I want to introduce you to Matt. Matt is 52 years old and is a thriving adult with mild mental disability. He currently lives in a residential home with two other adults with similar disabilities who all receive 24-hour care from a nonprofit serving individuals with intellectual disabilities. Two nights ago, Matt woke up in the middle of the night complaining of his belly hurting and wanted to go to hospital. Because Matt fears doctors, staff at his home knew this must be serious. After a six hour hospital visit and a lot of coaching him through x-rays and tests, he was diagnosed with aspiration pneumonia. The doctors explained this is due to Matt’s limited movement, causing him to aspirate his own saliva. 

Keep in mind, Matt is a fun loving and very active individual, or he was until Covid-19 hit. Social distancing restrictions forced him to stay home, away from the nonprofit’s campus where he attended daily. Virtual zoom calls provide some exercise and activity, sometimes up to three hours a day. But the doctor said he needs more movement. The thing is, Matt is depressed. He misses his friends, his routine, learning and meeting goals. He misses the normalcy the nonprofit’s day training services gave him. But Matt and 163 other clients have not been allowed to return to the nonprofit’s day training campus, where programming kept them active and smiling all day.  

Now let me introduce you to Jason. Jason is 42 years old and is also a thriving adult with mild mental disability. He lives in a similar residential home as Matt. During the Covid-19 crisis, Jason has been distraught. He has become a flight risk from the residential home, attempting to walk the three miles to the nonprofit’s campus. He cries every day because he misses his friends. He doesn’t understand why he can’t visit his favorite local places or see the people that make his life feel normal.

Matt, Jason and the nearly 10,000 other adults with intellectual disabilities across the Commonwealth were left out of the conversation when it came to reducing Covid-19 restrictions. The nonprofit adult day center that Matt and Jason attend daily had no clear reopening date until yesterday, despite restaurants, bars, fitness centers, movie theatres and child care centers opening weeks ago statewide. Why are Matt and Jason’s health and wellbeing perceived as less important?

Puzzle Pieces is the Owensboro-based nonprofit that serves Matt, Jason and 162 other individuals with intellectual disabilities. Due to Covid-19 restrictions, our campus was ordered to close on March 20, leaving the families and caregivers we serve without care for their loved ones. We were permitted to offer in-home services for 15 families that are in extreme need or can afford to pay for services out of pocket, but this was only a small fraction of the families that rely on Puzzle Pieces to offer skilled care and training for their dependents. Do our legislators understand the services that over 200 providers in Kentucky provide, who have been left out of the phase planning and guidance to provide safe services?

Clients of Puzzle Pieces are accustomed to specific routines, interaction with peers and a person-centered approach to care and education offered by a trained direct support professional. Without these factors since March 20, clients were suffering from regression, which can range from increased crying and outbursts to a decrease in social and life skills. More than lacking the services we provide or their daily routines, our clients simply did not understand why they were not permitted to return to our day training campus, which only exacerbates their regression. Since our closure, 22 families have reported significant regression.

But our campus closure affected more than our clients with intellectual disabilities. The caregivers of these individuals were in desperate need of respite after nearly three months of around the clock care. Additionally, without care for their dependent, they were unable to return to work. Nearly 30 of our families have reported that they cannot return to their job without the reopening of the Puzzle Pieces’ Day Training services on our campus. While it is our goal to serve those with intellectual disabilities, we realize our nonprofit plays a significant part in the local economy by allowing parents and caretakers to work while their loved ones are professionally and reliably cared for by our staff. 

Puzzle Pieces has placed 19 individuals with disabilities in the workforce, further solidifying our local economic impact. Through very targeted training and job placement, Puzzle Pieces staff has ensured the success of these 19 individuals as valuable assets to their respective employers. Current restrictions have been lifted for the various fields in which these clients work, but because face-to-face training and support was prohibited we were prevented from reacclimating these individuals to their jobs. Were they left out of the conversation at the state level to ensure their support providers were given #healthatwork guidelines to ensure their employment long-term? All of these successful placements were in jeopardy without the proper person-centered approach that our clients require, which can only be given when our services are reinstated with proper guidelines. My point is that we were left out of the conversation.

During this pandemic, adults with intellectual disabilities have been cut off from health services, therapy and social activities that help them live fulfilled lives. As the state of Kentucky eased restrictions on restaurants, retails stores, fitness centers, summer sports and, most importantly, child care centers, why weren’t adult day centers included? It seems as though individuals with intellectual disabilities were, again, last in the conversation, with no talks of a potential reopening date until yesterday. This seems most evident in the fact that state officials understand the importance of child care centers as essential for people to return to work. In the same manner, adult day centers like Puzzle Pieces, are essential for our parents to return to work.

Top Kentucky health officials have said that individuals with intellectual disabilities are among the most vulnerable population, but not all persons with disabilities have underlying health issues. The state is failing to honor a person-centered approach where the guardian is allowed to decide the infection risk to their dependent. This is the case with a majority of our families, who believe, with a proper reopening plan, including health screenings, use of masks, social distancing and cleaning measures, their dependents are better served at our campus than in continued regression at home. The service providers, along with department leaders were left to figure it out and navigate these uncharted terrority alone with no insight of future planning.

As the executive director of Puzzle Pieces, I can appreciate the state’s need to move cautiously during this time, but each day that our campus was closed put more undue stress on our clients and their families and more financial strain on our nonprofit organization. Funded primarily through Medicaid, Puzzle Pieces serves adults who otherwise would be placed in a nursing home or institution for those with intellectual disabilities at a much higher cost. We were not able to bill approximately 2,400 hours of service per week. Our nonprofit and other adult day centers across the state allow an individual with an intellectual disability to live a much richer life, while still residing at home and not placed in long-term care. Beyond that, we ensure that these individuals are an included part of their community. Have you considered how to support us to ensure providers stay afloat during this difficult time? What will happen to those with disabilities if providers across the state can’t financially sustain their operation? Are we part of the conversation? Do you look at us as essential?

While I hope there is never a “next time,” I hope that Matt, Jason, the 162 other Puzzle Pieces clients and the 10,000 adults with intellectual disabilities across the Commonwealth are a part of the conversation. Remember them. Educate yourself and know that your decisions impact their quality of life. By not including them in your reopening plans you furthered their regression, added undue stress to their caretakers and in some cases prevented them from returning to work, and left nonprofits like Puzzle Pieces in financial crisis. 

Do better. That’s all I ask.

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