Cedar Lake and the Home of the Innocents, two of Kentucky’s largest nonprofits serving our most vulnerable citizens with intellectual and developmental disabilities who have intense medical needs, are forging a partnership to deal with a crisis within our agencies.  In May of 2012, our agencies began discussing the lack of available resources in the community for children aging out of the Home of the Innocents and for adults on the Cedar Lake waiting list that face limited options to meet their intense needs.

With limited options and the state’s ongoing initiative to reduce the usage of “intermediate care” beds, our organizations have had little choice but to place these individuals in psychiatric facilities, nursing homes, and, at times, back home with their families.  All of these choices have devastating consequences because of the lack of appropriate staffing and expertise to deal with chronic medical issues and intense daily nursing support required to maintain a true quality of life for these individuals.

The Home of the Innocents shared an alarming statistic: more than 30 percent of children aging out of their facility have severe negative outcomes, including death, within 18 to 24 months due to the lack of available resources in the community – and Cedar Lake’s waiting list for these critically needed services has grown to 8+ years, leaving aging parents to care for their significantly disabled sons and daughters at home.

Over the last several years, Kentucky has made a strong effort to shrink the size of its public institutions to keep pace with the Department of Justice’s (DOJ) national movement to reduce or close large facilities in favor of smaller, more integrated settings.  Because of the DOJ’s effort, Kentucky has reduced the usage of its Intermediate Care beds from 977 to less than 500.

The good news is that hundreds of individuals previously living in institutions are now living meaningful lives in the community; the bad news is that there are nearly 500 unused beds in inventory – with no plan to reassign these beds to those who desperately need them.  The beds in inventory are the type of beds that children aging out of the Home of the Innocents and individuals on the Cedar Lake waiting list need to live safe, healthy lives.  And while these beds are more expensive than community waiver beds in the Supports for Community Living Waiver program, the Intermediate Care bed offers more robust support, complete with 24-hour intensive nursing care.  Unfortunately, the waiver program does not provide the financial resources needed to fund adequate care for people with intense daily nursing needs.

THE SOLUTION:  4-BED INTERMEDIATE CARE HOMES IN THE COMMUNITY

The answer to this ongoing and growing problem is for Cedar Lake to expand its Intermediate Care services in a unique way.  But to do so, we would need to create a new housing option that would satisfy the DOJ’s emphasis on smaller, more integrated settings.  After years of research and planning, Cedar Lake has developed Kentucky’s first-ever 4-bed Intermediate Care Home so that individuals with intensive nursing needs can fully integrate in neighborhoods in the community.  This vision has required much planning and cooperation from the Cabinet for Health and Family Services (CHFS), planning and zoning, neighborhood developers and a consultant for the DOJ.

To make a very long story short, we received approval from CHFS on our innovative Intermediate Care home design; we received approval from Oldham County Planning and Zoning to build two homes in the Sycamore Run Neighborhood in LaGrange, Kentucky; we secured changes to the Deed of Restrictions to allow for the construction of this type of home in the neighborhood – and we received notice from an expert on DOJ matters that building these homes would not create any issues for the DOJ.  And to make things even better, Kentucky’s current State Health Plan allows for the transfer of beds from one facility to another. Both agencies will be working closely with the new Bevin Administration to seek their approval of our request for the expansion of additional ICF beds to support Kentucky’s most vulnerable citizens.

To keep up to date on Cedar Lake’s new 4-bed Community ICF, visit our website at www.cedarlake.org

– Chris Stevenson is president and CEO of Cedar Lake.