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Home But Not Alone: The Daunting Task of Being a 24/7 Caregiver

Retro tiredThe article excerpt below my rant commentary is from the CT Mirror.

I live in Connecticut and am home with my three daughters with autism.  While we're "OK" for the most part, this is not easy. Mostly for them, but I won't fib, it's not easy for me either.  The day program my older daughters has re-opened for a limited number of individuals. I declined to send them for a couple of  reasons. First off, we really are self-quarantining. They have not left the house except for a couple of rides in the car. I have been to the drugstore and the grocery store for a fly-by grab of what I need, in an out in under 15 minutes.  Second, I think the limited day program space should be used by families with elderly parents, or adults who have severe and dangerous behaviors to give the caregivers a break. My girls sleep well, so by 9:30pm, my house is quiet. My break is from then until about 4:30am when Gianna wakes up and starts pacing. I don't have to get up for good, but I check on her and never really go back to sleep. Still, that's more than many families have, and I'm grateful.

The good news is that Connecticut brought back our plastic grocery bags at check out! The Governor made stores start charging $.10 a piece many months ago.  What a pain in the ass dragging out your groceries in a reusable bag.  I always said those bags were gross - used and reused. Groceries can be icky. Strawberries and other fruits can leak. Chicken or beef can drip even if double wrapped.  Reusable bags seemed a recipe for food borne illness, pantry months and worse. And I missed them dearly - not sure about your house, but I line my bathroom trashcan with plastic grocery store bags. They're back at every check out. And free! YAY COVID!

I worry about every family who reads us. I worry about the families with kids with autism who can't stand us because we talk about vaccines.  I worry about the people who comment about crisis actors - BTW, I am deleting those comments, we have enough people calling us names and accusing us of nonsense, I won't go down the crisis actor/false flag rabbit hole.  I hope you understand and continue to read and comment otherwise.

I don't trust most of what I see on TV or read, and I sure don't think COVID-19 us here by some random accident. I don't know how the heck we ended up in this global lock down, or how it will end.  I'm not paid to think big picture. Way above my grade, yanno? 

I know I can not afford to get sick. And I sure as hell can't die. My daughters need me. My former other half is in our rear view mirror (objects had better not be closer than they appear) 'nuf said about that ancient history.

The article below mentions paying parents as caregivers during this time. If I got paid even $15 an hour, I work a full 168 hours a week and that would be $2520, or $131,000 a year.  Nice work, if you can get it.

I guess I'm asking everyone to hang in there - do your best. Let's see what each week brings.  Love to everyone. Kim

During COVID-19, disabled adults lack services and supports

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 and Rachael Cohen point to ducks on the Farmington River while on a walk with Rachael’s dad, Hal Cohen, on the Windsor Center River Trail on a recent afternoon. Rachael, who has autism and other disabilities, has had her normal routine halted by the coronavirus outbreak and her parents are concerned about how the disruption is affecting her.

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.  READ MORE HERE.

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.


sabina de sturler

re grocery bags : the solution is cotton, ectr. WASHABLE! i've used mine fob 10 years now.

Michelle Zavitz Tucker

Some parents in Ohio are receiving checks for caring for their children at home during this time. It depends on which county you reside and the caveat is that you had to have already signed up and been approved as qualifying by that County. We are military and officially residents of another State/County so we don't qualify for our current location or our official residency (because we don't have an IEP from that county).


WOW! What a self-less Mom you are, incredible. Keeping your girls home when you could send them to their program but let others have those slots instead. You are amazing and an inspiration to others.


Kim, I hope you know that your words have kept many of us afloat.


Kim-You are a true inspiration to all of us who are facing being home bound with our adult family members with autism. I am home too with my adult son with autism every day and all day and it is a very daunting task to keep him busy and occupied while I try to go about doing all the necessary chores like laundry, preparing meals, cleaning and all the things we normally do. We, as autism parents are very challenged at a time when a pandemic like this is happening and we also have to try to keep ourselves calm and under control because our children need us to be there for them. Let's hope all of us autism parents stay well and can continue to be there to care for our family members with autism every day. Praying for everyone. God Bless you and all in our autism community.

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