Last spring we learned that our son, Riley was diagnosed with severe Childhood Apraxia of Speech (CAS). Our excellent Early Intervention speech language pathologist (SLP) provided the first diagnosis and helped structure our Individualized Education Program (IEP). She strongly suggested that we supplement Riley’s weekly school-based speech services with several private speech sessions. I learned quickly that obtaining those private speech therapy sessions through our insurance plan would prove to be challenging.

Our plan limited rehabilitative speech services to just 60 visits. Given Riley’s need for frequent, intensive, long-term speech therapy, we would quickly expend our benefit limit and face significant out-of-pocket expense. Our plan also provides habilitative therapies for children under age 19 with congenital or genetic conditions, without day or visit limits, when services are to enhance a child’s ability to function. To me, it made perfect sense to pursue this benefit for Riley. I knew it would likely require significant effort to get him approved for this benefit, but I figured my professional background as a health services researcher would provide me with a strategic advantage. In the end, we prevailed and Riley has been granted the unlimited habilitative speech services. Throughout the process, I found that I frequently relied on my professional knowledge and skills. In hopes of helping others through this process, I have assembled a list of some of the most important factors to keep in mind and steps to take when trying to obtain speech services through your insurance company.

Take stock of your situation. Understand that you are a parent who is about to challenge what is likely a large insurance company. In a managed care environment, insurers benefit by limiting the services they provide to enrollees. Even if your insurance company does provide something similar to Riley’s habilitative option, expect that you will have to work hard to get those services approved. Think about it – why would an insurer just hand-out unlimited habilitative therapy services to children until they reach age 19? For children with conditions such as CAS that require frequent, long term, and intensive therapy, this could represent a significant cost for an insurer. Understand before you begin this fight that you will likely face at least one denial, and perhaps several rounds of appeals. When the denials come, and they will come, don’t get discouraged. You will need to muster the energy to persevere even when you feel like giving up.

Don’t panic, you’re already ahead of the game. The fact that you are reading this indicates that you already have access to two of the most important tools you’ll need in your fight: the internet and the apraxia-kids.org website. The few hours you devote to scanning the apraxia-kids.org website will be among the most valuable you spend in this effort. The website will provide you with an amazing depth and breadth of background information and descriptions of CAS; citations and links to research articles, textbooks, conferences and symposiums; and information on the nation’s leading researchers and clinicians working on CAS. There is also an incredibly rich archive of articles from experts that are perfect for using to support your arguments. The apraxia list serve will give you access to literally thousands of parents who can share their ideas, experiences, and tactics. When you get stuck, send a quick e-mail and you will be shocked at how many people write you back with suggestions and supportive comments. You will also find other invaluable information via other internet sources like the National Institutes of Health’s National Institute on Deafness and Communication Disorders, and the American Speech and Hearing Association (ASHA).

Understand your benefits. It is necessary to thoroughly review your insurance benefits and understand the true scope of benefits. For example, our benefit book states that our plan covers up to 60 rehabilitative visits. Initially I assumed that this meant that, if we didn’t get approved for the habilitative (unlimited) option, we could at least count on 60 rehabilitative speech visits each plan year. Imagine my dismay when I learned that in actuality, our 60 visit limit was a lifetime limit. In our plan, services must specifically state that they are limited to a plan/contract year, otherwise, the limit applies to the enrollee’s lifetime.

Learn about any relevant state or federal laws that apply to your situation. In Maryland House Bill 692 requires insurers to provide habilitative therapies without limits to children under age 19 with a congenital or genetic birth defect. A few easy searches on the Maryland legislature’s websites yielded me all the information I needed to understand the law and how powerful it could be for us.

It is also essential that you understand whether or not your health plan is governed by the federal Employee Retirement Income Security Act (ERISA) of 1974. If your employer provides your health insurance through a policy of insurance or a health maintenance organization, ERISA is likely to apply. If so, ERISA will pre-empt state laws that govern whether or not there was a right to benefits; state laws that involve bad faith and breaches of insurance contract do not apply to ERISA plans. Instead, federal regulations will apply and your remedy will likely reside in the federal courts. Some exceptions do exist, however; if you work for either a church or religion, or a governmental entity or agency your right to benefits will likely not be governed by ERISA. In our case we are covered by a federal employee benefits plan so we were not covered by ERISA.

It is important to understand that ERISA’s remedies are substantially different than those found under most state insurance laws. For example, under ERISA, you do not have a right to a jury trial; instead your case is decided by a judge. Generally you will not be permitted to call witnesses, and the judge will rely on the paper record that developed over the course of your initial claim, denials and appeals. In addition, under ERISA, there is no right to punitive or consequential damages; however, if you win you can recover attorney’s fees.

Give them everything including the kitchen sink. Don’t skimp on any documentation to your insurance company, ever. Remember that if your health plan is governed by ERISA, the only documentation the judge will examine is the paper record that developed between you and your health plan. Therefore you must include everything that can possibly be relevant to your argument. That means that whenever possible, you should include copies of the full text of website and journal articles, textbook chapters, symposium findings, etc. to back up all your arguments and counter arguments. For example, our insurance company attempted to argue that that CAS is not a “significant structural or functional abnormality of the body that was present at birth.” I scoured the universe to find documentation that CAS is in fact a congenital condition (i.e., present at birth), and that it is a functional abnormality. When they later claimed that CAS is a learning disability and should be treated solely by the school-system, I used the Individuals with Disabilities Education Act (IDEA) to counter their argument. In my opinion, it was not enough to merely state this in an appeal letter to the insurer. Instead, it was essential to provide credible supporting documentation to support my argument.

In addition, it is absolutely essential to never ignore any point made by your insurance company. You must address every point they make, and provide documentation to counter them. You should also point out when the plan has failed to address one of your previous arguments/counter arguments. If they have abandoned a particular argument, you should state in a subsequent letter that you presume that you have successfully overcame their denials.

Never miss a deadline. Pay careful attention to the deadlines for each submission and every appeal response. If you do miss a deadline, you could lose all standing to request services, and your case will be closed.

Anticipate possible requests for documentation. To make a benefit determination, our health plan requested Riley’s birth, pediatric and speech records. Along with the requested records, I also provided other documentation including letters of medical necessity from Riley’s pediatrician and two SLPs; background information on CAS, including recent genetic research; and a literature review explaining the need for frequent, intensive, one-on-one speech therapy. This large volume helped establish that our request was serious, well thought-out and comprehensive.

Draft letters for your pediatrician and SLP(s). Although Riley’s pediatrician and SLPs strongly supported our quest for habilitative services, they are busy people and did not have time to write thorough medical necessity letters. Additionally, they were not as well versed in the condition as I was becoming. To help expedite things, I drafted comprehensive medical necessity letters, complete with citations and footnotes for both the pediatrician and SLP. Of course, when I presented these drafts, I made it clear that they could make any changes they deemed necessary. They reviewed the letters, along with the accompanying supporting documentation, and signed-off on the letters as is. We followed the same process for appeal letters as well. They appreciated the extra effort I took to help make their job easier.

Seek expert opinions. Don’t be afraid to contact leading experts in CAS treatment and/or research to ask for their support in your request for services/appeals. In our case, I was having difficulty finding any documentation that specifically described CAS as a “significant functional abnormality of the body present at birth”. After significant time searching to no avail, I e-mailed a handful of nationally recognized experts requesting their assistance. Of course, since they had never met Riley they could not offer any opinion on his diagnosis, treatment plan, or prognosis. However, they could address whether, in their expert, professional opinion, CAS met our health plan’s criteria for habilitative services. I was fortunate to identify two clinical researchers who were willing to write such a letter, and one researcher who was willing to share a new textbook chapter that had not yet been published. I offered to pay each of these experts an honorarium in recognition of their professional expertise and time; however, none of them accepted.

Insist that that right professionals review your case. Our insurer employed an external consultant physician board certified in pediatrics to review our appeal. Physicians do not provide treatment or assessment/evaluation of communication disorders, and thus are not qualified to make determinations about CAS. We provided documentation from ASHA that showed it is within the scope of practice of SLPs to diagnose and treat verbal apraxia. We therefore insisted that a medical SLP consultant with either a clinical doctorate, or a PhD-level clinician with experience working in a medical facility be employed to review this case. If such a professional could not be located, we agreed to accept the review of a developmental pediatrician only as a second choice.

Call a spade a spade. If the insurance company’s denial is vague, erroneous, arbitrary, and does not comply with what is clearly stated in your benefit plan, say so. Don’t be afraid to use strong language in your appeal letters. In fact you should strive to make your arguments in the most clear and persuasive manner, and sometimes this requires bold language. However, remember to keep your arguments respectful and professional.

Go over their heads. When you find that your appeals are going nowhere, seek assistance wherever you can. This can include your state’s insurance commissioner’s office or in the case of federal employees, the federal Office of Personnel Management. Make sure you carbon copy your insurance company on each of these letters to let them know that you are not taking their denials laying down.

Enlist your public servants. At the same time you write to a state or federal agency for relief, send a letter and supporting documentation to your state legislator and/or US congressman and/or senators asking for their assistance with your case. The decision of whom to write depends on which level of government has jurisdiction over your case. Since we are covered under a federal employee benefit plan, we were required to go directly to our US congressman and senators. This is an essential move. If you have any second thoughts about this step, remember: they are in office to represent you and your concerns. Both my husband and I have experience working in federal agencies and know what happens when a congressman or senator writes on behalf of a constituent’s complaint. Immediately your case takes on a high profile, it is put on the radar of the unit chief, the division head, and perhaps even the director. These managers become very interested in your case, how it is being handled by the benefit/plan specialist, and pay close attention to the outcome. When your case is closed, they are required to write a letter back to the legislator explaining how your case was determined. Make sure you carbon copy your insurance company on these letters as well, they should know that government officials are taking an interest in your case.

Attach a face to the name. You know how adorable your child is, the insurance company doesn’t. They see his or her name on a piece of paper, and know that he has a condition called CAS. Most likely few claims specialists know what apraxia is, much less how it sounds coming out of a child’s mouth. Making a video tape that includes speech therapy sessions and home video is a good way to bridge this gap. It also humanizes your child and his condition, and helps them to understand what it means to have speech that is “greater than 90 percent unintelligible” as Riley had prior to his intensive therapy. It can help drive home the fact that this therapy is needed (as opposed to just being wanted) to enhance your child’s ability to function.

Send all correspondence certified return-receipt. Don’t take anything for granted with the mail, or on the receiving end. The insurance company can’t claim they didn’t receive your response, or say it was received past your deadline when you have a signed and dated receipt.

Keep meticulous records. You will amass a huge amount of material during this process. You will need to keep track of it all, and being meticulous helps.

Remember who and what you’re fighting for. It’s easy to get discouraged during this process, but don’t give up. You are the absolute best advocate for your child. Intensive, frequent, one-on-one speech therapy is the only proven treatment for CAS, and your child needs it.

[Ms. Nolan is a consultant working in health services research and policy. She is also a doctoral student in the Department of Public and Community Health, College of Health and Human Performance at the University of Maryland.]