-Stevens Point dormitory that housed the growing agency was restrictive and the cost of the lease prohibitive. So Heidel began searching for a new home.

He found it in La Crosse, where Franciscan Skemp Healthcare welcomed it as part of its growing medical campus.

The reception was tremendous. Buses of children and staff were met with the enthusiastic cheers from representatives of the Diocese of La Crosse, Franciscan Skemp Healthcare, the St. Rose Convent, Viterbo College (now Viterbo University), community leaders and the media. Clearly, La Crosse was honored to be selected to serve these children and Chileda was happy to be here.

Despite the warm welcome that the agency received, the early years in La Crosse weren't devoid of challenge. In fact, Chileda was nearly forced to close its doors.

Shelly Lamb-Vosen, vice president of development, joined Chileda in 1980. She said that the sweeping federal budget cuts to social service programs threatened Chileda's very existence. "At that time, Chileda was relatively new to La Crosse. There was no way to gauge how much support we could realistically expect. We were prepared for the worst."

To Chileda's surprise, and to the relief of parents who entrusted Chileda to care for their children, the community rallied to its aid. Today the organization, and indeed the children who call the organization "home," continues to benefit from the generosity of those who share the agency's philosophy that every person deserves to be treated with honor and mercy.

An honorable commitment
Chileda serves children and young adults who have developmental disabilities due to closed head injuries, behavioral and genetic liabilities, seizure disorders, cerebral palsy, autism and physical handicaps. These special individuals come from across the nation, from bustling metropolitan areas to quiet communities.

The agency's staff is licensed to provide care for 42 individuals in an intensive, caring treatment program. Chileda works closely with social service agencies, education and legal professionals, parents and other concerned individuals to assure that the special needs of each client are met.

Although each plan is tailored to meet the needs of each client, three words serve as the framework for every child's program of care and learning: dignity, respect and compassion. Chileda's 150-person team shares the opinion that all residents have the capacity for growth and development, and that each child has the potential to be a productive member of the community.

This belief is expressed in Chileda's mission commitment: All children and young adults who receive support from Chileda will develop skills in functional, adaptive behaviors that lead to successful community involvement.

In short, Chileda's goal is to make clients as self-sufficient as reasonably possible. "It is a lofty goal," Heidel said. "But you can't win the game if you sit on the sidelines, right? We owe it to these kids to give them a chance to play the game, to do what we can to help them realize their full potential and give them hope for a bright future."

A care provider, a classroom, a home
As a residential care and treatment center, Chileda provides each child with an atmosphere that is supportive of his or her habilitative and educational needs.

Dr. Kirby Lentz, vice president of operations, says that it is essential to create an environment that each child can recognize as home, where there are accommodations for individual preferences and where personal possessions are valued. Lentz says that an environment that is friendly and warm promotes learning and mental development.

Visitors to Chileda will find many of the same amenities found in other homes: a kitchen, laundry facilities, playrooms and living areas. Individual bedrooms are decorated by the kids themselves. Like many schools, Chileda has special education classrooms, a computer lab and a gymnasium; speech, physical therapy, occupational therapy and medical areas. When the kids aren't in the classroom, they listen to music, play games, participate in sports and watch TV.

Group and individual activities are designed to hasten social skills, strengthen physical abilities and enhance cognitive aptitudes that aid the child with academics and vocational training. "Games, sports, hobbies and socialization-all the activities associated with leisure time," Lentz says, "play a pivotal role in personal development, whether you're talking about children with special needs or those in the mainstream."

A national model
Though Chileda's beginnings were humble, it has adopted a leadership role and effectively positioned itself as a national model of care and treatment for children with developmental disabilities. In 1990, Chileda was named one of George H.W. Bush's "Thousand Points of Light." It has received the Franciscan Healthcare System's "Spheres of Influence" award in recognition of its exemplary commitment to the key Franciscan Health System values of dignity, trust, service and teamwork. Chileda's innovative use of personal computers as a hands-on learning aid was also highlighted on ABC's "Good Morning America" program.

In 1995, Heidel volunteered to put Chileda to the test by participating in a rigorous process that earned it national accreditation from the Accreditation Council for Quality and Leadership. The process, which included a self-study that lasted many months, a three-day site visit and a comprehensive review of 30 standards in 10 key areas, affirmed Chileda's competence. Chileda was the first organization in Wisconsin to achieve that status, and one of just 54 nationwide, making it quite an honor.

Since then, Chileda has continued to be on the forefront of knowledge about autism spectrum disorders. Chileda staff members have written articles for a variety of trade publications and are regularly called upon to speak at national and international forums, including the International Conference on Mental Retardation and Developmental Disabilities, the International Conference on Positive Behavior, and the National Conference on Autism Spectrum Disorders.

"We truly have a world-class staff," Heidel said. "When Chileda staff members attend a conference in Orlando or New York or San Francisco, people know who they are. We are very fortunate to have such high caliber talent right here in La Crosse."

Innovative approaches to treating autism
Over the years, staff members have tried new ideas and innovative approaches as part of an ongoing pledge to find what works best for each client.

Examples of the creative approaches that have been explored at Chileda are Project TEACCH (Treatment and Education of Autism and related Communication for Children with Handicaps), and PECS (Picture-Exchange Communications System), which use pictures to communicate with children who have limited or no verbal skills. Chileda has also examined the benefits of Facilitated Communication, which allows children with autism to communicate through assisted use of a computer keyboard, and AIT (Auditory Integrated Training). This radical treatment bombards an individual's ears with electronically distorted music for an hour a day for 10 days in an attempt to desensitize the hearing of children with autism who might have more sensitive hearing.

Working with Chileda and UW-La Crosse, Gundersen Lutheran audiologist David E. Palm, Ph.D., facilitated the first-ever controlled scientific research on AIT. While no long-lasting improvement was observed on behalf of children receiving the therapy, Palm said he was still impressed by Chileda's commitment to find new ways to help these children. "Chileda has always expressed a willingness to explore every avenue if it has any potential at all for helping these kids," he said.

William Deering, MD, a pediatric neurologist formerly with Franciscan Skemp Healthcare, agrees. "They (Chileda) are not only helping kids in La Crosse, they can disseminate this information so that people don't spend thousands of dollars a year on techniques that will not change anything. This is a real public service."

Indeed, Chileda's location is one of the reasons that it can participate in such innovative research. It is housed in a 21,000 square foot facility on the campus of Franciscan Skemp-Mayo Health System near downtown La Crosse. Viterbo University, a liberal arts college founded in 1890 by the Franciscan Sisters of Perpetual Adoration, is also one of its neighbors. In addition, Gundersen Lutheran Medical Center, Western Wisconsin Technical College and the University of Wisconsin-La Crosse are all within two miles of Chileda's doorstep.

Heidel is quick to acknowledge Chileda's dependence on these local institutions.

"They're more than professional colleagues. They're dear friends. Each is part of our extended support network. They offer guidance, provide facilities-based resources and share their expertise." It is only through their participation, Heidel says, that Chileda will continue to take advantage of the latest medical advances and be apprised of the new educational strategies that will benefit those whom the organization serves.

Preparing for the next 30 years
While Chileda enjoys the neighborhood in which it currently resides, the expansion of nearby Franciscan Skemp Healthcare prompts the organization to find another house. Heidel says that the time is right for a move.

During a series of strategic planning sessions last year, four organizational priorities were identified for Chileda: facilities, human resources, partnerships and communication. With the increasing incidence of autism-the number has grown four-fold in the past decade, the growing number of children with autism who survive past infancy and the continued popularity of the Chileda program, these planning sessions clearly illustrated that expanding Chileda's current facility was the agency's foremost priority.

Perhaps it is a blessing that the strategic planning sessions coincided with the groundbreaking of the addition to the medical center next door. Some might call it divine intervention. Heidel calls it something else: serendipity.

"Everything happens for a reason. If we hadn't gone through the strategic planning exercise when we did, who knows how long we would have struggled at our current location? This move will serve as a catalyst for bigger things, for Chileda and our community," Heidel said.

Anticipating this day, Chileda began to purchase land for a new building on Ferry Street between Ninth and Tenth Streets, just a couple of blocks from its current Mississippi Street location. "It was critical to stay in the same terrific neighborhood. Fortunately, we found property that was for sale just a couple blocks away," Heidel said with a smile. "See...serendipity!"

He said it's an ideal location to continue to build on relationships with Franciscan Skemp Healthcare and Gundersen Lutheran. Its proximity to Viterbo University, the Health Science Center, Western Wisconsin Technical College and UW-La Crosse is also an advantage to those Chileda serves.

Design plans for the project await final acquisition of necessary land, but the new facility will be designed to fit in with existing homes in the neighborhood and enhance the quality of life of the area. The size of the facility will double from the current 23,000 square foot, single-floor configuration to a two-story, 45,000 square foot structure.

Most importantly, it will be designed with consideration to the expectations and knowledge of children with developmental disabilities. "Lighting, color of paint, size of the rooms, height of the ceilings...all have an influence on the comfort and success of children with disabilities," Heidel said. "The new building will also have specialized learning centers and more private rooms."

He concedes that it will be a challenge to raise the $6 million needed to build a new home. Ever an optimist, Heidel is confident that Chileda will succeed.

"We've faced some difficult times. But the challenges we face as an organization pale in comparison to those that kids with autism deal with every day," Heidel said. "If a kid can smile in spite of being blind, unable to speak or brush his own teeth, we're confident that we can raise the money we need to provide these kids the home and school they deserve."

To learn more about Chileda, visit their Web site at www.chileda.org. Or better yet, call Don Heidel at 782.6480, ext. 224 and ask him to give you a tour. You'll discover 30 years of magic-and an experience that will change you forever.

There is a light.