For years, Rachael Cohen, a 27-year-old with autism, has been obsessed with keeping her personal calendar up to date.
She knows that on Wednesdays she goes to a stable to help with the horses, while on the other weekdays she goes to a day program where she learns life skills and goes out shopping or to a playground. Also on her calendar was a music program at the Jewish Community Center and the occasional trip to Mystic Aquarium.
She played a game with her mother, Donna Cohen, every night. “Tomorrow is …” she would say and her mother would fill in the blank. But with COVID-19 sweeping the country her mother has had the same answer for her for weeks: “Play with mommy.”
“She thinks I have lost my mind,” said Cohen, who lives in Windsor. “Sometimes she’ll just keep staring at me, waiting for me to make sense.”
In the early days of isolating at home, Cohen said, her daughter was so frustrated with the change in her schedule she would smack herself in the head and scream.
“Her world has been rocked and I can’t offer anything to her. All I can say is: We’ve changed your schedule.”
“It was a lot – a lot – of screaming,” said Cohen, who explained that her daughter does not understand anything abstract. “We can’t say, ‘We’re trying to keep you safe. This is what we need to do.’ All she thinks is, ‘We’re not going there.’”
That’s what Cohen finds the most heartbreaking – that she doesn’t know what her daughter is feeling.
“Her days must be very stressful,” said Cohen. “While we can talk out our fears, she must feel very lonely and scared. Her world has been rocked and I can’t offer anything to her. All I can say is: We’ve changed your schedule.”
Donna Cohen and her husband, Hal, are among the 1,500 families in Connecticut living at home with adult children who have intellectual disabilities and who receive services such as day programs, according to the state Department of Developmental Services. Now, with day programs and other services shut down because of COVID-19 – and with the temporary loss, for some, of aides at home – many of them have oversight of their children all day, every day.
Parents living that new reality aren’t the only ones concerned.
Shannon Jacovino, director of advocacy and public policy for The Arc Connecticut, and several other advocates wrote a letter on March 20 to the commissioners of the departments of developmental disabilities and social services.
“These families need help finding caregivers for the duration while their loved ones are at home, as it is simply not humanly possible for families to care for children and young adults with severe behaviors 24 hours a day, seven days a week, indefinitely,” they wrote.
The advocates requested that the state seek federal approval to allow family members to act as paid providers for their children, among other measures.
“I think what makes it difficult for these families is not knowing what lies ahead and really not having any sense of how long this is going to last,” Jacovino said Monday.
Krista Ostaszewski, communications director for the Department of Developmental Services, said Monday that the state has received the approval for that “flexibility” but that it will only be allowed under certain circumstances and will be reviewed on a case-by-case basis. She wasn’t certain Tuesday what that criteria would be.
“We understand the stress and anxiety this extraordinarily challenging time has caused for individuals and families we serve,” Ostaszewski said in an email.
Losing hard-won ground
Day programs and supported employment programs are “not babysitting,” Jacovino noted. “These are programs that help people to live fuller lives and to develop skills and to be integrated into the community to do all those things, and the longer that people don’t have those supports they lose those skills. I know that is something a lot of parents worry about.”
Cathy Jortner of Berlin has seen her son, Andy Jortner, 36, who has Down syndrome, autism and selective mutism, lose ground since the programs he attended through Futures, Inc. have shut down.
At the agency’s Good Cause Gift Store in Berlin, Andy had learned to run the cash register, to stock the shelves and to take inventory.
“He was like Mr. Berlin,” said Jortner, greeting people he knew as they came in to shop. “He’d go to work in a shirt and tie and dress pants. He had a little clipboard to do inventory.”
In addition, Andy was a participant in the Community First Choice program, which allowed Jortner to hire her family or friends to take him out into the community. Her nephew taught Andy how to skate through the program and would take him out to lunch.
With his father, Andy was also a member of a local Italian club and an Elks Club that they would visit weekly.
“He had a very, very full social life,” said Jortner. “To go from that to sitting in your room is a huge shock. He’s getting depressed.”
While before he went to bed at about 10 p.m. and got up at 7 a.m., Jortner said, now he roams the house until 4 in the morning before finally dropping off to sleep.
During the day, it’s hard to get him out of his room, and he has had a significant decline in his inclination to speak. He’ll text his mother rather than talk to her because it’s easier, she said, and he’s been engaging in repetitive behaviors such as stacking his papers in precise piles that, if disturbed, will upset him.
“A lot of behaviors we haven’t seen in years have started to pop up again,” she said.
When he got a message on his phone from the Gov. Ned Lamont telling him to stay safe and stay home, he texted his mother asking, “Mom, are we going to die?”
“He had a very, very full social life. To go from that to sitting in your room is a huge shock. He’s getting depressed.”
He has heard the messages on television about the need to wash his hands and has started to do so obsessively.
The staff members at Futures, Inc. have reached out to Andy to try to keep the relationship going, offering to talk or take a walk at a safe six-foot distance.
But Andy has declined, somehow interpreting the invitations as a call to return to work. Explaining his refusal to his mother in a text, he said, referencing the governor, “Sorry can’t do it. The store is closed up. Ned wants everybody to work from home.”
“I see how much he’s lost in this short time that we’ve been home,” said Jortner. “The thought of staying home another month is – who know what he’ll be in a month? Who knows how long it’s going to take to get us back to where we were? I’m afraid by the time he goes back, he won’t have any speech left at all.”
Zoom to the rescue
Lindsey Sidera exuded enthusiasm and cheer as she invited the dozen or so clients with intellectual disabilities gathered virtually for a Zoom session to discuss happiness.
“What does a good life look like to you?” asks Sidera, who helps provide support and coordinates employment for clients of MARC, Inc. of Manchester. “Sometimes those answers are not that easy to come up with. Sometimes you need to come up with a different goal every single year.”
It may seem that transferring a day program for people with intellectual disabilities to the virtual world would be nearly impossible, but MARC, Inc. chief executive officer and president Kevin Zingler was determined to do it and did so quickly.
“We’re on the cutting edge with this,” said Zingler, who saw to it that his clients had the technology they needed to participate, loaning them devices if need be.
Zingler and his staff have created an all-day program that clients can tune into, starting with a coffee klatch at 9 a.m. straight through to a bedtime story. The hours in between recently included lessons on making lunch and doing laundry, a pet show and tell, how to interview for a job and even a dance party. He is also having staff members check in with clients and their families on their health and safety and even delivering groceries or medicine if needed.
Other agencies are also creating online programs and reaching out in variety of ways to their clients. Pam DonAroma, chief executive officer and president of Futures, Inc., which runs the employment program that Andy Jortner is part of, said her staff is reaching out to clients online and, if they don’t have technology, making phone calls. In one case, she said a staff member read a book with a client over the phone.
For David Rees, a 22-year-old with an intellectual disability, the MARC program has been a welcome surprise, his mother Merryl Rees said.
Normally David Rees is out the door every morning attending a MARC-arranged internship at Goodwin University, where he was learning skills needed to set up events, maintain a facility and landscape.
But with his job shut down, he is home all day. Rees said that as much as she tried to structure his day for him while she works at home, there wasn’t much for him to do except watch television.
“I thought he was doing OK the first week he was home, but it wasn’t until this past week when the online classes started that I realized how much he craves this connection with people,” Rees said. “He has flourished. To see something develop like this amidst the chaos was so positive and so completely unexpected.”
During the Zoom session, Sidera shifted from client to client, focusing in on each one to ask about the goals they’ve achieved and the ones they hope to reach. Clients smiled and laughed as they talked about goals like buying a car, exercising or getting a job.
When she reached Rees, he told Sidera about a goal he had almost mastered: tying his shoes.
“We haven’t perfected it yet,” Sidera responded, “but you’ve learned how to tie a bow, so that’s a huge goal. And you’ve finished two internships, so you’ve done a lot this year alone!”
“Yes, I have,” said Rees, beaming.
Thank you, thank you for this article highlighting the challenges our families with Intellectual & Developmental Disabilities are facing. Very honest.
New Britain, CT
Please know that I am here for Rachael and those in the special needs community. I am a board certified music therapist trained in telehealth. I have reached out to my organizations and so far everyone has rejected my proposal. I just don’t understand. Rachael is in my public group at the JCC. I know her well and can imagine what she is going through right now!
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