A Good Life Depends on Home and Community-Based Services (by Cheryl Dougan & Renzo Dougan Viscardi)
Renzo Dougan Viscardi [image description: A man with light skin, dark curly hair, beard and mustache wears a grey hoodie. He poses in a living room, with four guitars of different styles mounted on a white wall behind him.]
Renzo is 38 and living what some might call an enviable life. Entering his home, you’d quickly realize his passion for the guitar; several are displayed on his wall. You’d also learn, from the memorabilia and the books on his shelves, that he has a thing for the Beatles, Bob Dylan, and the Grateful Dead. He landed his dream job at Martin Guitar nearly twenty years ago, so he knows many of the local musicians.
Sometimes it seems that everyone in town knows Renzo. His warm smile draws people to him, whether he’s at the gym, the pool, horseback riding, taking classes at our community college, or fishing. His great sense of humor makes him a welcome guest at our neighborhood gatherings. Even the poll workers know him by name, as he shows up to vote at most elections.
Renzo has come a long way since surviving a sudden cardiac arrest with a subsequent anoxic brain injury at age 14. He had been participating in the Presidential Fitness Test during gym class. Renzo was medevaced to a specialty hospital an hour away, where he remained in a coma for the next month. The doctors told us he would likely remain in a "persistent vegetative state." How dehumanizing! The preferred medical term, since around 2010, has been “unresponsive wakefulness syndrome.”
Renzo’s father, Tony, was granted medical leave from his professorship, and I suspended work on my MFA. We stayed by Renzo’s side over the next three months, spent in three different hospitals. We taught him to breathe again without assistance, and his tracheal tube was removed before he was discharged home. Our dining room was transformed with a hospital bed and an array of medical equipment. Renzo could no longer walk, talk, eat, or control his bodily functions.
Renzo and Cheryl [image description: A man and woman, both with light skin, wearing blue clothing, pose outside in front of a green hedge and a grey fence. The man is seated in a wheelchair and the woman is standing.]
At first, insurance provided only eight hours of nursing per night, ostensibly so Tony and I could sleep. We were left to attend to Renzo’s countless daily needs. It was physically and emotionally draining. We would not have survived, if not for our community who rallied to support our every need. They even delivered meals for the next year, allowing us time to focus on Renzo’s immediate needs.
When Tony returned to work, Renzo’s care became my full-time job. I struggled to make sense of the fragmented service systems our son’s future depended on. I was relieved to learn Renzo would receive school-based services, including physical, occupational, and speech therapies. These services made all the difference in Renzo’s recovery efforts. When he turned 21, he began receiving Home and Community-Based Services (HCBS) through Medicaid, which provide supports for his right to live in his community, which is less costly than living in an institution.
Tony and I continue to help Renzo with as many of his needs as we can. His life-long security, however, depends upon Medicaid’s HCBS waivers, which pay for his Direct Support Professionals (DSPs). DSPs assist him round-the-clock with his medications, and with all activities of daily living. They learn the nuances of Renzo’s communication, his physical and emotional needs, and they help him communicate with his doctors, therapists, co-workers, and people in his community.
Renzo [image description: A closeup of a smiling man with light skin and dark curly hair. He sports a closely trimmed mustache and beard. He wears a grey shirt under a blue and white checked shirt.]
We were all devastated when one of Renzo’s most reliable and compassionate direct support workers told us he could no longer afford to work with him. He was making barely enough to rent a room in someone’s house and to make his car payments. When Renzo loses a valued DSP, his smile doesn’t come as easily, and his body language changes. Someone he viewed as a friend is suddenly gone, and he must entrust yet another stranger with his care.
So many DSPs are being forced to leave this meaningful and essential work for higher-paid menial work in distribution warehouses, fast-food restaurants, etc. Who will be left to care for Renzo when we die?
Today, the median wage for home care workers nationwide is only $12 per hour. Over half of our nation’s DSPs rely on government-funded benefits, and most DSPs work two or three jobs in order to make ends meet. Among this workforce, 37% are uninsured and another 21% rely on public insurance like Medicaid. According to a study from the Economic Policy Institute, it would actually save taxpayer dollars were we to provide DSPs a living wage. DSPs are so much more than “caregivers;” they are a lifeline.
Our family has faced many fears and worked hard to assure Renzo’s quality of life, fulfillment of his potential, and his place in our community. We’ve learned much about resilience and the importance of government programs, not only as a safety net, but also as an investment in our citizens with disabilities and those who support them. It is imperative that our nation invests more state and federal funds in HCBS.
Cheryl Dougan, a parent activist, has worked for change in the way people with disabilities are served since 1998. She is committed to the principles of Self-Determination and Person-Centered Thinking, both key to mapping a meaningful future for Renzo. Cheryl has served on the boards of several state and national disability related organizations, including the National Alliance for Direct Support Professionals, and is active in ongoing system transformation work with the Pennsylvania Office of Developmental Programs. She has presented at numerous state and national conferences. Cheryl lives in Bethlehem, PA with her husband Anthony Viscardi. Their son, Renzo, lives right around the corner in his own house, where he is supported by a remarkable team of Direct Support Professionals.
Renzo Dougan Viscardi is a creative individual with a broad range of interests including music of the sixties, art, and travel. He enjoys horseback riding, water activities, concerts, movies, children, good friends, strumming guitar, and Italy. Renzo did clerical work at Martin Guitar Company from 2002 until 2020, the beginning of Covid, and volunteered for fourteen years with the Easter Seals pre-school program. He received the 2004 Volunteer Center of the Lehigh Valley Award for Outstanding and Dedicated Service to the Community and the 2013 Vocational Achievement, presented by the Intellectual Disability Awareness Steering Committee of Lehigh & Northampton Counties. Renzo is an exhibiting artist working in mosaic, collage, and acrylic paint. Renzo served on the Northampton County MH/EI/DP Advisory Board (Nov 2010 to Jan 2013).