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-occurring 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 pass autism parity legislation for health care coverage but we hope the following will help parents control the costs of treating their children medically:
1. Educate yourself. Learn how to research treatments and determine if the chances are good that your child will respond to them.
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 face-to-face time with your doctor to educate yourself about the basics of a particular treatment, because time is money.
2. Know your child. Keep copies of all medical records. Learn what symptoms look like in your child so you can report and treat them properly.
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 records, including every lab test, instructions from doctors, notes from therapists, IEPs, and progress reports. Scan them and keep a digital record for safekeeping and ease of tracking. If you haven’t kept old records, go back to all past practitioners and get record copies before they are destroyed.
3. Use your insurance for all doctors and labs possible. Code treatments for the actual disease, not the autism umbrella.
Unfortunately, not all doctors accept insurance, especially those who specialize in autism. If you need a doctor who takes insurance, vote with your money and only use them. Explain to your doctors that you need to use insurance-covered labs whenever possible, unless there is a really good reason. If the doctor is not willing to work with you on this, you might need to consider finding a physician who can help you without bankrupting you.
Coding is a very important part of medical insurance reimbursement. Bad coding can get authorizations or claims denied. Never bill medical treatments under autism, as there are no recognized medical treatments for autism. Our children have co-occurring medical conditions, like constipation, allergies, etc. that need to be treated. For example, if your child is constipated, code the needed tests and treatments for constipation, not autism; you are much more likely to be reimbursed. There is a great Yahoo Group to look for help too at https://groups.yahoo.com/neo/groups/autism_insurance_information/
Compare rates by looking up the lab’s physician rate, the rate your doctor’s office charges you, the lab’s rate if you bill insurance, and the cost if you prepay the lab. Labs are usually half the cost if you prepay them! Also, research your state’s laws governing insurance coverage, as well asERISA.
4. Use your state’s Medicaid or waiver programs as a secondary insurance.
Medicaid programs usually will not cover any autism specialists, tests, or treatments, but they will generally pick up co-pays for office visits, prescriptions, and lab tests. 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.
5. Ask your local insurance-covered pediatrician to rewrite the MAPS doctor prescriptions so that your insurance will cover them.
If you must use an out-of-network doctor or specialty lab, find out if your insurance covered physician is willing to rewrite the prescriptions so that your insurance will cover the tests 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.
6. 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.
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 you buy the larger bottles.
7. Never start more than one treatment, of any kind, within a 2-3 week period.
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. If you start a bunch of things at once, you’ll have to stop everything and start all over again if you need to identify the source of a problem.
Starting with a new doctor can be overwhelming enough; trying to deal with possibly twenty new supplements or treatments all at once doesn’t help! Stopping and restarting will cost you a lot of time and money. You don’t want to overburden your child either. Think smart, think long-term, and go slowly.
8. Cook your own special diet foods. Prepare food from scratch, like people used to cook before food came in boxes.
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 prepared. Cook in large batches and freeze anything left over 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 premade mixes too. I make my own mixes for muffins, cookies, breads, etc. every few months. They are quick and easy and tailored to my child’s tastes and allergies. See GFCFSF on a Budget.
9. Don’t keep wasting time and money on any doctor or treatment if you are not seeing results.
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, the doctor works for your child, and if your child is not improving on that treatment, pull it. If the doctor refuses, then it might be time to find another physician.
Not all providers are perfect in their bedside manner, treatment protocol, and/or experience. Read about managing professionals and the parent bill of rights.
10. Find creative ways to pay for your medical treatments – bake sales, bartering, grants, family gifts, etc. and write it all off on your taxes.
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 else fails, use your 401(k) or savings account. Don’t forget that most of this is tax deductible too so check with your tax advisor.