Uploaded:  12/8/2008

Author:  SA
Special Needs Beds:  
Getting Insurance or Medicaid to Pay

One of the most helpful adaptive items for many families is a special needs bed.  For children with reflux or respiratory problems, it can help enormously with positioning and keeping children healthy.  Other children with autism and similar conditions can sleep safely without escaping from their beds in the middle of the night.  And caregivers who need to do medical procedures or have larger children often use high-low style beds to easily lift their child up to a proper height for procedures and transfers.   

Unfortunately, it can be difficult to convince your insurer that a special needs bed is more than just an "item of convenience."  We struggled with our insurer for almost a year before we were able to convince them that a bed was a necessary item.  The remainder of this article will focus on the strategies we used to win this appeal.  

Step 1:  Identify your child's needs

Before even looking at beds, it is best to think about what your child needs in a bed.  There are many different models on the market, and you ultimately need to choose the bed that is most suitable for your child.  Insurance is unlikely to pay for a bed with all the bells and whistles if all your child needs is an enclosed space.

Here are some of the things you may want to consider:
  • Does your child have reflux or respiratory issues?  Consider a bed with a head that can be raised.
  • Does your child have positioning issues?  Consider a bed with both a head and foot that can be raised.
  • Is your child unable to move well on his own or free a body part that becomes stuck?  Consider a bed that is designed to prevent entrapment.
  • Do you need to lift your child in and out of bed?  Consider a bed that can be raised up and down.
  • Does your child require frequent medical procedures?  Consider a bed that can be raised up and down.
  • Does your child have seizures?  Consider a bed that has full sides with soft bumpers.
  • Is your child at risk for falling out of bed?  Consider a bed with full side rails.
  • Will your child climb out of a regular bed while attached to medical equipment?  Consider a bed with double-height sides or an enclosed canopy.
  • Will your child leave his bed and be a danger to himself?  Consider a bed with double-height sides or an enclosed canopy.
  • Does your child need an IV pole?  Consider a bed with a built-in IV pole.
  • Is your child at risk for pressure sores?  Consider a bed with a pressure-reducing or memory foam mattress.
One of the bed manufacturers has designed a questionnaire to help you determine your child's needs.  You may view it at http://www.sleepsafebed.com/Insurance/PatientHistoryForm.htm.

Step 2:  Find the right bed

There are several new beds on the market that meet the needs of a variety of children.  Some of these pediatric beds include:

SleepSafe:  Gorgeous wood beds available in wide variety of styles, including normal height, medium, and high with double-height rails.  See through full rails on all beds.  Fixed or articulating mattress (raised head and foot).  Pressure-reducing memory foam mattresses.  Entrapment-reduction design.  Available with a high-low feature that allows the entire bed to be raised or lowered.  Also available with IV pole, padded rails, or extra windows.

KayserBetten:  These beds are new to the United States.  Unique, colorful design with a combination of crib-style rails and windows.  Various heights available, including one that allows angling of the entire bed.  Multiple articulating frames available.  Pressure-reducing mattress available.  Many accessories, including canopy, storage items, padding, and a play bar, are available.

Easy Care Safety Bed:  Wood beds for children who need a fully enclosed bed.  Two models, one regular height and one high with double-height rails.  Design reduces entrapment.  Regular twin-size mattress and box-spring.

Hard Manufacturing Beds:  Crib-style hospital beds.  Available in a variety of colors and styles, including princess and race-car.  Full crib-style rails with padding available.  Full enclosure and IV pole attachment available.   Articulating frames available, either electric or crank.

Pedicraft Canopy Bed:  Canopy-style bed that is fully enclosed.  Cute fabrics.  Padded bed rails.  Available with a head elevation manual crank.  Height adjustable (manual crank) model available.  

Beds by George:  Gorgeous, beautifully crafted beds that are built to order.  Normal height and high with double-height sides available.  Full side, split side, and high side rails available with a choice of several designs.  Fully articulating (electric), manual crank, or fixed height available.  Many different styles, stains, and finishing touches are available.  Design prevents entrapment. 

It is also possible to use standard adult hospital beds for many children, though they may be unsuitable for some children.  There are many different styles and types of these available.

Step 3:  Write your letter of medical necessity

If you've read the previous article on writing appeal letters, you know I recommend writing your own letters of medical necessity.  I would highly suggest following the guidelines in that article.

First, include all of your child's diagnoses in the first paragraph, emphasizing those that are relevant to a special needs bed.   Then write a short paragraph about why your child's current bed does not work.  For example, you may want to say she has outgrown her crib, she falls out of bed, or she has terrible problems with aspiration on a flat mattress.

Next, you need to prove that all the features you are requesting are medically necessary.  Do not at this point mention a specific model.  Simply list out the features you need and explain each one.  Focus on the medical and not the psychological.  Here are some examples from my daughter's letter:

Raised head of the bed:  Karuna needs to sleep with the head of her bed raised 30 degrees to prevent reflux, aspiration, and assist with breathing during overnight feedings.  Elevation of the head of the bed is also required to address her respiratory issues, including preventing stridor from laryngomalacia that is aggravated by her reflux.  
Full rails:  Because her seizures cause repetitive head turns and twitching throughout her body, Karuna needs a bed with full rails to protect her from falling off the bed during a seizure.

Design that prevents entrapment:  Karuna needs a bed that is safe from entrapment because she is limited in her ability to volitionally remove a trapped body part.

Elevated foot of the bed:  Because Karuna is hypertonic in her extremities, she needs a bed that will allow her legs to be elevated to relieve circulation problems.

Pressure-reducing mattress:  Finally, Karuna has limited ability to move her trunk and needs a mattress that will prevent pressure sores.  

Bed instead of crib:  Since her needs for an adjustable bed will be ongoing throughout her life, it will be more economical to purchase an adjustable bed at this time instead of a hospital crib that will only last her two or three years.

Your reasons are likely to be different, but make sure you provide a medical explanation for every single feature of the bed that your child requires.

It can also be very helpful to explain how the bed will keep your child out of the hospital by preventing medical problems like aspiration pneumonia, infected pressure sores, broken limbs from falls, and so forth.

Once you list out the reasons, write a short paragraph stating that whatever bed you want is the only bed available on the market that meets all of your child's medical needs.  It is often helpful to cite the names of other cheaper beds and specify why they will not work.  For example, I explained that most brands of beds lack full solid side rails, which were the only safe option for my daughter.  

Step 4:  Submit your letter of medical necessity and supporting paperwork to your insurance or your Durable Medical Equipment provider

Depending on your insurance and your provider, this step may vary somewhat.  Some families may submit all the necessary paperwork directly to their insurer.  Others will need to submit it through an equipment provider.  You may also need to submit a prescription from your doctor and other information.

It is important to make sure your equipment provider is able to supply the bed you want.  If that is not possible, contact the company that makes the bed for advice on how to proceed.  They may recommend a different vendor.  In addition, many of these companies provide help with insurance and funding.  Make sure to contact them for specific advice about their process.  Many have sample letters specific to their beds available on their websites.

Step 5:  Expect a denial and be prepared to appeal

Our first request was denied because the bed was considered an "item of convenience."  This is very, very common.  Don't give up.  Instead, pull out the big guns.

Write another letter of appeal that can be from you or from your child's doctor.  Include a wide variety of supporting items, such as photographs of your child in her current bed.  We also included medical records documenting reflux, aspiration, skin breakdown, and other issues.

Ultimately, what we ended up doing was renting a regular inexpensive hospital bed.  When my daughter was discharged after a hospitalization, we had her discharging physician order the rental bed as a condition of discharge.  Since the insurance company obviously wants to get your child out of the hospital, they are much more likely to agree to this.  

Once we received the rental bed, we documented why this bed was unsuitable for her, taking pictures of her with her arm and head trapped in the rails.  I submitted several pictures like the ones below and her bed was approved immediately.  They actually expedited the approval!  Pictures are often the best way to win an appeal.

Step 6:  When you are still denied

If multiple appeals fail, you may need to reconsider your options.  Sometimes you may be able to win approval for a less expensive bed with fewer features.  It is also possible to seek outside funding from foundations, local groups, and charities.  

Step 7:  Enjoy your bed!

The majority of families who have gone through this process have been able to get the bed of their choice.  Expect it to take some time and some work.  But hopefully your child will soon be enjoying his new bed!