This Autism Awareness Month, I am bringing light to the fact that the adults and children diagnosed with autism are not merely statistics. Each and every person with autism is wholly unique and deserving of personalized support.
Autism Awareness Month 2023 Recap: Autism Awareness Month 2023 – The Facts
The New Jersey Comprehensive Assessment Tool (NJCAT) acts as a sort of one-size-fits-all method for determining the amount of support New Jersey residents with disabilities receive from the Department of Developmental Disabilities (DDD). And while the NJCAT can be a helpful tool, this assessment often disregards the individualistic information necessary to make fair evaluations.
What Is the NJCAT?
The Division uses a standard assessment to determine eligibility and to help Support Coordinators and providers understand what services are needed. This information is gathered using the New Jersey Comprehensive Assessment Tool (NJCAT). The NJCAT evaluates the need for support in three main areas: self-care, behavioral, and medical. The results also establish the individual’s tier, which determines the annual budgets that will be available for services.
How Does the NJCAT Work?
The NJCAT consists of over 60 multi-part survey questions, many of which can only be answered in a yes or no format. The questions range from general multiple-choice ones like
“Would you describe [name]’s autism or autism spectrum disorder as mild, moderate, or severe?”
to more abstract questions like
“Does [name] show enjoyment/sadness about what he/she is doing — or does [name] keep feelings of enjoyment/sadness to himself/herself (i.e., you can’t tell if he/she is happy or sad)?”
The sole options for answering the latter question are:
- Shows enjoyment/sadness
- Keeps enjoyment/sadness to self
Aside from the fact that every situation is different, this assessment fails to admit the existence of emotions like anger, love, frustration, and a range of others people may experience on a daily basis. This is just one example of how the NJCAT can easily misinterpret results due to a lack of relevant information.
Once the NJCAT is completed, a computer algorithm scans the answers and mathematically determines which tier to assign the individual. The tier determination is made by programmatically assessing several areas, including but not limited to:
- Cognitive capabilities
- Self-care and independent living skills
- Communication skills (verbal)
- Physical capabilities
- Social-emotional function
- Medical issues
Five base tiers ranging from A to F and five acuity-based tiers ranging from Aa to Fa will define:
- The portion of the DDD’s budget allocated to the individual
- The rate certain healthcare providers will receive for their services
There Is No One-Size-Fits-All Solution for New Jersey Individuals With Disabilities
The NJCAT does not take rare medical conditions and various other mental and physical health issues into account. As many of you know, my son Aidan battles with DiGeorge syndrome, a severe immune deficiency disorder. DiGeorge syndrome affects less than .0003% of the US population. And sadly, because there is such a low number of people diagnosed with DiGeorge syndrome, generic assessments like the NJCAT cannot provide an accurate analysis of my son’s needs.
DiGeorge syndrome is just one example of the many instances that demonstrate how the NJCAT can fall short. We cannot rely solely on an algorithm to establish the support and assistance given to individuals with disabilities. I am not saying that the NJCAT is useless; however, I am saying that if we are going to utilize it, it must be utilized in combination with more holistic, personalized assessments. How can you effectively support someone you do not fully understand?
This Autism Awareness Month, I urge you to see individuals with disabilities as more than just statistics. See them and know them for who they are. Whether they are brothers, sisters, sons, or daughters, they are all members of our community.