One day, in a fairly irrational moment, I sat down and figured out what the total cost of speech therapy would be without insurance. I guess as the mother of two children with apraxia, I have developed a dark sense of humor about all of this. Where did I get my numbers? Honestly, I just guessed based on some things that I had read. I projected 3 times a week, $60 per hour for 5 years. Turns out the reality was; for the first child 5 days a week (off and on, give and take) for 7 years and about midway the price went up, and for the second child…well, lets just say hes still at it and its been almost 8 years.

If you do the math, you will see that my husband and I were in a position that we could not accept being denied by the insurance company. My husband is self-employed and our monthly premiums were more than our mortgage. I would like to share with you what worked for our family. Keep in mind, every insurance company is different, every policy is different, every state has different laws. Please remember that what worked for us may not work for you.
Our first evaluation for our oldest child was in 1992. Over the last 10 years I have developed my own little set of rules. Some of my rules came about from working as a paralegal and hanging around lawyers too much. Some of them I learned the hard way. All of them have come in handy at some time.

Rule #1 Never, ever, take no for an answer

Insurance companies seem to be in the habit of saying no right from the start. They will blame it on the lack of medical necessity, the fact that services are habilitative and not rehabilitative or that apraxia is a developmental disorder and insurance companies do not cover delays that are developmental. When an insurance company turns you down, you must follow all their rules for filing an appeal in order to protect your rights. Missing even one deadline can terminate your rights. When you file your appeal, send copies of all relevant documentation. Besides the speech therapists progress reports, letters from pediatricians etc, I always included letters from, the kids teachers, or anyone that dealt with my child on a regular basis, who would be able to note progress. Some insurance companies require proof of progress, so your speech therapist should be documenting every sessions progress. You need to periodically update your files to include all progress reports.

Keep a copy of everything you send. It will be easier to resend the packet when they say they never got it if you have everything together. I always sent my packets registered mail. It didnt stop the insurance company from saying that either the entire packet was lost or pieces were missing, but I could always prove I made the deadline.

I never assumed that the insurance company was organized enough to keep files from one denial to the next. Every time I had a problem, I sent my whole packet over again, from birth records forward. Anytime you send something to the insurance company, follow up with lots of phone calls. Make sure they have your information.

Rule #2 Keep perfect notes

When your child is diagnosed with Apraxia, stop at the office supply store on the way home from the doctor’s office. I’m just kidding, but getting yourself organized is essential to healing with you insurance company. I had a notebook that I used to keep just for when I talked to the insurance company. In my little notebook, I kept track of every call. I listed the date, the time, and who I was talking to, (Most of the time you can only get a first name. One friendly agent once told that they only give first names because they think people will call the agents at home and harass them. Uhm…), what the subject was and notes as the conversation proceeded. It got to the point that trying to deal with two children and their various insurance issues, I had to get two notebooks.

Keeping good notes is essential to getting and keeping coverage. One time, it was the day before Thanksgiving and I had the flu. I had been going round and round with this agent for days and she finally said that we were going to receive the coverage that we had asked for. I hung up the phone very please with myself. However, In my joy I had forgotten to get an approval number and when the insurance company refused to pay, I had no way of proving that we had been granted coverage.

The other thing youll need to get is a really big binder. There will be a lot of paper work as time goes by; evaluations, progress reports, letters sent and received, etc. Your claims will appear much more valid if you can recall facts and reports quickly.

Rule #3 Don’t be afraid to go up the chain of command

Try to remember that the folks who answer the phone at the insurance company are not the ones who denied your claim. They basically have a script to follow and have no other answers for you. However, no one has the right to speak to you in an unacceptable manner. I have had this happen when the clerk does not appreciate my persistence. Immediately ask for a supervisor and don’t be intimidated. Insurance companies are not therapists, nor are they doctors. They are not qualified to assess a child with a diagnosis of apraxia. Make sure that any paperwork sent by your therapist or doctor states that the treatment of apraxia is “medically necessary” and never, EVER use the term “developmental apraxia”. You will be denied immediately because to an insurance company “developmental” means its just a childhood issue that the child will eventually outgrow.

You are the link between speech therapy and the insurance company. Keeping a calm demeanor and good notes will go along way to furthering your cause.

Rule #4 Try to communicate with the same agent

This is next to impossible, but try to communicate with the same agent every time you call. Even if you have to leave a message and have that agent call you back, its worth it to establish a relationship with someone. Insurance agents are basically paid to say no to people like you and me. If you can become a person to them, it will be harder to deny your claim. In my case, every time the agent caught on to what I was trying to do, they wouldnt talk to me anymore, but it worked till they caught on.

Rule #5 Read and Understand your insurance contract

There are always loopholes in any contract. Find them and use them…your insurance company will if they can. Insurance contracts are even purposely ambiguous in places. This can benefit you as well as the insurance company.

Heres one little, legal scam that still amuses me. The insurance company says they will pay 80% of the allowable expense for speech therapy. You become very excited and proud of yourself for making your insurance company pay what you think they are obligated to pay. If your speech therapist charges $100 per hour, you figure youll pay $20 and the insurance company will pay $80. Great! Dont get too excited too fast…you have to find out what the allowable expense is, exactly. If your insurance company has an allowable expense of $50 per hour for speech therapy and your therapist charges $100, the insurance company will only pay 80% of $50. So you have to pay $20% of $50 and the remaining $50. What you really end up paying is $60 and the insurance company pays $40. Imagine my surprise when I did the math on that one. However, our therapist was a wonderful person and accepted the allowable expense, even though she was under so obligation to do so.

One of the most often used reasons for denial is lack of medical necessity. What you need to know is how your contract defines medically necessary. Not all contracts will define this term in the same manner. Once you have a definition, find out what they need to prove medical necessity. One of my children had repertory issues and antibiotics at birth. There were times when that was the deciding factor in coverage and not the diagnosis of apraxia. Make sure that your therapist always uses the term medically necessary when referring to your child.
Although you may see the term developmental apraxia in books you read on the subject, it is worth mentioning again, never use the term developmental when you are dealing with your insurance coverage. The term developmental means something entirely different to an insurance agent than it does to someone familiar with children diagnosed with childhood apraxia of speech. It is worth repeating..you could be denied immediately because to an insurance company developmental means its just a childhood issue that the child will eventually outgrow. Researchers and clinicians sometimes use the term developmental to differentiate childhood apraxia of speech from adult onset apraxia usually associated with people who have had strokes or acquired apraxia usually the result of brain trauma.

Rule #6 Read and Understand State and Federal insurance laws

Understand the meaning of insurance fraud. When an insurance company makes statements to you in your policy or pursuant to the purchase of a policy, and then does not legally abide by such statements in the review and payment of claims made by you pursuant to the policy, you have a good argument that the insurance company has defrauded you of the insurance premiums that you have paid, or have been paid on your account, per your policy. Do not hesitate to throw around the term insurance fraud when talking to an insurance company, although only do so if you have specific facts to back up your statements and only upon a last resort. As always, it is helpful to have an attorneys attention to such matters if you can afford one.

Rule #7 Don’t be afraid to call your State Insurance Investigator

I started in the blue pages of the phone book and kept making calls till I found someone who could help me. The underlying issue here is perseverance…yours!

Keeping things straight when you have two children in therapy can be challenging, even for the insurance company. The insurance company at one point decided that it was no longer medically necessary for my daughter to receive speech therapy. I went round and round with them, until I couldnt do it any more. My husband began to prepare a lawsuit and filed a writ (the beginning of a lawsuit) notifying the insurance company what was coming. At the same time, they began to deny coverage for my son. When I called to find out why, the clerk wondered how I could expect the insurance company to pay for one child when we where suing them on behalf of another child. Im not a lawyer, but that didnt sound right even to me! It was a little after 5:00 PM when I called the State Insurance Investigator. He picked up the phone himself and 48 hours later all my problems were solved. The insurance company had ventured just this side of fraud. They may not respect me, but they seem to be a little afraid of the State Insurance Investigator. It s worth the call.

Rule #8 Perfect your paper trail

I cant say enough as to how important it is to create a good paper trail. Check out Peter Wrights website at www.wrightslaw.com and the article entitled Parent Advocacy: Documents, Records and Paper Trails
https://www.wrightslaw.com/advoc/articles/advo.create.trails.htm .
The article refers mostly to dealing with school districts but most of this valuable information can be applied to insurance companies.

Keep track of every phone call that you make; who, date, time, what happened and every meeting that you might have. Get sympathetic letters from everyone involved with your child, the speech therapists, your doctor, independent evaluators, day care providers, pre-school teachers. Make sure professionals use the term childhood apraxia of speech and talk about the progress that is being made by your child. Insurance companies like to know that your child is making progress. I also got a copy of my childrens birth records and started the paperwork there. Remember to always send the insurance company copies and keep the original for your files. Some records can be hard to find after a while or even get lost in someone s file cabinet.

Rule #9 Have a good attorney

This is probably the last option any of us want to be faced with, but the reality is it may be the only recourse left at some point. If you have been reasonable and have reasonable expectations, if you have followed all the rules for appeal and are still being denied insurance coverage, hiring an attorney may be the last option available to you. Sometimes, a simple letter from an attorney may be enough to get the insurance company to comply with what is stated in the contract. Sometimes, you may have to take it a step further. Having a good paper trail will put a smile on your attorneys face and make the job easier.

An attorney might also be able to investigate whether an insurance company is complying with the Americans with Disability Act (ADA). A federal appeals court has found that ” if a federal statute like the ADA is violated, the Employee Retirement Income Security Act (ERISA) provisions allowing ERISA-covered health plans great latitude in excluding coverage for various treatments are preempted.” (Federal Eighth Circuit Court of Appeals, Henderson v Bodine Aluminum (CA8 Mo. 1995). Your attorney upon a review of your insurance policy may be able to determine that your insurance company has similar exposure under the ADA.
You can always call your local Bar Association and ask for a lawyer who is knowledgeable regarding special needs matters.

Rule #10 Always remember whom you are fighting this battle for!

(Adapted with permission from the Children’s Hospital of Cincinnati)

If your child has been referred or you are pursuing a speech-language evaluation or treatment, the following may be helpful in understanding the process of accessing your health care benefit program:

To request authorization for coverage:

• Call your child’s doctor: Contact the doctor who is referring your child for an evaluation. Request that a copy of the referral be submitted to your insurance company and sent to the evaluating facility or office. If your insurance company does not receive a copy of the referral before your child is seen for the evaluation, the insurance company may refuse to pay for any services and you could be responsible for payment.
• Call your insurance company: Contact your insurance company to ask if prior authorization or precertification is needed. If this is required, please ask your insurance company to fax the authorization to the evaluators office well before your appointment.
• Assistance obtaining authorization Ask if the facility evaluating your child has an insurance specialist whom can assist you in obtaining the necessary insurance authorization for the evaluation and/or speech therapy. Obtaining authorization for speech therapy can be a particularly lengthy process so you should contact your insurance company as soon as possible following the evaluation. Unfortunately some insurance plans do not cover speech or language services. Check your policy.

If your policy provides limited or no coverage for speech pathology services:

• Find out if your employer offers another plan that provides coverage for speech and language services. If so, switch to that plan during the next open enrollment period.
• Send a letter to your employer requesting better coverage in upcoming insurance plans. Employers have the greatest influence in obtaining better insurance coverage as they negotiate the contracts with the insurance companies. Your company will have no idea of the need for speech therapy coverage unless you inform them that you were denied for coverage. Group insurance coverage for speech and language evaluations and therapy is a relatively inexpensive rider for most companies to add to their existing policies.
• Inform your employer about any limitations in your plan, especially if your health insurance plan is self-insured by your employer. Your employer may be able to add speech services in future plans. Your state Department of Insurance may have limited jurisdiction over self-insured plans. With self-insured plans, the employer provides the money, decides what benefits to offer and what claims to pay. Theoretically, the insurance company just “follows orders.” The regulator over self-insured plans is the US Department of Labor, Pension and Welfare Benefits Administration at (202) 219-8776.

If coverage is denied:

If your policy lists speech pathology services as a covered benefit but you were still denied:

• Call your insurance company to determine the reason for denial. Ask for a copy of the your plan’s policy for speech therapy services and an explanation for the denial in writing. Ask the individual what is required from you to turn the denial into an acceptance (precisely what information does the insurance company need?). Write down who (you spoke with), when (time and date), and what (was said) for all telephone calls. Keep all fax confirmations.
• Write a letter to your insurance company asking them to review the claim again. A written inquiry will more likely result in a written response. The letter should be copied to your employer’s human resources officer. Include information about apraxia and its treatment. Feel free to quote the Apraxia-Kids website.
• Contact the Benefits Coordinator at your place of employment. Provide him or her with all documentation of your conversations with the insurance representative and copies of all letters sent and received. Ask your employer’s Benefits Coordinator to contact the insurance plan on your behalf.
• Appeal the decision through your insurance plan’s formal internal appeal process.See instructions below.
• Register a complaint through your state’s Department of Insurance.This is appropriate if:
  • You feel that your claim is being unfairly denied. This department logs each complaint and the volume of complaints regarding a particular subject or insurance company. The department will investigate the claim.
  • You are having difficulty receiving a copy of your policy. All insurance companies are required to file their contracts with this department.
  • You are not getting information in a timely manner. Health Insurance Law requires insurance companies to respond to consumers in a reasonable period of time. Generally, your insurance plan is required to send you written notice of authorization within six business days of your request if your child has not begun treatment yet. If your child is already receiving treatment, the insurance company is required to inform you that you will not be covered within 35 business days.

To appeal insurance denials:

• Call your insurance company to find out how to formally appeal insurance denials for speech therapy services. Ask for a copy of the your plan’s policy for speech therapy services and an explanation for the denial in writing. Write down who (you spoke with), when (time and date), and what (was said) for all telephone calls. Keep all fax confirmations. Also, refer to your Benefits Handbook from your insurance plan.
• Find out if your plan requires a letter explaining the medical necessity for services from your child’s speech pathologist and/or pediatrician. You may also be required to obtain medical records from your referring or primary care physician. Inform your speech-language pathologist that you want to appeal the denial and if you need a letter explaining the medical necessity for services.
• Contact your child’s pediatrician or referring physician and request any necessary medical documentation and their agreement that services are medically necessary.
• Inform the Benefits Coordinator at your place of employment that you are appealing an insurance denial. Ask him/her to contact the insurance plan on your behalf. Keep copies of all documentation you submit for the appeals process. The appeal process is lengthy and generally takes 6 – 8 weeks. Find out from your insurance plan how long it is expected to take. Insurance plans should have a written policy regarding when they need to respond to appeals.

Additional options

• If you have secondary health insurance, always pursue authorization for speech therapy with that plan as well.
• Ask the facility if they have any financial aid programs or are aware of sources where you can obtain secondary coverage via a state run program.
• Ask the facility if you can self-pay until the outcome of your appeal.

Making Sense of Your Health Insurance Plan – from the American Speech Language Hearing Association

Getting Health Plans to Pay for Pediatric Verbal Apraxia

Consumer Checklist for Getting Improved Speech-Language Service Coverage In Your Insurance Policy
For less than $1.00 per month you can add coverage to your health plan that will help you or your child speak or hear better, enjoy reading, and succeed socially. The American Speech-Language Hearing Association has developed a checklist that will assist you in approaching your employer to obtain or improve coverage.

Fighting A Health Insurance Claim Denial

How to Appeal Health Insurance Denial

How To Avoid A Health Insurance Denial – and What To Do If You Can’t

How to make claims under a self-insured health plan

Health Savings Accounts
HSAs enable you to pay for current health expenses and save for future qualified medical and retiree health expenses on a tax-free basis.

Medicaid Waivers
Some children with apraxia may qualify for Medicaid waivers.  Each state is different in this regard.  This link has listings for each state so you can explore what programs may be available.

First Hand Foundation
First Hand Foundation is a public 501(c)(3) organization that provides funding for individual children—both domestically and globally—who need assistance with clinical necessities (such as surgery, medication and therapy), medical equipment and travel related to care.

The Lindsay Foundation
Can sometimes cover some costs associated with speech therapy or equipment

Small Steps in Speech
Assists children by funding small grants for speech and language therapies.  We, Apraxia Kids, provide special funding to SSIS to help our families with children that  have apraxia.  Grants are awarded quarterly through the year.

The Orange Effect
Provides speech therapy grants for children who qualify

United Healthcare Foundation
Provides grants for medical costs that are not covered or not covered fully under a families commercial insurance plan, such as speech therapy. Income requirements also apply.

Scottish RiteCare Speech Clinics
Some Scottish Rite speech and language clinics do not charge or have a sliding fee for speech therapy based on a families ability to pay. They are not located in all communities.

Getting Insurance To Fund iPad for Your Child’s Communication Needs

Our organization works with parents to assist them in understanding how to file insurance appeals regarding speech therapy. One tip that is perhaps underutilized is having consumers request the assistance of their State Insurance Commission in resolving issues. Filing a complaint can actually be accomplished with some ease because most states have online submission for complaints. The National Association of Insurance Commissioners has a website which can assist consumers in various ways. One section allows consumers to click on their state and directs them to the complaint form for the Insurance Commission in their state. CLICK HERE and follow the links to your state.

How can involving State Insurance Commissions help? First of all, most state Insurance Commissions are consumer-friendly and exist to provide help to consumers from their state. Secondly, they can actually investigate, intercede and get involved. Finally, the state Insurance offices will keep data on the types of complaints that are filed, regarding what topics, and what issues. Having such data on the number of consumer calls regarding speech therapy reimbursement problems could be valuable information to assist in national advocacy efforts aimed at improving speech therapy benefits.

So, if you are experiencing a problem with securing insurance approval for speech therapy why not file a complaint? Speech-language pathologists and pediatricians can also help by suggesting the idea to parents experiencing difficulties and in some states the providers are permitted to file a complaint themselves.