One in 59 receive a diagnosis of Autism Spectrum Disorder, but entire families are impacted by the neurological disorder which presents with communication, social, and behavioral challenges. While much has been done to support parents and siblings of individuals with autism, little attention has been paid to grandparents.
Recently, 84-year-old Kit Peterson, grandmother to a resident here at Anderson Center for Autism, shared her journey. She talked about the fact that when her grandson Jonathan (now a two-time gold-medalist figure skater in the New York State Special Olympics) was first diagnosed, she felt sad and helpless, but also felt a great need to educate herself about autism. Kit knew she needed to provide support to her daughter Karla, a single mom, and jumped in where she could, as the entire family did — in hopes of giving Jonathan the highest quality of life possible — but ended up discovering that her role extended far beyond her family.
It was through the services Jonathan received that Kit began to understand the important work of direct support professionals. This group, which numbers approximately 100,000 in New York state alone, has tremendous responsibility to people with special needs. From understanding and complying with OSHA regulations and laws protecting people with developmental disabilities to managing complex educational and medical needs, direct support professionals are the go-to for just about every aspect of care that takes place in facilities like ours. They are expected to communicate frequently with families and fellow staff, to work long, stressful days and nights (sometimes weekends and holidays), and to bring a spirit of optimism and compassion to every single moment, regardless of how burned out they might feel. As you can imagine, turnover is high.
Kit couldn’t believe how many children — just like Jonathan — had to mourn the loss of a direct support professional in his or her life who was forced to move in a different career direction because he or she was so grossly underpaid. But who can support a family when earning only $10-$13 an hour? Totally understandable that these folks are forced to move on. Many are so happy with what they’re doing but cannot live on those salaries. Sadly, the situation leaves gaping holes — not only for agencies providing services, but more importantly, in the hearts of those children and adults who became so connected to their direct support professionals.
When Kit learned the disheartening truth about this caregiving crisis, she got to work. She set off to Albany to fight for fair pay. Along with a group called Anderson Family Partners, she asked legislators to support budget enhancements that would allow agencies to compensate at a reasonable rate. A rate that won’t leave direct support professionals seeking supplemental sources of income — or worse, resigning from their jobs — just to pay their rents. Kit has since written about her experience in hopes that she can inspire others to advocate as she has done.
At 84, this grandmother has direction and a full heart. While she’s there for Karla and Jonathan every step of the way, she knows that her role extends well beyond her family. She knows that retirees often have time and resources that parents of children with autism or other disabilities do not. She recognizes that there’s much work to do, and that she has a responsibility to continue her efforts in hopes of helping to build a movement that will help solve the caregiving crisis we face today.
If you’d like to help Kit — whether you’re a grandparent or not — reach out today to learn more about advocacy efforts happening throughout New York State.