'Families are in crisis. . . I’ve never seen anything like it before'
Sept 30, 2024, N.J. children with severe autism need more help NOW. Where is the sense of urgency from the state?
VIDEO: 3:07 https://www.youtube.com/watch?v=soGR4zP4sQM
Chelsea:
My daughter is an example of how we’re just wasting time. We’re wasting time on a child who needs the help now.
7-year-old Gianna is one of 18,000 children in New Jersey living with severe autism.Due to the strain on autism services in N.J., her therapy hours have been cut.
I feel completely lied to. I feel outraged, because we are the best state to deliver these services to children.
Without the behavioral therapy, I don’t know what’s going to happen to my daughter.
And essentially she’ll wind up probably going into a hospital or facility because she’s only getting bigger and stronger.
Gianna’s parents are desperate for help and they’re not alone.A 2023 state report detailed the critical shortage of trained therapy professionals in the state.
Paul Aronsohn, Ombudsman:
We know a lot of people have fallen through the cracks. We know a lot of children are going without the services and support they need and deserve.
These families are in crisis
Chelsea says no one has taken responsibility for the cut to her daughter’s therapy hours.Not Gianna’s therapy center.Not the state.
Chelsea:
I feel that my daughter is going to hurt herself, possibly hurt me or my son. I know she’s capable of a lot of things, and I don’t know. I don’t know.
Gianna is prescribed 15 hours of therapy a week.The center she attends started cutting back her therapy in November 2023.By summer, she was only receiving 1— 3 hours a week.
Aronsohn:
A day in the life of a child is like a year, and so much can happen. And you don’t get that back if you don’t have the right therapy.
New Jersey’s ombudsman says there are blatant shortcomings in the system.One of the most frustrating issues is the lack of resources for parents when their child’s services are cut.
Aronsohn:
Your only recourse is to go to an administrative law court. You can appeal it, but that judge’s decision is not binding. So there really is no recourse. There’s no consequences in our system.
I’ve never seen anything like it before.
These families are so beaten down. They don’t have their bandwidth, the physical, emotional, not to mention financial bandwidth to sort of carry it on.
The ombudsman is urging state leaders to intervene.He says they need to standardize training and make improvements to ease the workforce crisis among therapy professionals.
Aronsohn:
If we paid them a living wage, if we provide the right amount of training, the right levels of training. If we hold them to the right standards, we’re going to have less turnover. We’re going to have less vacancies.
If Gianna’s family can’t access the services she needs, and if the system stays as it is, Gianna’s parents could be faced with an unbearable choice.
Chelsea:
I have to look at both of my children. Do I want to put my daughter away in a home? No.
But is it my fault that New Jersey failed me? No.
They know about this child, and nothing has been done, absolutely nothing but take away.
I hope somebody sees this and helps me hold somebody accountable. Because with my daughter’s diagnosis, I’m trying to enjoy what I have with her.
If you’re caring for an autistic child in New Jersey, and you need help with services, there are resources available.Autism New Jersey Helpline800.4.AUTISMOffice of the Ombudsman for Individuals with Intellectual or Developmental Disabilities and their families 609-984-7764
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