'The crisis has become even more pronounced and more severe'
The clock is ticking and N.J. families are facing an autism services crisis
3 minute video https://www.youtube.com/watch?v=DCX3TJ4ecc8
Chelsea:
I can’t live like this.
Chelsea Cella is in a desperate situation.
Her daughter is one of 18,000 children in New Jersey with severe autism.
Gianna is prescribed 15 hours of after school therapy each week to help her communicate and navigate daily life.
But Gianna is only receiving two hours a week.
Chelsea:
When she was receiving more services, she was less violent.
She listened better. We could take her out places. She wasn’t so hard on me and screaming all the time.
And ever since those hours were cut, she was literally uncontrollable.
New Jersey is experiencing a critical shortage of qualified, trained direct care staff, according to a 2023 state report.
Paul Aronsohn, Ombudsman:
It was a crisis prepandemic, but since then the crisis has become even more pronounced and more severe.
Many therapy professionals are not trained to manage children with the most challenging behavior, such as injuring themselves and others according to non-profit advocacy group, Autism NJ.
Chelsea:
I observe how the therapists react to my daughter. They don’t know how to deal with a child screaming on the floor, if they weren’t warned, they weren’t told, and literally run out of my house crying.
Paul:
It wasn’t until I got to this job that I was sort of introduced to severe autism.
And I was struck from the very beginning by both the prevalence as well as the seemingly lack of support.
The decisions that these agencies make are life-changing and just impactful in ways that can be devastating for an individual and family, and they seem to be able to get away with it.
The combination of the high rate of autism in N.J., plus the workforce crisis has put a tremendous strain on the system.
Chelsea feels like she’s been left to navigate it all by herself.
Chelsea:
She’s a little girl and I’m mom. I’m not her therapist. I am not her doctor. I am not her behaviorist. That’s why we pay these companies to help us learn to help our children with their behavior issues.
And she’s never, ever, ever been on so much medication than she is on right now.
Once the behavior therapy stops, the medications just kept piling up.
The constant care and constant battling for services has taken a devastating toll on the family.
Chelsea:
I had to give up my life. My husband has had to give up his life. There are no trips. There are no vacations.
It even affects—is affecting my marriage.
As Gianna gets older, Chelsea and her husband share growing concerns for her future.
Chelsea:
Give me a couple of years in puberty, I’m not going to be able to do it.
I’ve come to the state for help. I’ve come to people for help, and after a while you just start to lose yourself. You don’t know what to do next.
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