Before I start talking money, I want you to understand we are not the "haves" nor are we the "Jones's." We are just an average American family. Also, let me make it clear that I am not telling you what to do with your money, I'm simply telling you what we did with ours. I'm hoping by sharing some of the struggles we faced, that you won't feel alone and potentially, you will be alerted to some problems you may want to avoid.
I actually learned a few things researching how you are classified according to wages. According to U.S. News and World Report, middle class" isn't a thing, you are either "lower middle class" or "upper middle class" (so to be more specific and a bit confusing, we are upper than lower middle class, lower than upper middle class). To be considered "upper middle class" your wages must be in the top third of wage earners in any given year. In America, that means your income for a family of four would be well over $100,000. My husband works and I'm a stay at home mom, we are a family of six (not four), and we wouldn't meet that $100,000 income level anyway. So there you have it-as detailed as I'll get about our income.
When you are in the midst of parenting a child(ren) with special needs, you would think that the last thing you should have to worry about is how much money you are spending. I would tend to agree; however, financial concerns are a reality. Therapy can be expensive. Some tutors charge exorbitant rates. Specialty doctors may not be covered by insurance. All I know is there isn't a money tree in my back yard, and if you have one in yours, please invite me over.
Parents are generally the first ones to realize that there may be a problem with the development of their child. Chances are, you won't know exactly what is wrong and you will need to depend on experts to help you Here is some of what we have learned along the way:
When you are first getting a diagnosis:
Spend the money to keep your pediatrician in the loop; make your pediatrician your home base and let him/her coordinate your care.
At the beginning of the diagnostic process, you will spend a lot of time with your primary care doctor. If your physician isn't listening to you, perhaps you should find a new provider. You will be spending more time than the average person with this doctor between well care visits and additional conferences. The office can potentially bill you for a "level 5" appointment instead of a "level 3." Your insurance company may or may not like this; therefore, there is the potential for a bill to come even after you have paid your co-pay. Primary care doctors know a little about everything, but aren't experts in each special need they will encounter. They will more than likely recommend testing with other doctors and/or specialists. Make sure you keep good records of results from each professional you see. Yes, the pediatrician's office will get a follow-up letter about any outside appointments, but do you know what happens to those letters? In my experience, they are looked over by an office clerk and if they are non-emergent, they get filed in the chart. The doctor will look at them during your next visit. This is why you need another visit! Yes, it's another co-pay and let's not forget the value of your time, but it's worth it. Does your doctor agree with the diagnosis? If you didn't receive a diagnosis, where should you go from here? Have you read something, based on your appointment with the specialist that you would like to share with your doctor? What are your next steps? All the other specialists you see will be counting on the information you give them and their own evaluation. Your pediatrician will be the one (aside from you) that will be looking at the big picture of the whole child.
Spend the money on the initial evaluation. Don't let finances be the reason you fail to do recommended testing.
You may not have a money tree, but you do need to know what's going on with your child. Listen to your doctor's recommendation on what testing is needed and where to go for that testing. If you find that place isn't covered by your insurance, call your pediatrician's office back and let them know what IS covered and let them choose from that list. If you can't afford to pay out of pocket, your doctor's second choice is still better than not knowing. A diagnosis can come as a relief to parents-but it can also assist you in getting the needed help for your child from state and county agencies or your local school district.
Spend the money on a second opinion If the diagnosis doesn't seem to fit or you (or your pediatrician) question the validity of test results, seek out a second opinion. In many special needs cases, there are symptoms that overlap, as well as a subjective component to diagnosing. Many special needs cases aren't cut and dry.
I will tell you, from first hand experience not to believe everything a doctor says just because he went to medical school. We went to our local children's hospital for a diagnosis for our son. It was suggested by our pediatrician, and happily, covered by insurance. We had heard very mixed reviews as far as people's experiences at this particular center. When we received the test results, we knew instantly that we would be seeking a second opinion. You see, we were given parenting advice, told we were not good disciplinarians, and because of that, our son had a behavior problem in addition to his very low IQ.
Having lived with our son for two and half years, we knew he was smart as a whip and because we had never encountered a problem with our other two children, who we had disciplined the same way, we didn't think it was really a parenting problem, either. His diagnosis didn't sit well with us. We did some research to find reputable diagnosticians in our area, and we returned to our pediatrician to let him know we would like a second opinion and to seek his advice on which of the doctors on our list he would recommend to do that testing.
Spend the money on suggested follow-up appointments. "Red flags" need to be watched. You will not know if those "red flags" are still an issue if you don't attend the follow-up appointments.
We found a great psychologist, who specialized in the diagnosis of autism, to evaluate our son at age three. She saw many "red flags" for Aspergers, but said she simply wasn't comfortable diagnosing him due to his age. Our son could grow out of what she was seeing. He did not fit the diagnostic criteria for classic autism. At the time, the doctor knew he was enrolled in several therapies to deal with another similar diagnosis, and because they were the same interventions that she would have recommended had she given the diagnosis, she was certain that waiting would be okay. We were really hoping for a definitive answer, but rather than put a label that was not necessary on our child, we agreed to return in a year. At age four, the "red flags" were still present; however no diagnosis was given, though she did recommend enrolling him in a group to work on social skills. We had the same experience when we went in the following year when our son was five. At age six, he was finally diagnosed with Aspergers. By the time he received the diagnosis, the doctor was certain. In my eyes, she actually gained credibility for seeing him many times over the course of many years and not slapping on a diagnosis and moving on.
After you receive a diagnosis:
Find out what is covered by your insurance company-Ask lots of questions.
If therapy is covered (and that's a big 'if') how many visits do you have and what is your copay? Does your deductible come into play? What is the difference in coverage between in-network and out-of-network providers?
Our insurance company would only cover speech therapy if your speech issue was due to trauma to the jaw or face and/or malformation of the mouth. They would not pay one cent for developmental delays, nor would they pay for speech therapy due to a hearing loss. Occupational therapy was limited to functional (fine motor) with a specialist co-pay ($40 a pop); limit of 16 visits per calendar year. That wasn't what we needed from occupational therapy...we needed sensory issues addressed way more than fine motor (at age 18 months)! So, the insurance was basically useless for us.
Look for programs available through your county or state government or your local school district
By the time someone told me to do this, my child was already over the age of three, but Help Me Grow is a great federal program, available in every state for children with delays ages birth-three years old. At age three, the school district will evaluate, and serve any child that qualifies as a child with special needs. Our County Board of Developmental Delays has program for children and adults with developmental delays. Our state has a Bureau for Children with Medical Handicaps with two branches: one for diagnostics and one for treatment. Any child with a qualifying handicap, who sees a plan doctor, will be covered for diagnostics, but there is an income restriction for treatment.
These are all programs I had heard about, but I never thought any of my children would qualify based on the lack of severity of their needs. After doing additional research, I learned that there was help available for my children, and while our upper lower middle income did not allow us to qualify for the full extent of each program, there were portions for which we did qualify.
If you can't afford all the recommended treatments, do what you can. Any intervention will be helpful. Obviously, the more you can do, the more it will help. Here is where your pediatrician and other diagnosticians can help you prioritize what would be most beneficial for your child. We were paying more each month for therapy and tutors than we were on our mortgage, plus the gas to get from place to place. We had done extensive research about the benefits of early intervention. We decided that the benefits of getting therapy in place early was worth any sacrifices required of our family. Our family thought that if we could get at the problem early, it would save us time and money down the road since we were told intensive therapies working together would accelerate the process of each therapy. We enrolled our son in occupational therapy at age two, but the time he was four, we had six different providers working on the same skill sets, each in their own way. He did qualify for occupational therapy and speech through our county board of developmental delays, but even with those two things covered, we spent $226,547 on doctors, therapy and interventions between the years of 2006-2009. We were just talking about if we would have changed anything about what we did when our son was little and the truth is, I don't know. We did what we honestly believed was the right thing at the time, and we look at how far our son has come as a result of the early intervention, it's hard to argue with the results we see. It's also hard to argue with the bills we still see each month, which leads me to...
Things we learned the hard way:
You have to have a life outside of therapy
If you take all your available funds and sink them into therapy, you may miss out on some great everyday teachable moments. We took our "out to eat" budget away, spent our vacation budget, abstained from pool membership, quit the gym, had no cell phone-went down to the absolute basics in order to pay for all the recommended therapies.
If you have to charge treatments or therapies, you can't actually afford them.
Honestly, we thought this was brilliant. We wanted the therapy now and could pay on it until kingdom come. The problem is, the more you charge, the more the minimum payment is, which means you have to pay more each month. Then you don't have as much available as you once did to put toward therapy; therefore, you charge more. It's really a horrible cycle that you would think one with common sense would not fall into, but if that's the case, we don't have common sense. The thought that something might help you child can easily cloud financial judgement. Many other parents of special needs children have struggled with this issue of making treatment decisions weighed against money concerns.
Debt is bad. Dave Ramsey is good.
By the end of 2008, we were over $78, 000 in debt. That number was comprised of one small car loan of $9,000, debt that we were carrying before we got the bright idea of charging therapy in the amount of $3,000, and $63,000+ in debt and interest racked up for paying out of pocket for the best therapists and tutors that money could buy...and we were still charging-after all, this was our son's future.
The only reason I know the dismal state of our finances at that particular time, is we decided that there had to be a better way...we decided to take a class at church, taught by one of the members who had been through Dave Ramsey's Financial Peace University. During the second class, she asked us all to bring any credit cards in that we would like to ceremonially shred. We took a step of faith that day, and with nothing but a mountain of debt, we shredded each and every one of our credit cards. We have been working the plan since spring of 2009. We have used our emergency fund about a thousand times and had to go back and build it back up. We didn't do some of the radical things that Dave Ramsey suggested in his book Total Money Makeover; however, we have slowly but surely been chipping away at our debt. We will be totally debt free (except for our house) by the end of 2015. With interest still accumulating, we are paying an average of $15,000 of debt off each year on one salary. I'm not saying "hey, look at me, I'm wonderful!" it's more like I'm saying, "hey, look at me, I'm a cautionary tale." Sure, we are choosing to drive older cars, and choosing not to spend our money on certain indulgences, but in a couple of years, we will not have the burden of carrying debt.
If you don't like Dave Ramsey, find someone you do like. Or if you just need it boiled down for you, here it is...spend less, pay off debt. However you can make that happen will be great.
Let your doctor know if money is an issue.
Having a child with special needs is EXPENSIVE. You may not be in a position to afford every cutting edge treatment that there is, but do what you can with what you have. Your doctor may know of even more programs available to help with the costs of what they are recommending. They may choose a different course of treatment, or perhaps allow the pharmacist to use a generic when normally they would prefer a certain brand. Doctors are people, too and they understand there is no money tree in your backyard, either-though I am going to keep looking...
Check back for my next entries in the "what not to blog about" series:
1. "God, can you choose someone else" where I will share an exert from my friend, Mary Evelyn's blog
2. "the role of the church" where I talk about church-isms and realistic expectations of a church
2. "the role of the church" where I talk about church-isms and realistic expectations of a church
3. "Jacki Raabe goes to Washington" where I will discuss very polarizing topics such as vaccination, school choice, special diets and more.
No comments:
Post a Comment