Medical Treatment on a Budget
By Holly Bortfeld
A lot of people ask, “Why are medical treatments so expensive?” We are at an exciting time in medicine for autism as we are learning more every day about this disorder and its co-occuring conditions. Sadly, science is much slower than we would like and insurance coverage is even slower. Having no medical conditions in the diagnostic criteria for ASD means that there are no approved “treatments” for autism, nor are treatments for autism related issues easily covered by insurance, until you learn how to bill insurance along those guidelines.
This is a very frustrating situation. Parents have been working in many states to get autism parity legislation for health care coverage but we hope the following will help parents control the costs of treating their children medically.
Here are some suggestions for you to consider:
- Educate yourself. Learn how to research treatments and determine if the chances are good that your child will respond to them.
- Know your child. Keep copies of all medical records. Learn what the external signs of conditions look like in your child so you can report and treat them properly.
- Use your insurance for all doctors and labs possible. Code treatments for the actual disease, not the autism umbrella.
- Use your state’s Medicaid or waiver programs to cover what the insurance company doesn’t.
- Find out if your insurance will cover compounded vitamins and supplements. Start with trial-sized bottles of vitamins first to see if your child will tolerate them before you spend a lot of money.
- Cook your own special diet foods. Cook from scratch, or like people used to cook before stuff came in boxes.
- Never start more than one treatment, of any kind, within a 2-3 week period.
- Get your local insurance-covered pediatrician to rewrite the DAN! doctor scripts so that your insurance will cover them.
- Don’t keep wasting time and money on any doctor or treatment if you are not seeing results.
- Find creative ways to pay for your medical treatments – bake sales, bartering, grants, family gifts, etc. and write it all off on your taxes.
Read books, websites and use the medical libraries at your local hospitals (these are often open to the public for free). Read about treatments, lab tests, and information you wish to discuss prior to your doctor appointments. Use the appointment time to discuss the treatments and review what you know. Come to the appointment with an agenda and stick to it! Try not to use this time to educate your self from the beginning about a treatment concept as time is money.
Create a profile for your child through his/her test results and responses to treatments. Learn what it means if your child has poop that floats or what that ammonia urine smell means so you can report it accurately to the doctor and treat it in a timely manner. Keep a journal when trying new treatments of any kind. Keep copies of every lab test, doctors appointment, from therapists, from school IEPs, etc. Scan them all to CD for safekeeping and ease of records tracking. If you haven’t kept old records already, go back to all past practitioners and get record copies before they are destroyed.
Unfortunately, not all doctors accept insurance, especially in autism. If you need a doctor who takes insurance, vote with your money and only use them. Explain to the doctor that you need to use insurance-covered labs whenever possible, not the boutique/specialty labs unless there is a really good reason and then they need to limit those to fit your budget. If the doctor is not willing to work with you on this, you might need to consider finding a physician who can help you help your child without bankrupting you.
Coding is a very important part of medical insurance reimbursement. Bad coding can get your entire visit refused. Never bill anything under autism, as there are no “treatments” for autism. Our children have co-occuring medical conditions, like constipation, allergies, etc. that need to be treated. The tests and treatments for these conditions need to be coded for the actual conditions; you are much more likely to be reimbursed. There is a great YahooGroup to look for help too at https://groups.yahoo.com/neo/groups/autism_insurance_information/
Labs. Find out what the lab charges the doctor to submit the lab and then, what they bills you, versus what the lab would charge you if you ran it through insurance or if you prepaid for it. Labs are usually half the cost if you prepay them!
Often parents are told “we don’t cover that for autism” by insurance companies but remember, since there are no medical issues listed in the diagnostic criteria for ASD, you (and your doctor) should never put dx code 299 on any lab test slip. It is also important to read about an important California law, AB88, about “equal parity for insurance coverages”.
Medicaid programs usually will not cover any autism “specialists,” tests or treatments, but they will generally pick up co-pays for visits and prescriptions and lab tests performed at hospitals. Bill your primary insurance first, and use the Medicaid payer as a last resort. Remember, Medicaid is state-specific so you can only use it in your state or in a neighboring state if your state has a reciprocal agreement with the other state. You can get a copy of what the state covers from your caseworker or from each state’s Medicaid website.
Some insurance companies will cover vitamins and supplements if you have them compounded into liquids or powders to fit a prescription from a physician. Some of the better supplement companies offer samples or trial sizes of their products, which you can purchase to see if your child can tolerate them before purchasing the larger bottles.
Do you remember seeing your grandma cook dinner when you came to visit? There were no boxes. Just real, whole foods. Cook a meat, a vegetable, and a starch per meal. It’s much cheaper than anything pre-made or partially already prepared. Cook in large batches and freeze anything leftover for those nights when you really aren’t in the mood to cook. Buying special flours in large quantities and making your own mixes is considerably cheaper than buying premixed mixes too. I make my own mixes for muffins, cookies, breads, etc. I do this every few months, and they are quick and easy and tailored to my child’s tastes and allergies. See GFCF on a Budget.
If there is a problem, you need to know what is causing it. By trying one treatment at a time, you’ll know exactly if that one new treatment is causing the problem rather than stopping everything and starting all over again if there are too many treatments to track responses/reactions in your child.
Starting with a new doctor can be overwhelming enough, and trying to deal with possibly twenty new supplements or treatments all at once doesn’t help either! If you try to start them all at once and if you child reacted badly to even one of the vitamins, you won’t have any idea which one vitamin/supplement was the problem. This will cost you a lot of time and money. You will have to stop EVERYTHING and restart them one by one and keep a journal of your child’s reaction to each. You don’t want to overburden your child either. Think smart, think long term, and go slowly.
If you must use a specialty doctor that isn’t on your insurance plan, or a specialty lab, find out if your insurance covered physician is willing to rewrite the prescriptions so that your insurance will cover the tests and/or treatments. Make sure that copies of all tests go to both physicians and that you keep both updated on any treatments and reactions. Please see #3 above about coding.
Just because a doctor says, “Ninety percent of my kids do well with this,” doesn’t mean your child will be one of that 90%. If you feel like your child is doing poorly with a treatment, don’t be afraid to tell your doctor you want to discontinue the treatment. Remember, they work for your child, and if your child is not improving on that treatment, pull them off. If the doctor refuses, then it might be time to find another physician.
Not all resources/doctors are perfect in their bedside manner, treatment protocol, and/or experience. That is why it is sincerely recommended you read about managing professionals and the parent bill of rights.
There are many creative ways to fund your medical treatments. For foundation grants, search google.com for “foundation and autism”, or “foundation and treatment”. Bake sales, car washes, pancake breakfasts, and spaghetti dinners usually generate a nice amount. Asking that all family birthday, anniversary, Christmas, and other presents be in the form of payment to your doctor, or cash for like purposes, works too! If you have a skill that the doctor needs (cleaning the office, filing, etc.), you might be able to barter services with them. Look into medical and health savings accounts too. If all that fails, pull your 401K or savings. Don’t forget that most of this is tax deductible too so check with your tax advisor.