Developmental Disabilities: The Unsung Heroes in a Time of Crisis

March is Developmental Disabilities Awareness Month. I want to use this week’s blog to bring awareness to the unsung heroes: the staff who provide care for those with developmental disabilities. It’s a job that rarely gets noticed by anyone but the family, and it’s a tough job. It’s a profession without the prestige, paycheck, or benefits doctors and nurses have, but it’s a valuable position. Without the people who provide care for people with developmental disabilities, we would be lost. They truly are heroes deserving of so much more.

My initial career plan was to be one of those heroes without a cape. After spending the summer between my junior and senior years of college working at a camp for people with intellectual disabilities, I changed career plans. I was heartbroken to admit that I didn’t have the vitally important qualities necessary to be successful in this profession. My disappointment with myself, coupled with my love of my brother who has intellectual disabilities, led to a lifelong appreciation, respect, and admiration for the people who work the front line with people with intellectual disabilities.

I loved working as the Waterfront Director at Camp Redlands, but it changed my career path.

People who provide direct care to individuals with developmental disabilities work in a variety of settings. They may work in large facilities called Intermediate Care Facilities, group homes or, if a person is fortunate enough to have Medicaid Waiver services, they may work one-on-one in the client’s home. Wherever they work, they are being called to a challenging situation as we face the changes accompanying the Coronavirus. Staying home is something we all need to be doing right now, if at all possible. It’s even more important for many people who have intellectual disabilities accompanied by other health conditions that can be exacerbated by respiratory viruses.

My brother is 57 years old and lives in an Intermediate Care Facility, Lake Drive in Henryetta, Oklahoma. There is a stigma against people with intellectual disabilities living in intermediate care facilities, but I stand firm in my belief my brother is exactly where he needs to be. Since I took over guardianship of my brother after our parents’ deaths ten years ago, I have become much more familiar with the staff at his home. I don’t like to use the word “staff” because they have become my friends and my brother’s family. Where he lives is, in every sense of the word, a true home.

The residents’ parents and staff held a sidewalk pep rally last week, with a special poster for each resident. A pizza party followed.

Never have I appreciated my brother’s home and caregivers as fully as I do now. We are in a worldwide crisis, a pandemic. As of Monday, nursing homes and Intermediate Care Facilities across the state of Oklahoma went into isolation mode. The new restrictions mean no more field trips or even simple trips out into the community for the residents. Visits from the outside world, including the resident’s family, are prohibited for the foreseeable future. The staff at these homes have an even more difficult job than usual; they have to make sure the residents (many of whom are at high risk for the Coronavirus) stay as safe as possible while also maintaining a good quality of life for the residents. As if this isn’t a big enough job, they must do this while still maintaining their own health and that of their families.

When I visited my brother right before they closed his home to outside visitors, I tried to explain to him why I wouldn’t be visiting for a while. He didn’t understand, but he seemed okay with it; I was the one suffering. I almost envy my brother’s obliviousness to the worries of the world. His caregivers have assured me they will take care of my brother, and I believe and trust them one hundred percent. Taking care of the residents is not just a job to them; it’s their calling in life.

My brother’s home has responded to the virus and isolation by attempting to provide fun within the home, more activities in the confines of the home, two pizza parties, and a window pep rally organized by one of the resident’s parents, complete with personalized posters for each resident. They’re also willing to help with Skype if a resident or their family requests it. I think my brother’s home is exceptional, but I know caregivers everywhere are doing whatever they can to make this challenging time less confusing, safer, and more enjoyable for people with developmental disabilities.

After I mentioned to my brother’s case manager that David always found Mr. Rogers to be a soothing presence, she made him this poster. She is my hero!

I’m beyond grateful for people who have chosen to work in the field of providing care to people with intellectual disabilities. I trust them with my brother’s life. Although this is a time of anxiety and an unknown future, I rest easier knowing his emotional needs, as well as his medical needs, are being well taken care of. There are angels on this earth, and they are disguised as caregivers for the intellectually disabled.