Caring for individuals with Down syndrome

Cedar Lake senior leadership breaks ground on new intermediate care home

Cedar Lake senior leadership breaks ground on new intermediate care home

One of the main concerns of expectant couples when they learn their child has Down syndrome is “who will help care for our son or daughter?” In the United States, it is humbling to find out how many will help care.

A diagnosis of Down syndrome brings it with concern of whether the child will be able to care for him- or herself and who will care for the child after the parents are gone. The latter is particularly a concern of older moms, who are more likely to give birth to a child with Down syndrome.

How comforting it would be for these expectant parents to know that:

there are people who get up every morning and whose job and mission is to care for individuals with Down syndrome.


In Kentucky, where I live, one of those organizations who employ dozens to care for individuals with Down syndrome and other intellectual and developmental disabilities (I/DD) is Cedar Lake. I serve on its board and through that service have become aware of the commitment to care for individuals whose parents worry if anyone will be there for their loved one.

Cedar Lake started in 1970 as an effort by a group of concerned families to provide a quality residential option for their loved ones with I/DD. From building the lodge, which has dozens of residents, Cedar Lake has expanded to providing community residential options, whose residents far outnumber those at the lodge.

In an effort to provide a smaller setting for individuals whose medical needs still require the heightened level of care provided at the lodge, Cedar Lake opened a smaller facility, which houses only 16 individuals with I/DD.

Cedar Lake has continued with its innovative delivery of residential options by breaking ground on the first Intermediate Care Home in Kentucky.

I attended the groundbreaking where remarks were made by Cedar Lake’s senior staff about this new option that will be available in 2016 once construction finishes. The Intermediate Care Home will be a home like any other home in a typical neighborhood, but it will meet regulatory, staffing, and safety requirements for its residents’ heightened medical needs.

As exciting as this new residential option will be–and it is exciting, placing these residents in the community where their neighbors will come to know them as fellow neighbors–I was equally excited as a realization dawned on me while listening to the President & CEO, the VP of Operations, the VP of Fund Development, and the Chairman of the Board all delivered their remarks:

Each of these individuals get up every day to serve the mission of providing high quality care to individuals with Down syndrome and other I/DD.

Network of care

Cedar Lake staff and residents take part in the groundbreaking ceremony

Cedar Lake staff and residents take part in the groundbreaking ceremony

If you haven’t had an introduction to the network of care providers for individuals with I/DD, you likely are completely ignorant of this network of compassionate care givers. So too are most expectant parents when they receive a prenatal test result.

They don’t know of:

  • Early intervention therapists, who provide speech, OT, PT, nutrition, and developmental intervention in the home until the child reaches three years of age;
  • Early education programs where teachers and aides prepare children for entry into the school system;
  • Special education teachers, inclusive education trainers, in-classroom aides, and speech, OT, and PT therapists in the school system to help the child through formal schooling;
  • Job coaches, vocational/rehabilitation staff, and employers who provide job skills training and then the jobs themselves to individuals with I/DD as they age into adulthood;
  • Behavioral, PT, OT, and other therapists who work with adults who attend day programs;
  • The hundreds of local parent support organizations with staff and volunteers dedicated to supporting individuals with Down syndrome and their loved ones; and,
  • The direct care professionals, managers, vice-presidents, CEOs, board members, committee members, and volunteers who enable residential providers to provide a range of residential options to fit the needs of the individual with Down syndrome or other I/DD.

I don’t know how anyone can know of this range of support available across the lifetime of individuals with Down syndrome, unless the person makes an effort to volunteer, research, or simply visit this network of care providers.


All of this is not to say it’s a perfect system with perfect services and perfect personnel. If it were, it would be the exception to every single human effort ever known in human history.

But with that limitation noted, I hope reading this and seeing the people turning a shovel of dirt may impress upon you how many people devote hours, workdays, months, years, and, for many, their lives to making the world better for individuals with disabilities.

Hopefully that will provide some comfort to the expectant parents worried about the future for their child.

And, hopefully for everyone else, it may cause you to seek out one of these care providers, visit them, and maybe pitch in and help make the world a more caring place.

Cedar Lake staff & board members join in the groundbreaking ceremony (your author at right)

Cedar Lake staff & board members join in the groundbreaking ceremony (your author at right)

Local news channels covered the groundbreaking ceremony. Here is the video from WAVE-3, the NBC affiliate: News, Weather


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