Who Should Pay the Disability Bill?

The Four Disability Buckets

Apr 06, 2023

Photo by Sixteen Miles Out on Unsplash

In a perfect world, our government would provide excellent services for free to people with disabilities. I hear tales of the fantastic care facilities for people with autism in the Scandinavian countries. There are resources to care for our children in our less evolved country, but it takes a savvy parent to navigate the system.

Keep in my mind the three main rules for treating autism: 1. More therapy is better than less therapy 2. Get the help earlier, but it’s never too late, and 3. Moms (mostly, but sometimes Dads) have to arrange for everything.

So how can parents work the system to get the right help for their children? They have to learn to utilize all the resources at their disposal.

There are the four buckets for therapy services:

Schools

By law, schools are supposed to provide an appropriate education and supplemental services to children with disabilities. But, as we all know, school districts really don’t want to pay for this extra help, and often parents must fight to get that help.

A child with autism might need modified academic instruction, speech therapy, social skills support, counseling, occupational therapy, physical therapy, and behavioral support. At different times, my son has received all that help. Your job is to make sure that your child gets all those services, if they need them.

The school day ends at 3:00, and there’s a lloooooonnnggg time before bedtime. Schools and communities fill typical kids’ afternoons and evenings with sports, arts clubs, town recreational activities, swim clubs, and homework. Typical kids also have friends to keep them occupied.

But the kid with disability won't have access to any of that. Ian’s teachers refused to assign him homework, even though he was happy to do those worksheets, and I begged for homework worksheets. So, school is never enough. It should be, but it’s not. So, the smart parent has to look elsewhere for support.

Health Insurance

Health insurance coverage for disabilities, like autism, has definitely improved in the past twenty years. And parents should research the benefits in their particular programs and use ever penny at their disposal.

Our policy has always paid for the traditional medical issues, like epilepsy, but autism is a grey area. I once made 30 phone calls to cover a social skills group - denied. And I had problems going to an expensive facilities like the Yale Child Study Team for a full evaluation - $4,000 out of pocket. But I am currently using our insurance to pay for speech and social skills and counseling services.

When searching for services, stay away from programs that promise too much and aim for the traditional services a large reputable companies. There are definitely a lot of charlatans in the autism industry.

Traditional programs provide real benefits for the individual and break up that large block of time between the end of school and bedtime. It’s never too late to benefit from these services. My 20-year old son improved BIG TIME this year from his counseling sessions and his social skills group. With one program going on every evening during the week, Ian always has a destination and social interactions.

Government

In our state, the government provides support for disabled children under the age of three and for adults at age 21. Between age 3 and 21, the state of New Jersey says that the school district is mostly in charge. They have a small program that supplements payments for respite care and summer camp. It’s not a whole lot of money, but I’m a big believer in picking up every penny on the sidewalk.

After age 18, your child is eligible for around $8,000 from the federal government. We use that check to pay for tutoring, clothing, college textbooks, and more.

At age 21, my son will qualify for state benefits in New Jersey. Every state is different and I’m still learning how the system works, but social workers have explained to me that he’ll be allocated money that will cover college classes, uber rides, social skills therapy, support workers, and specialized housing. They will even pay me to supervise his programming.

I spent two years filling out all that paperwork, but it was worth it. These programs will provide my son with a great deal of security, if anything should happen to us. Every family, wealthy or not, should enroll these children in this system.

Private

My son’s care could not have been managed without me. This care work was incompatible with full time employment. So, I have years and years of 0’s on my social security statements. The full amount of my lost wages is staggering.

In addition to privately managing the care of an autism child, we have paid for many, many services out of pocket over the years.

When his school didn’t provide him with an appropriate education, we paid for seven years of Kumon worksheets. Now, we’re paying for reading and writing tutoring. Private payment always provides better services, and it’s really the only method for getting academic support. Of course, schools should be doing this, but they don’t. You can waste all your time fighting or you can just give up and pay for a tutor like everyone else. Hell, surveys show that half of typical students in my town receive academic tutoring.

At some point, families have to make tough decisions about how much private money to spend on therapy and specialized schooling. Few people have limitless bank accounts. At some point, we have to say no and then not live with the guilt.

Bottomline

Parents, you must work the system. Get as much as you can from one bucket, and then go to the next bucket. Again, this is not how a perfect system works, but it’s the only way to get things done.