Governor faced hospital decision with care, compassion

Faced with the challenging and emotional situation associated with the state’s responsibility to care for thousands of Kansans with various disabilities, there really wasn’t any way for Kansas Gov. Mark Parkinson to come up with a plan or solution that would please everyone involved.

However, the state is fortunate to have a governor such as Parkinson, who made a special effort to examine every facet of the situation before arriving at what he thought was the best way to deal with the matter.

It is doubtful many Kansans have any idea of the time the governor devoted to investigate the perplexing situation. Evidence of the governor’s deep interest in this matter is contained in a blog he posted earlier this week outlining how he went about gathering information about the Kansas disability situation.

In his very detailed blog, the governor noted Kansas has operated a number of institutions for people with various disabilities for many years. The state has the School for the Deaf, School for the Blind, psychiatric hospitals and two institutions that house Kansans with developmental disabilities: Kansas Neurological Institute in Topeka and Parsons State Hospital. There are 158 residents at KNI and 191 in Parsons, all with severe developmental disabilities.

Parkinson pointed out these residents are only a small fraction of the number of individuals with developmental disabilities in Kansas. Kansas also provides services to approximately 7,000 other Kansans with disabilities who live at home or receive community-based services. In addition, at least 3,000 more Kansans need services in the community but the state does not have the funds or space to take care of them. These people are on a waiting list.

Parkinson’s study was prompted by former Gov. Kathleen Sebelius’ creation of a commission to study whether the state should close any more institutions in Kansas. Winfield State Hospital, which housed 250 residents, was closed in 1998. This action fell in line with the growing trend throughout the country, and in Kansas, to deinstitutionalize people with disabilities. Some in the Winfield facility were transferred to KNI or Parsons, but most were cared for in the community.

The Sebelius-appointed commission recommended that KNI be closed and its residents moved either into community services or to Parsons. Some agreed with the recommendations, and others objected, leaving it up to Parkinson to decide to accept or reject the commission’s decision.

In his blog, the governor noted there has been a national trend to transfer people out of institutions and help them find services in their communities. He said most knowledgeable people say the least restrictive environment is best, so community care is preferable to institutional care.

He noted cost is an issue. According to Parkinson, the cost of caring for a resident in KNI is about $149,000 a year, while the cost of a person receiving services in the community is about $41,000.

The governor pointed out that deciding whether to accept or reject the commission recommendation was extremely difficult. He knew his decision would directly affect the lives of the most vulnerable residents of the state through no fault of their own. The families of these residents love the care and treatment of their loved ones at KNI and Parsons. Each institution employs more than 500 people, and they are worried about their jobs. There are 3,000 Kansans on the waiting list for community services but receiving none.

Parkinson decided this issue needed intense study, so he committed himself to find out as much as he could about the pros and cons of the matter. He met with representatives of community service programs and toured KNI, met staff members, watched and talked with residents and met with family members. He said he was “overwhelmed with emotion from the visit,” “overwhelmed by the residents,” whom he described as “wonderful and need our help,” and “overwhelmed by the passion of the families.”

He met with state officials, visited Parsons and visited a Topeka group home that is home to eight men, one with cerebral palsy, one who could not speak and another with Down syndrome. Regarding this visit, he said, “It is impossible for me to express how moving this was, and yet, that was just one of thousands of interactions, just as moving, that takes place in all these settings every day.”

He spent “countless hours” reading everything he could to learn about the institutions and the trend to deinstitutionalize. He then made a list of what he had learned:

l “The trend to community services makes sense.”

l “Some, but not all, of the residents of KNI and Parsons are appropriate for a community setting.”

l The state does not “have the capacity right now to immediately close either facility.”

His decision was to reject the recommendation for an immediate closure of KNI. He called for a phased reduction in the populations at both KNI and Parsons and asked that the state tighten its admission guidelines. He wants annual reports on how the state is dealing with deinstitutionalization, while at the same time, “making sure we do it in a way that protects those most impacted.”

Wrapping up his blog, the governor said, “our waiting list is shameful. … we have at least 3,000 Kansans who need services but are not getting them. … There is no excuse for this. … Each of these people is not just a number. It’s a person that God created and that we should care for. … As proud as I am over the care we provide for those receiving it, I’m equally disturbed by the number who receive no services.”

He ended by saying, “So, while I know that many will not support the decision that I have made, I hope this blog provides you some insight into the reasons for the decision.”

Whether people agree with Parkinson’s decision, whether they are Republicans or Democrats, and no matter what their thoughts may be about the best way for the state to serve residents with disabilities, Kansas is fortunate to have a governor who feels so deeply about the plight and challenge of those touched in one way or another by those institutionalized with serious disabilities — as well as the more than 3,000 Kansans on a waiting list for care.

Parkinson devoted a tremendous amount of time to studying the situation, asking questions, talking with clients and their families and learning as much as he could about the situation.

A governor cannot spend this amount of time on each and every issue that reaches his or her desk, but Kansans should be grateful and appreciative of the concern Parkinson showed on this serious matter.

Since assuming the governorship, Parkinson has set a high standard for his successor and other public officeholders to try to match.