Paying For Therapies: Cash, Government, Insurance

Earlier in the month a friend had a discussion going about government mandated insurance.  She eventually asked me my thoughts.  Here are the questions followed by my response.

So do you agree with your state's law mandating autism coverage? And for families without private insurance, do you think the state (federal, state or local government) should assist families who can't shell out tens of thousands of dollars for their children's autism treatments? I have to imagine that you have mixed feelings about these questions given your political beliefs.

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Sheryl Johnson You're right. I have very mixed feelings. If I die tomorrow, would my kids be able to live independently? Maybe. We are thousands of dollars in debt. We have not let $$ be the reason to not do something for our boys. However, we haven't thrown $$ into every new idea/fad out there. Parents of special needs kids are desperate to find a cure, solution, therapy, anything to move the kids forward.

My kids have private insurance as well as state coverage. The state coverage is minimal, and it can be revoked at any time. That has happened too. Can't rely on it. When a service has been cut, we've paid cash to continue the therapy if it has been successful. The school and state have provided therapies, such as speech and hab, and they have helped my boys tremendously. 

The flip side is having to follow the regulations set by the school and/or state. Children, well, people don't fit into nice rows and columns, ie rules and standards. Special needs children fit even less. Everything needs to be individualized. My kids are a great example of this. Three have autism. The standards cannot be applied equally to them, because the autism symptoms are different in each one. Due to govt regulations, though, the same set of applications has to be administered to each kid--whether or not it is working--which can be a waste of time, hence money. It frustrates the therapist and child.

Then there are meds. Typical medical protocol is to medicate my kids--especially when they were younger. The meds just doped them up. After 2 years, we took them off. I did a ton of research (and I still do). Alternative therapies have proven much more successful. Insurance doesn't cover these. Doctors don't necessarily agree with me, or each other in this realm. As MOM, I have the responsibility to do what is best for my kids. So I am self-employed to stay at home. (husband works full time) We pay cash for what my kids need. If you have known my kids for the last 10-14 years, you can see the progress.

So here's the catch 22 syndrome... yes govt funded services help financially and therapeutically to a point. If my kids were stuck with govt restriction and typical medical protocol over the years, they would not have made any progress and most likely would be on some sort of govt program permanently. Yes, having freedom to research, choose, and pay privately has allowed our kids to thrive and prosper. More than likely, they will not need govt support as they move out of the house.

Tis typical for a family to pay $15,000 annually for a child with autism,. I have 3 kids. Do the math.  Here are the results.  One has totally recovered--no services from school or state. The other 2 have minimal assistance from the state, and one of those has some help from school--the other is moving on to college. We are slowly paying off our debt. Our children are thriving. It is a sacrifice, but that is what parents do. I can also go on and make comparisons of some govt services vs private services... but I think this is long enough. And this is just a touch of what I could write.

Joining The Workforce--Again

Yep.  I am working full time again.  Life with autism isn't cheap.  Therapies, foods, doctors, supplements, etc. are expensive.  Insurance doesn't cover a lot of what we do.  However, the boys have thrived best with what insurance doesn't pay.  Figure that one!

SO the saving account is depleted.  The credit card balances are climbing.  A financial adviser would think that we are insane.  Nonetheless, Mike and I agreed long ago that we'd do whatever we could for our boys--to help them learn to be independent.  Money would not be an object.  Our boys are priceless!

The most expensive  item we ever purchased for the boys was the pool.  The doctors and therapists all agreed that a pool would be the best therapy for the boys.  We were not disappointed.  The boys learned to swim.  They played and socialized. They received their physical therapy in the pool for a few years. Now they hang out in the pool.

Getting back to work--I've been working at the same place for about six years.  It is seasonal, temporary, full time work. It's good to exercise my brain. I work on projects.  This current project is scheduled for five weeks.  I have worked here long enough to make friends.  The "regulars" are like a family.  Of course, as in all work places, some people are more important than others.  It is good to connect with these people.

Last year I had the opportunity to work from home.  It was great.  It was bad.  I loved being able to work at my leisure.  I actually took off to the beach last year, and I was able to work at coffee house, at the beach, or at any quiet place I chose.  The bad part was having to discipline myself to follow a work schedule--even if it was the schedule that I set.
 
After this project, I'll be able to pay off a credit card.  That is the upside.  The downside is life is more chaotic, but that is good for the boys.  They are learning to do things on their own.  I am always surprised as to what they have done.  Or not done.  I am not saying the surprise is always good, but yes, I am always "surprised".  HAHAHA  A good, no-- a great sense of humor helps in this realm.

Yes, I do look forward to payday!