The Special Needs Industrial Complex
I know from experience that parenting a special needs child can be emotionally draining and financially stressful. In this article, we will lay out the fees and costs of having a special needs child.
As a financial planner, I found surprisingly little information about this topic. There are articles and resources out there on how to plan financially for a disabled child via Special Needs Trusts or ABLE accounts, but what about the “early” costs of diagnosis and therapy for younger children?
“Special Needs” can mean a lot of things, and my experience relates most to conditions that are not always easy to identify, such as ADHD (Attention Deficit Hyperactivity Disorder), ASD (Autism Spectrum Disorder) and SPD (Sensory Processing Disorder).
This article tells our story and will hopefully provide help to other parents struggling with these issues. I call it the “special needs industrial complex” because there is a whole world of therapists, consultants, administrators and lawyers out there that I did not previously know existed.
Our Story
There is a six-year age gap between our older son and boy/girl twins. While we try not to compare our kids, it did seem the younger ones were young for their age but still in the “every child is different, so no need to worry” range in terms of milestones.
As they transitioned to a new environment in Pre-K (about 2 years ago), the differences became more apparent (trouble keeping up physically and academically) and also more problematic (meltdowns, difficulty with transitions, anger and frustration).
We knew something was going on, but what?
Unfortunately, our school was generally well-meaning but “too little, too late” in every regard. We needed to figure this out on our own. And twice, because twins!
What to Expect
For a while there, figuring this stuff out was truly a full-time job (on top of all my other jobs …)
After all my time reading, researching and living this, I still don’t claim to be an expert, but know that the three basic systems as your child grows (in New York at least) are:
Early Intervention (EI)
Committee on Preschool Special Education (CPSE)
Committee on Special Education (CSE)
We started seeking resources in preschool. For children age 4 and under, you can request a CPSE assessment from the Department of Education. You need to write a letter stating the reason for concern. A valuable tip I received was to go *in person* to the Board of Education in Downtown Brooklyn. I’m sure this sped up the process by several weeks.
When you receive the approval, you get a list of places where the assessment(s) can be scheduled (and paid for by the Board of Education). This may include multiple assessments:
Occupational Therapy
Physical Therapy
Educational Evaluation
Classroom Observation
Psychological Assessment
Speech and Language Evaluation
While you are waiting for that process to play out (it took many months for us), you may want to seek resources on your own. (With the semi-closure of many schools due to Covid this year, I suspect there will be a lot of pent-up demand for these services). For us, these included:
Occupational Therapy: twice a week
SEIT (Special Education Itinerant Teacher)
Behavioral Psychiatrist
Consultation with Special Needs Consultant
Consultation with Special Needs Education Attorney
Additional Child Care: needed for other kids while I took one to various appointments
Additional Medical Testing: Allergist, Lead, Lyme Disease
Scheduling and transporting two preschoolers to assessments (occupational, psychological, educational, physical) and doctor appointments (pediatrician, allergist, psychiatrist, ophthalmologist), and occupational therapy twice a week was expensive and exhausting. Just writing about it is stressing me out!
If you are lucky enough to have proactive educators who are able to assess your child’s needs early, you can receive wonderful resources at no cost through the public education system. That’s where we are now.
There is some bureaucracy and time involved to get an IEP (Individual Education Plan), but once you do, your child may be eligible for many special education programs. Some supports, therapies and resources may now be provided on site and for free at your school. Sadly, I suspect that the level of resources available will depend on your individual school or school district. I am incredibly grateful for our new school.
What Worked for Us
Little by little, it got better. And while I tend to be a mom who worries, they are really all doing fine. How did we do it? Here are the main factors that come to mind:
A change to our environment. Since we’ve been spending time at the beach since before the kids were even born, it was also already apparent that more fresh air and space to run around outside resulted in 1/10th the number of tantrums. (A year of construction and jackhammer sounds on the building next door definitely made things worse!) Although much of this post is about our experience with the “system” in while living in Brooklyn, the fact is that we left the city.
A slowdown at school. Because their birthdays are late in the year, the grade they are in would actually vary depending on their school district. A smaller school district was able to be flexible enough to allow them to start with pre-k instead of kindergarten. I believe this did wonders for their confidence and readiness to succeed.
I fully realize that most parents don’t have the option to up and move to a bigger space with a great school. So many other things helped us as well.
Books such as Raising a Sensory Smart Child and The Out of Sync Child helped me better understand their needs.
Occupational Therapy literally helped my kid feel more comfortable in (and have control over) his own body. This includes things like climbing and jumping (gross motor) and handwriting (fine motor) skills.
Lego kits were a great way to focus attention. (Grateful to the sitter who had the patience for that!)
Changes to diet and a focus on sleep (aim for 11 hours!) were also a big help.
I will add that a Labrador Retriever makes a great (unofficial) therapy dog!
Words of Advice for Parents of Special Needs Children
It can be a real struggle to understand your special needs child and how to help them thrive.
Ask for help early. Could we have talked to our pediatrician about early intervention and saved ourselves a ton of trouble, stress and heartache? Maybe. I’m just glad we started when we did and waited no longer.
Access your Community. Many of our clients are local parents, and conversations about the needs of their kids are part of the financial planning process. I was lucky to know a few parents who could recommend resources or at least point me in the right direction.
I also learned a lot from lurking in Facebook groups, such as the Sensory Processing Disorder (SPD) Support group. I’ve bought a ton of things based on the recommendations of these parents, such as weighted vests and blankets, a mini-trampoline (100 trampoline jumps really do reset the mood, LOL), a Visual Timer was a godsend for getting kids out the door, and even clothing recommendations for kids who can’t abide tags or “crunchy” fabrics (Cat & Jack from Target never fails me). I would have never heard of most of this stuff.
Prioritize Emergency Fund. Figuring this stuff out was stressful, time-consuming but also expensive. Many of these expenses are eligible to be paid from your Health Savings Account (HSA) if you have one. If you think this may be an issue, try to prioritize a cash cushion. Adding credit card debt to an already stressful situation doesn’t help.
Breathe. This added level of stress can be tough on relationships. There are statistics out there about higher divorce rates among parents of children with special needs. Take care of yourself too and know that you are not alone.
