What are the financial implications of having a special needs child?

When you initially find out that you have a special needs child - there is absolutely nothing that can prepare you for the financial implications ahead.

The first step for the doctors will be to try and make and accurate diagnoses. In our case this involved various specialist consultations (none of which were located in our town), an extensive number of blood and urine tests, x-rays, CT and MRI scans, speech therapists, dieticians, occupational therapists, etc, etc, etc. Our first specialist consultation and MRI scan was on the 5th of August 2010 and on the 15th of August 2011 we eventually received a final and clear diagnoses (there are however still tests that need to be done and we will have to go back to the specialists for the interpretation of the results).

Needless to say, it has been a long and costly battle. The difficult thing is because of the fact that one is so emotionally involved you do not always think clearly about the financial implications. All you think about is the fact that you want the best for your child and if the next consultation, test and/or treatment can provide it; you do not even hesitate - it has to be done and you find a way.

In our case; it was actually one of my friends who asked me the one day – but can’t you register Miané’s diagnoses with the medical aid so that they will cover everything? That got me thinking and I immediately started talking to our broker. They have been very helpful to investigate and determine whether we will not be able to register the diagnoses under the prescribed minimum benefits list. We are currently with Medihelp and the consultants have also been very helpful. They have requested a letter from the treating physician which we will hopefully get today so that this can be finalized.

The treating physician also told me about the new benefit from SARS where you can register a disability and then claim any and all the expenses relating to the disability. I have to be honest – initially it was very difficult for me to get my head around registering Miané as being disabled. But stepping away from the situation and eliminating emotions for a minute; I realized that this could really help us. We can now reduce our taxable income with all these expenses and because of this, we will be able to afford the absolute best for her.

Believe me – it has been so difficult; making these decisions means that you acknowledge and accept the diagnoses.

We have not yet finalized everything – but I do not envision any problems. It has however been a huge relieve not to have to worry about the money; now we are able to focus on everything else which is actually important.

Why did I start the blog?

It is always difficult to come to terms with something like this; your child being diagnosed with Sotos Syndrome.

I have to be honest when it was first mentioned; at the age of 4 months that her development is delayed; we thought "Ag really, how are you able to tell...". At the first mention of Sotos; our reaction was even worse; question arose like:
1. She does not have all the signs
2. Some aspects of her development is on track
3. There is no history in our families
4. Etc.

It was really difficult to accept. When the big milestones like crawling, talking and walking came (she is still not able to do any of them); it was even more difficult to spend time with our friends whose children are around her age.

I found however that it is extremely important to talk about it, to share it with those close to you and to find people who are experiencing the same as you. I have found numerous organizations in both the US and Canada but nothing in South Africa.

This is my attempt to start discussions and learn from each other, to support others and also get support back, to share the difficult and celebrate each milestone reached - no matter how big or small.

How we got here?

Since birth, my little girl; Miané experienced various difficulties and was hospitalized regularly. At the age of 4 months; during one of her hospital visits, our pediatrician indicated that it seems as if her development is a bit slow. He referred us to a Pediatric Neurologist who examined her and after MRI scans indicated that he suspects Sotos Syndrome; but that the diagnoses is foggy and that he is not 100% sure.

We started with occupational therapy at the age of 5 months and went back for a follow-up at 9 months. Again, the doctor indicated that he cannot be 100% sure and that the diagnoses still seems like Sotos but still there is something that’s different and that we need to come back for a follow-up at the age of 15 months.

We then decided that we need a second opinion and made an appointment with Dr Griessel in Bloemfontein. We went to see him for the first time on the 17^th of June 2011. He requested a number of tests and indicated that upon completion we need to see a Genetics Specialist for final diagnoses. The tests ordered (especially the metabolic screen) took weeks to complete. We went to see the Genetics Specialist on the 15^th of August 2011 and got the final diagnoses of Sotos.

At least know we know; we have a long road ahead of us – but we will get there!