Renzo Viscardi, center, with parents Anthony Viscardi and Cheryl Dougan

Nearly twenty years ago our son, Renzo, experienced cardiac arrest while participating in gym activities at school. He was only fourteen. The cause was an underlying condition called Long QT Syndrome. The rhythm of his heart was restored with a defibrillator, but not soon enough to prevent a severe anoxic brain injury. After nearly one month in a coma, Renzo’s doctors believed that he would likely remain in a persistent vegetative state.

After three months in hospitals with minimal progress, it was suggested that we place Renzo in a long-term care facility. This seemed like an unthinkable option for us. Instead, we transformed our dining room to become Renzo’s accessible bedroom. We furnished it with a hospital bed, assorted medical equipment, and supplies. Our son returned home unable to smile, swallow, speak, walk, control his bladder or bowels, or do any activity of daily living. We began the difficult task of learning to parent a child with life-long disabilities.

I assumed the role of unpaid "caregiver." This is such an inadequate word to describe the most critical and complex work one can imagine. We became a single income family. We wondered how we could possibly afford this life we were given.

Our son turned thirty-four this past year. We’ve survived and are, by all appearances, thriving. Our community of friends and our families supported us through the most difficult years, while I navigated insurance, established medical and therapeutic supports, and learned about disability services, while hands-on caring for our son’s every need. Reluctantly, we accepted Direct Support Professionals (DSPs) into our home to help. Some lasted only a few days. The work was too hard and the pay too low. A few of the best stayed. Together we began to imagine a brighter future for Renzo, the one he deserved.

With great fanfare ten years ago, we moved Renzo into a house around the corner from us. He works part-time. He volunteers in the community. He attends community college. He works out in the pool or gym, and rides horseback once a week. He has a very active social life, and he loves good cooking. A miracle? Not exactly the one we were hoping for, but still remarkable. This was made possible by a round-the-clock team of DSPs.

A miracle? Not exactly the one we were hoping for, but still remarkable. This was made possible by a round-the-clock team of DSPs.

Despite our best efforts to create a wonderful life for our son, we know it could crumble in a moment. Everything, absolutely everything, depends upon the stability and quality of his support staff. In our state of Pennsylvania, DSPs are being paid wages that are 25% - 50% below a living wage. They have not had a significant increase in over ten years. The average DSP salary in the United States is approximately $10.80. Many work two or three jobs. Nearly half are dependent on public benefits. Until recently, there were no nationally validated competencies for DSPs, no common professional code of ethics, no career ladder, and sadly, little recognition for the important work they do. No wonder the average turnover rate hovers around 40%. Our son’s DSPs deserve more.

As my husband and I approach our seventies we need to feel we are fulfilling our responsibility to provide a safe and secure future for our son. We’re doing all we possibly can. All that remains to complete our task is to know that a competent, ethical, and appropriately paid DSP workforce will be available, throughout his lifespan, to help him achieve his potential as a fully contributing member of our community.