Isolated and Neglected in an HCBS Community Living Home

An appeal to Kentuckians who have adult loved ones with severe and profound autism

By Ann Pierce

The Medicaid HCBS (Home and Community-Based Services) waiver program in Kentucky is failing my 33-year-old non-verbal daughter with autism. 

She has an easy-to-follow Plan of Care which meets her simple needs, such as keeping a supply of white men’s tube socks for her to wiggle and unravel into string balls. (Unfortunately, her provider’s staff, tired of vacuuming string balls, took away her socks.) 

But the failings and list of cruelties is endless. My daughter’s scratching-from-distress behaviors, described by staff as “attacks” and “bullying,” have turned into everyday hopeless sobbing. She is miserable.

Our state needs several reforms to address the needs of adults with severe and profound autism.

We need to provide training and certification for caregivers specific to severe autism. The state requires special training and certification for many, much easier jobs. This training should not be left to individual providers whose understanding of autism is limited to stereotypes.  

Pay should be commensurate with the challenges of the job. Caring for people with severe autism is much more difficult than caring for people with other disabilities, even other developmental disabilities.

Also, Support for Community Living homes are dangerous and isolating for non-verbal residents. My daughter has a long list of incident reports. She has suffered serious bruising which is not taken seriously by investigators because she is non-verbal and there are no witnesses. We need much stronger protections for people as vulnerable as my daughter.

Tragically, there is no appropriate alternative housing. We need a group setting to provide accountability for staff, but more extensive than these small, isolated community homes. A campus or farm-type setting would be better, like Bittersweet Farms in Ohio.

I would very much like to brainstorm with others on these issues. I know we are all overwhelmed from advocating for our children, but maybe with group support we will have the energy to advocate for the very specific needs of our severely disabled loved ones. Our affiliation with NCSA would further our cause.

I strongly encourage fellow Kentuckians who are touched by severe autism to sign up for NCSA’s National Grassroots Network. It only takes a few minutes. We will be setting up a Zoom meeting just for Kentuckians soon. 

Working together, we can make a better life for our children.

Ann Pierce is the mother of an adult daughter with severe autism. She lives in Kentucky. You can reach her by email here.