Getting a Specialized Bed


Getting your Insurance Company to Approve a Specialized Bed for your Child

It took nearly two years to get our health insurance to approve a SleepSafeBed for our 7 year old daughter, who suffers from Bohring-Optiz Syndrome. We now have the SleepSafeBed and cannot imagine life without it. This special bed is perfect for a child with special needs. We sought after this bed because it included padded, full height safety rails that prevent risk of entrapment and falls. The railing system contains windows so the child does not feel confined. The bed is also electric which allows the mattress to be fully adjustable. It can be raised and lowered for easy caregiving. The head of the mattress can be raised to reduce risk of aspiration during night time feedings or improve breathing if the child is sick, and the foot of the mattress is adjustable for comfort. The bed can also be ordered with attachments for feeding pumps.

Before we received the bed our daughter slept in a baby’s crib because sleeping her in a regular bed, or on a mattress on the floor, would have been dangerous. Due to her cognitive delay, she is not able to sense circumstances of danger. Our daughter is able to roll and combat crawl with good coordination, however, she is not able to perceive that if she keeps rolling on a regular bed, she will roll off onto the hard floor. She also mouths and chews on everything. We have found her nearly chewing on electrical cords. At night she is hooked up to a feeding tube and catheter while sleeping. She also suffers from extreme insomnia, and lays awake restless in her bed, moving about, until the very early morning hours (3am, 4am, 5am) on some days. These are the reasons we sought after this special bed.

I thought my reasons for requesting a SleepSafeBed would qualify her instantly. However, this was not this case. As I mentioned above, the process took a grueling two years. Now that we have the bed, I find myself asking the following questions.

Was the request worth the fight?

Does my daughter really deserve a special bed like this?

Could I have done things differently for a quicker approval process?

Taking a step back and evaluating this experience, I can honestly answer “Absolutely” to each of these questions! This is the reason that I feel compelled to share this information with you.

Insurance representatives will try to provide you with the basic hospital bed, similar to the one in the picture. However, this bed is intended for bedbound adult patients who do not have significant cognitive delays. There are three main reasons why they do this...1) this basic bed is widely available and most durable medical supply companies have it in stock, 2) it is significantly cheaper than specialized beds, and 3) insurance representatives and your pediatrician are not familiar with other types of specialty “safe” beds.

Here are the steps to take when you are ready to seek a special bed:

  1. Research the bed the bed you are seeking. Contact the company who makes the bed directly. There are many bed models and they will help guide you to the one that will be best for your child. Find out which medical supply companies near you carry the bed. Often times they may be able to refer you to one who has a successful track record in getting the insurance to approve such beds.

  2. Contact a Medical Supply Company that carries the bed. The medical supply company may be able to assist you with the request for a specialized bed. Even though we were referred to a company that was not within our “insurance network,” the company was able to negotiate a one-time outside of network agreement and was able to obtain the bed for us.

  3. Educate your pediatrician, nurse care manager, and physical and occupational therapist(s) about the bed you are seeking. Explain the reasons why the “basic bed” is not appropriate for safety reasons. The basic bed will put your child at high risk for entrapment and injury. Although the rails on the basic bed can be padded (and the insurance company will tell you this), the medical supply company will tell you that the padding does not prevent entrapment. If you try to purchase padding online, you will likely find the same warning in the fine print.

    There are many articles that have been published that indicate such bed is not safe. Here is a New York Times Article titled “Safe in Bed?” by Paula Span, dated March 10, 2010. The United States Federal Drug Administration (FDA) also issued a publication titled “Hospital Bed System Dimensional and Assessment Guidance to reduce Entrapment” on March 10, 2016. Share these articles with your medical providers and therapist(s). It is important to explain that the basic bed is for the average disabled and/or chronically ill person, and not for the child who has a super rare syndrome.

  4. Ask for a Letter of Necessity from your child’s therapist(s). Make sure the therapist(s) documents the specific medical conditions of your child and their needs. The letter should also specify that the basic “full electric hospital bed with full size rails and any type of padding wrapped on them” is not appropriate a safe solution for your child. I recommend having the therapist letters include the make and model of the bed that you are seeking. Make extra copies of the therapist(s) letters for your records.

  5. Bring the Therapist’s letters to your child’s pediatrician and have them write a prescription. Make sure the physician reviews the therapist letters of medical necessity and agrees to the recommendations. A simple hand written statement on the last page of the therapist report is sufficient. The physician’s notes for the bed order should also be very specific and include the make and model of the bed you are seeking. Every insurance is different, so be sure to follow-up if you do not receive a notice regarding an authorization determination.

  6. If you receive a notice of denial, do not give up! Before you begin writing a letter of appeal it is important to find out why the bed was denied. I recommend following up with both the medical equipment supply company and insurance company for guidance. Once you know the reason, your next step will be to appeal the decision in writing.

    Your letter of appeal will need to be to the point and focus on why the bed is medically necessary. I recommend sharing about your child’s syndrome and explaining why the basic hospital bed is not appropriate. Include copies of the therapist letters, pictures of your child in their current bed, and include the articles that discuss how such basic beds are not safe. Have someone proof read your letter for grammar and spelling. I also recommend sending the letter of appeal to your State Department of Insurance, who is in charge of making sure insurance companies are following specific rules for such determinations. They are equipped with a legal department to serve you.

  7. If you get another denial, don’t give up. Keep appealing their decision. At this point, they think you are worn out (and you may very well be worn out), but do not give up!

This is the time to send your story and reason for the special request to the President/CEO of the insurance company. You will need to explain that your child’s rare syndrome deserves special attention, as your child’s needs are special. Most insurance companies consider the average illness when they write their policies. This is why you need to remind them that your child is not typical. Include copies of your previous letters. Include medical information on the syndrome, such as those published in professional medical journals. I recommend sending your letter via e-mail, regular mail, and even submitting it through the insurance company’s Facebook page. Most large insurance company’s Facebook pages are closely monitored. I took this approach, and received contact via Facebook immediately. I received a phone call from the insurance’s executive team the next business day. The bed was approved a week later.

- Sheri Bermejo

Please remember that every insurance company has different policies, which makes each request a bit unique. Hopefully you do not have to be involved in an appeal process. However, should you find yourself in that process, following the steps outlined above is my recommended approach for approval.