A Mother’s Love: How One Mother’s Love Transformed Care
For a mother of a child with an intellectual or developmental disability, it might also mean ongoing advocacy for your child and the disability community as a whole.
Yvon Novy is one of those mothers—a powerful parent advocate and friend to many in Citizens Options Unlimited’s community who are considered medically frail or have an increased need for medical care and an increased chance of health problems.
Yvon helped to create the first-ever “medically frail” house in Helen Kaplan Program ICF in 2010. This is where her son, David, lived for nearly 12 years, before his passing.
“She was instrumental in making sure this happened,” Marta Garavito, Director of the Helen Kaplan Program ICF at Citizens Options Unlimited, said.
All of David’s life, Yvon lobbied for stronger support in medical settings for people with disabilities. His younger brother Joshua, a Medical Doctor (MD), has also been a strong advocate. On February 2, David Novy passed away due to complications related to Covid-19. He was 41 years old.
David caught pneumonia and, soon after, another infection while in the hospital.
“David was steering the ship, so if it was his time, it was his time,” Yvon said.
David was born a breach baby. Because of this, he lost nearly 80 percent of brain functioning at birth. This caused David to become a quadriplegic, partially blind, non-verbal, and require a feeding tube.
David lived at home until he was 29. He loved to smile and giggled a lot. He was fond of classical music. David connected through sound and sight. He found joy in his family’s dogs; the Novi family usually had at least two dogs at a time.
“We thought David would like a lap dog and we ended up adopting a 160-pound Mastiff-Boxer mix,” Yvon said. “Caesar looooved David.”
David had been on a New York Cares waiting list for a residential placement for nearly a decade.
“When it finally came up, I could’ve said no but he’d go back to the bottom of the list again…It could’ve taken another ten years until another opportunity opened up,” Yvon said. “So, I said yes.”
When the house opened, Yvon made a point to proactively connect with staff. She shared the unique experiences she’d had in supporting the medically frail and non-verbal communities, especially to preemptively notice signs of illness.
Yvon educated staff on how to use a wheelchair and other adaptive equipment, like a Hoyer lift. She taught them how to expect and prepare for illnesses, since people who are medically frail often have a more compromised immune system. She taught them how to help David when he became spastic and stiff, a result of being a quadriplegic.
Now, medical direct support professionals (DSPs) require an Approved Medication Administration Personnel (AMAP) certification. They oversee each resident’s medications, medical appointments and, in case of an emergency, hospital visits. They must be familiar with all the conditions and needs for each resident’s specific disability.
Yvon also created a Patient Care Task Force to educate local hospitals on how to handle patients with disabilities, primarily those that are medically frail and/or non-verbal.
“I kind of caught them up on what it means to be medically frail or non-verbal,” Yvon said.
Yvon encouraged Northshore Plainview Hospital staff to come tour Helen Kaplan and get a better understanding of the level of care required to support residents. She then gave the tour and offered insight on how the hospital could provide adequate care to patients with disabilities, especially those who were non-verbal. She taught them to write “non-verbal” on the whiteboards outside patients’ doors in hospitals and doctors’ offices.
She did so much for the disability community that she was invited to sit on the hospital’s Patient Advisory Council, which she did for nearly ten years.
“She had so much passion and loyalty to helping the disabled community on Long Island,” Marta said.
Despite her son’s passing nearly three months ago, Yvon plans to still regularly visit Helen Kaplan. She was one of several mothers who seemed to take the whole house under her wing, since some parents or guardians had passed away or lived out of state. That doesn’t stop now after her son passed away.
Yvon looks forward to honoring her son David at Helen Kaplan. She plans to create a memory garden for all to enjoy and engrave a bench where she can sit and remember her son. The residents and staff are also planning to organize an event to remember all the lives lost to Covid-19.
“His smile could light up a room. Everyone absolutely adored him,” Yvon said. “He was the most innocent angel. He will be greatly missed by all.”