by Sue Ann Rybak

This week the Local is doing a series on the heroes of the COVID-19 pandemic – doctors, nurses, scientists, police officers, bus drivers – the list is endless – but one group – Aging parents and families of adult children with disabilities deserves special recognition.

Even in the “best of times,” caring for a family member with autism, intellectual and developmental disabilities, can be overwhelming and leave families feeling isolated and anxious.

Audrey “Dee” Coccia, 80, is currently taking care of her 82-year-old husband, Vince, who has Lewy body dementia and her 55-year-old daughter Gina, who is nonverbal and has intellectual and developmental disabilities.

“The longer this goes on, the more problematic it becomes for behaviors,” she said. “Not just my daughter, but my husband, too. It can get tough sometimes. You want to be patient with people and help them through these tough times.”

Coccia, co-founder and co-executive director of Vision for Equality, Inc., said many families have worked to obtain a Medicaid waiver, which allows people with disabilities to receive services in their homes instead of a nursing home or other institution.

“They have chosen to take care of them and keep them at home, but at a time like this, it really is difficult,” she said.

Coccia, who lives in northeast Philadelphia, said it’s not that she can’t get help, but bringing another person in the house puts them all at risk.

“I can’t take that chance,” she said.

Carol Costello, whose sister Tish Boyle taught kindergarten at Jenks Academy for the Arts and Sciences in Chestnut Hill, knows firsthand how difficult it can be to care for an adult child with a disability.

Costello, 58, takes care of her 34-year-old daughter Colleen in her home in Roxborough. Colleen has a genetic disability called translocation – in which two chromosomes exchange pieces of themselves.

“Colleen has come a long way,” Costello said. “She had to have four leg surgeries to even be able to walk because of the way her feet were when she was little. She has a hole in her heart. Initially, they wanted to close it, but then they thought it would be better not to. She has a lot of trouble under anesthesia.”

Costello said they are receiving respite and home and companion services now. She said she is fortunate to have a good caregiver that has provided excellent services to Colleen for the last six years.  

“There were times when I didn’t,” she said. “Colleen was even in a police chase with one aide.”

Costello, who is a kidney cancer survivor, said when times were difficult, she has been “blessed” with an aide who was competent and reliable. She said it’s difficult to go places with Colleen because she has difficulties walking. A simple trip to the food store would not only be dangerous but almost impossible.

“I would be too afraid to take her to the store with me,” she said. “I wouldn’t be able to. I have issues with my knees. I wouldn’t be able to push her, get groceries, and make sure she is okay. I just wouldn’t be able to do it all.”

Before the stay-at-home order, Colleen attended Intercommunity Action, Inc.’s day activities center in Roxborough.

“I don’t think it’s good for her to be here all day every day,” Costello said. “I am not talking about for myself; I am talking about for her. It’s just such a limited world sitting in the living room all day.”

Interact’s day service program runs from 8 a.m. to 4 p.m., and Costello said her aide usually picks her up around 3 p.m. The change in routine has affected her daughter’s sleep schedule.  The loss of routine has made Collen disinterested in everything. Now Costello said, all her daughter wants to do is watch baby videos or Barney videos on her kindle.

“That’s a problem because she doesn’t want to do anything else,” she said.

Costello said it’s a challenge to get her to put the kindle down and “come over to the table to eat for 15 minutes.”

“It’s going to take at least three months for her to get back to her normal routine,” she said. “If and when the program opens up, it scares me. I think they have about 100 people in the program. Colleen is not going to wear a mask all day. She can’t toilet herself. Just to be in a room of 100 individuals with a few staff. In defense of the staff, they are never going to be able to change gloves fast enough to change from one individual to another.

“God forbid she gets, and I can’t be there to take care of her,” she said. “Of course, she is going to be combative because she can’t communicate. It’s hard to advocate for her over the phone when I can’t see her. That was my big fear. How is this going to work if this happens? I am the only one here at night. What if I got sick? Who is going to care for Colleen?”

Coccia, co-founder and co-executive director of Vision for Equality, Inc., said Costello is just one of many examples of family members struggling to take care of their adult children with intellectual and developmental disabilities during the pandemic.

“The determination of all of us is amazing is because we want to keep our sons and daughters home,” she said. “So, we will go to the ends of the earth to do that – even if it means we are tired, even if it means we are having a bad day ourselves. Even though they are adults, they are still members of our family.”