Fifty years ago, an association was formed called the Kansas Association of Rehabilitation Facilities or KARF. It was created by providers throughout the state of Kansas who were concerned about the lives of people with intellectual and developmental disabilities and their lack of representation and advocacy. At that time there were very few programs available and most individuals were sent to the state hospitals in Norton, Winfield, Parsons and Topeka for services. At one time there were thousands of individuals in those facilities and they were hidden away out of public sight.
In the 1970s, organizations like Tri-Valley were created by parents who were attempting to find a better life for their loved ones other than the state hospitals, and it was they, along with KARF, that fought for the rights and independence of people who were unable to care for themselves. There was very little funding, little guidance, and still only a handful or people with disabilities receiving services in a community setting.
Flash forward 50 years and you can see the results of what those families and KARF, now called InterHab, fought for. Norton and Winfield state hospitals were closed in the 1990s and there are now hundreds of community providers across the state. Home and Community Based Services (HCBS), a Medicaid waiver service, was brought to Kansas and thousands of individuals were able to receive community placement.
The battles did not end there as there was a need to create regulations to guide services and with it was born the Developmental Disabilities Reform Act (DDRA) of 1995 that created 27 Community Developmental Disability Organizations to oversee services, eligibility, quality assurance, etc. InterHab was instrumental in working with providers and state legislators, many of them from southeast Kansas, including Speaker of the House Tim Shallenburger of Baxter Springs and Representative Ed McKechnie of Pittsburg. Tom Laing, former InterHab executive director, remembers that the hearings were unlike any I have attended, before or since. Advocates and SRS staff sat as a participating audience, asking questions, making comments when called upon very little in the way of formal testimony was given, instead, the principles in the audience were asked to offer comment throughout the committees deliberations, out of which a final draft was presented to the full committee and then to the floor.
Shallenburger had made the DDRA a priority during the legislative session and when it eventually made its way out of the legislature there was only one dissenting vote. It is unlikely that a major piece of legislation would garner only one dissenting vote in todays political climate.
INTERHAB, now with over 40 agency members, continues its fight for those less fortunate. Eight years ago, it obtained a one-year carve out from KanCare for I/DD service providers, and led, although unsuccessfully, a bid to carve us out of KanCare permanently. For years, it has fought to reduce the statewide waiting list of over 4,000 people and continues to put pressure on the state to permanently eliminate it. Over the past three years, InterHab led the charge in creating legislation that provided a rate increase for all HCBS service providers, including those with physical disabilities and mental health issues. If there is an issue that affects people with intellectual and developmental disabilities, InterHab is there. In addition to strong advocacy efforts, the association also provides needed trainings to its members, an annual conference and weekly updates.
Fifty years seems like an eternity in our field, so much can change in such a short period of time that you have to be on your toes at all times. With the advent of managed care, government overreach, and other issues facing disability providers, it is nice to know that there is a state organization out there helping advocate for people who are less fortunate than ourselves.
