Shawn Voss is invisible. The daily struggles of the 26-year-old Hays resident with autism occur far from the political spotlight of the Kansas Statehouse.
Shawn isn’t able to voice his frustrations and hopes, as he has lived his life largely unable to communicate with others. The few who can understand Shawn have learned how to listen by dedicating months to understanding how he communicates.
The small circle of people who understand Shawn includes his direct support professionals. They are the trained staff Shawn relies on for such daily needs as eating, bathing and going out.
In the 1970s, Kansas committed to developing community-based services for people with intellectual and developmental disabilities (IDD). Communities became more welcoming places for people like Shawn. In recent decades, the state lost its focus on these important services and funding stagnated.
Due to the underfunding, turnover among direct support professional positions has reached crisis levels. Shawn has lived in a home for two years with four roommates who also have disabilities. Shawn has experienced a revolving door of staff. Shawn’s mother, Diane, says Shawn has new staff in his home about once a month. New staff don’t understand his needs or wants. While he is good-natured, Shawn’s struggles to communicate with new staff frustrate him.
He is one of the more fortunate Kansans with IDD. Shawn receives services. Thousands of other Kansans have waited years for that same opportunity. Since the late 1990s, the Kansas waiting list for IDD services has grown to more than 4,000 Kansans. Many have waited close to a decade. These Kansans are invisible, too.
It’s time for legislators to recognize them. Significant efforts are needed to repair the problems caused by neglect.
Policymakers and communities must work together to identify how to serve them. IDD service providers need to be involved as they plan new staffing, housing and other resources.
First, we must stop the current situation from getting worse. Without a viable workforce, Kansans with disabilities like Shawn will increasingly experience the turmoil of losing trusted caretakers. Shawn deserves to be supported by professionals who understand his needs. He deserves to wake each morning without finding unfamiliar faces in his home.
IDD service providers are hard-pressed to offer competitive wages comparable even to entry-level fast-food restaurants. Job seekers who consider becoming a direct support professional face a choice: They can provide direct care that includes bathing, toileting, feeding, lifting, dressing and attending to people with IDD, or they can make the same wage at another job with less of a personal commitment. The direct support professionals in Shawn’s home who stay do so because they believe in the importance of the work but often pick up additional jobs to make ends meet.
In 2020, legislators can address these issues. Services for Kansans with intellectual and developmental disabilities must be a priority. Funding gaps must be addressed. A responsible plan for eliminating the waiting list must be devised. These Kansans have been invisible long enough.
Shawn’s parents hope Shawn can be comfortable in his own home surrounded by quality staff who understand his needs. Shawn’s parents want him to be part of his community and enjoy his life. They hope for a brighter future, because they know they won’t always be there for Shawn.
Their greatest fear is that Shawn will remain invisible.
Matt Fletcher is executive director of InterHab, the state's largest advocacy entity on behalf of Kansans with intellectual and developmental disabilities.