Approximately 50 years ago, Bonnie Burr and her husband knew something wasn’t quite right with their elementary school-aged daughter. But nothing could have prepared them for the doctor’s words.

The family was told she likely would never surpass the developmental milestones of an eighth-grader, and that eventually proved to be true.

Back then, there wasn’t any local help or resources for developmentally disabled children or adults, other than large, in-patient institutions. But her daughter’s condition wasn’t severe enough to require that level of treatment, and the family never would have wanted that lifestyle for their child anyway, she said.

“They called them retarded then, and I was told that she was retarded,” Burr said. “I really didn’t know anything about that sort of thing, except they kept them out of sight and you didn’t have anything to do with (them). And I knew I couldn’t do that. We couldn’t do that.”

That’s when Burr began her role as an advocate for the developmentally disabled, first convincing the grade school principal in her community at that time to offer special education classes, and then helping to establish services in Atwood that are now part of Developmental Services of Northwest Kansas.

That agency provides a wide variety of community supports for individuals with intellectual or developmental disabilities in 18 Kansas counties. It also celebrated its 50th anniversary last week with a balloon launch, a dance with live music and birthday cake. A public tour of the Reed Center in Hays also was offered.

Burr, who lives in Bird City, has been on the agency’s board of directors for the last 50 years. Her daughter died in 1983, but Burr has continued to advocate as a way to honor her memory.

And the improvement she has witnessed not only in her daughter, but also the many others receiving help, has made the effort well worth it, she said.

“Lives have been so different for so many … that they just blossom,” Burr said. “They came to Atwood, and they would walk along and look at the cement. In a few years, they were talking to everybody and smiling. It was just a different life for them, and I’m so happy that we were able to do that.

“I think those institutions must have been awful.”

It started with family

Long before community-based services were the standard of care, families like Burr’s across northwest Kansas began coming together with a common desire. They simply wanted services for their loved ones that could help their lives be as fulfilling as possible. Independent, grassroots efforts had popped up in Hays, Atwood and Hill City, and those continued to expand throughout the early '70s.

By 1976, several communities had joined to form what DSNWK is today — a regional agency providing support, care and resources to individuals and families in need.

“It really started with families,” said Steve Keil, director of development at DSNWK, based in Hays. “A group of families here in Hays (and throughout the region) always wanted to have some services for their children.”

The organization’s growth was furthered when the state began shifting from institutions to community-based care in the late 1980s. DSNWK then began expanding the programs available in the Hays area, also extending into Russell and Norton.

The agency was ahead of its time by already providing community-based supports and programs years before that service model became the standard, said Jerry Michaud, president and CEO of DSNWK.

“It was kind of cutting edge,” he said. “Kansas for many, many years was kind of the (leader) for developmental disabilities.”

The agency today serves more than 500 people, and offers a variety of services ranging from 24/7 care at numerous group homes to daytime programs that strive to provide education, enrichment and life skills.

DSNWK has eight service locations throughout the region, including developmental centers in Hays, Russell, Norton, Hill City, Hoxie and Atwood. It also provides early intervention services for infants and toddlers in six counties, and operates the Access public transportation service in Hays.

Independent living supports also are available for those who can be capable of living alone, and DSNWK also has helped many people find successful employment. The agency currently serves 149 people who are employed by 125 businesses throughout northwest Kansas.

One such individual is Robert Skeers, who has received supports from DSNWK for many years. He has his own place to live, and takes pride in being able to work within the community.

“I like to make some money, and I’m a good worker,” Skeers said.

A major change over the last five decades has been a transition of many consumers from internal business opportunities — such as an in-house sewing shop — to employment within the communities.

“Businesses began to kind of open up, and our people began to move into those competitive arenas for employment, which is just exactly what you want to see people do,” Michaud said, “to progress and get the skills to be successful, just like anyone would want for their own children.”

Today, DSNWK frequently receives calls from area businesses who are wanting to employ individuals they serve, Keil said, noting many of their employees are hard-working and loyal.

“The truth of the matter is we have employers that call us looking for employees, because they have positions that are difficult to fill, and they also know they will get an employee who will be dedicated and have longevity,” he said. “Just last year, we had a gal who got an award for 30 years of employment, and she was a dishwasher.”

More employment opportunities and greater community acceptance has even made it possible for some individuals receiving services to successfully own real estate, Keil said, noting that would have been unheard of 50 years ago.

The agency also employs approximately 350 people throughout the region, with an estimated economic impact of more than $9 million.

IDD service organizations in Kansas have faced challenges in recent years due to largely flat state funding, but the anniversary provided an opportunity to reflect on all the progress achieved over the last several decades, Michaud said.

“Let’s just say it’s a complicated path to follow,” he said of the current climate. “But it’s still rooted in our mission, which is to help people to navigate their community. And the amazing story about 50 years of developmental services is it’s the people serving the people, helping others to be stronger in their skill set and independence.”