Despite how difficult it was to accept our family’s reality, we all jumped in to support Karla. Jonathan received every service available: occupational, speech, and physical therapies, special education, and more. The interactions with the professionals behind these services became more frequent than anyone could have imagined when he was first diagnosed. These folks offered more than professional expertise; they offered compassion, consistency, and care for a child who needed them to help him navigate his complicated world.
By the age of 8, Karla knew it was time to place Jonathan in full-time residential care, a very painful juncture in a family’s life. We had come to understand more than we ever imagined learning about the neurological disorder that was initially such an enigma to us, and were continuing to learn every day. One of the biggest discoveries made was that people on the autism spectrum typically need a highly structured, customized atmosphere to make real progress, which is why residential settings become a must for children like Jonathan. A cornerstone piece of the residential experience is having staff who, by virtue of the fact that they are with the students and residents all day every day, learn the intricacies of each person’s unique needs and strengths. Like a parent or grandparent, it is that breadth and depth of knowledge which direct care professionals develop that can catapult kids like Jonathan to success. And it is their dependable, consistent presence that gives people with autism the much-needed continuity and routine in their lives while fulfilling the universal need we all share for love and support.
Sadly, direct support professionals are so grossly underpaid that many are forced to leave agencies for better-paying jobs. They earn, on average, $10-$13 hourly, but their job descriptions encompass everything from complying with OSHA regulations and managing medical treatment and educational needs to keeping people with developmental disabilities (some of whom are completely nonverbal or present with serious behavioral issues) safe, healthy, and happy. Yes, it’s requires the type of support a full-time parent would provide. At a rate which is barely over minimum wage. Imagine that: these are the people who bring a child with autism to the hospital in the middle of the night. They are the ones who reinforce what is being taught in the classroom. They collaborate with other staff. They have to be familiar with laws protecting those with disabilities. They communicate regularly with families. They often have to work overtime (no matter how exhausted they are) or give up holidays to stay with the residents who don’t have family who can bring them home. And yet, working at a fast-food restaurant often comes with better compensation. So, many of these wonderful caregivers understandably opt out, leaving kids and adults just like Jonathan mourning the loss of someone who feels like family – which can result in regression, an increase in difficult behaviors, and of course, depression – all totally counterproductive when they are working so hard to learn and progress.
Today, at 84 years old, I have become passionate about this issue, and travel to Albany, NY to lobby for better pay for direct care professionals. With 1 in 59 now diagnosed with autism and all of us living healthier, longer lives, I believe that grandparents (who often have the time and resources that working parents may not have) serve an important role which extends far outside the borders of their own families: to fight on behalf of this dedicated faction of people who care for those with disabilities. This is our responsibility to our grandchildren. For every grandparent of someone with autism, there is a path to helping hundreds of others who are impacted: it begins right in Albany, but can reach far beyond New York State. We must raise our voices on behalf of a group who often cannot speak for themselves; they are our grandchildren. They need direct support professionals who can afford to stay in their positions and provide the consistent care that serves to help them live the most fulfilling lives possible. And we need to do our part to help make that happen.