Please Note: Complex Child does not supply diapers or pay for your child’s diapers. This article is intended to provide information for you on how to obtain diapers using your existing insurance or Medicaid coverage.
One of the largest daily expenses many families face is probably one you would not think of: diapers. Unlike the average typically developing child, children with medical complexity or other special needs often require diapers and other incontinence products for their entire lives.
Diapers may cost families $120 a month or more, and wipes, disposable underpads (chux), and other incontinence products may add substantially to the cost. Most—but not all—children with private insurance do not receive coverage for diapers. All children enrolled in Medicaid programs in every state are entitled to diaper coverage. Unfortunately, many states have made it difficult for children to receive this benefit even though they are clearly entitled to it.
Medicaid, EPSDT, and Diapers
All children in Medicaid programs are covered by a provision called EPSDT, which stands for Early and Periodic Screening, Diagnosis, and Treatment. This provision can basically be thought of as the package of services each state Medicaid plan is required to offer all children from birth through age 21. This program began in 1967, and was intended to ensure children received appropriate diagnosis and treatment of their condition as early as possible to prevent long term health consequences.
Under the guidelines of the Medicaid Act, EPSDT must provide appropriate medically necessary treatment once a doctor has diagnosed a child with a condition. Included within medically necessary treatment is “home health care” that is provided to ameliorate a child’s condition. This provision has largely been interpreted to mean that any medical supplies and equipment must be provided for a child to treat a diagnosed condition, and Title 42 CFR section 440.70, the US code dealing with public health, clarified that this means medical supplies, equipment, and appliances. A previous lawsuit also clarified that the term “medical supplies” includes incontinence products.1 Thus, if a child has a diagnosed condition of incontinence of bowel or bladder, EPSDT is required to cover the appropriate home health care treatment for this condition, which typically includes diapers or other incontinence products.
For years, many states had failed to provide diaper coverage through Medicaid. In 2009, a lawsuit was brought against the state of Florida on behalf of Sharret Smith, a teenager with cerebral palsy who was incontinent. The state Medicaid manual for Florida specifically excluded coverage of diapers, and this lawsuit alleged that excluding diapers violated EPSDT for children under 21. On January 27, 2010, the case was decided by a United States District Court judge in favor of the child, and Florida has been mandated to provide diapers to children with diagnosed incontinence.
While this lawsuit only directly affects Florida, most states have taken notice of the ruling and are also providing diapers.
Who Can Get Diapers and How to Get Them
EPSDT states that payment will only be made for treatment of a diagnosed medical condition, so diapers can only be prescribed for children who remain incontinent beyond the typical age of potty training. Most states begin covering diapers at age three or four. A few states do not begin coverage until age five, and several will cover diapers before the age of three with a medical diagnosis.
The process for getting diapers typically requires several components:
- Obtain a detailed prescription or letter of medical necessity from your child’s doctor, which may include your child’s main diagnosis, a diagnosis of incontinence, an estimated duration of the condition, and the amount of supplies needed per month.
- Obtain prior approval for the items from Medicaid (in most states).
- Contact an approved home health vendor or pharmacy to provide the items.
Some states have streamlined the process by working with just one or two home health vendors. In these states, often all you must do is call the vendor and request diapers. The vendor will obtain the physician’s prescription and Medicaid approval.
States vary in what they will cover. Most will only cover generic brand or youth diapers. Some will cover pull-ups, but some will not. Most cover disposable underpads (chux), but only some cover wipes. Despite official guidelines in each state, it is often possible to get additional items, such as microwaveable bath cloths or heavy duty wipes, if a doctor writes a letter of medical necessity for the items, specifying how they ameliorate a specific condition.
When Your State Denies Coverage
Some states, including Georgia and a few others, have been reluctant to supply diapers. In some cases, this is only because local authorities are not aware of state policies and may give families incorrect information. In other states, private managed care organizations running Medicaid programs have their own regulations and may attempt to deny benefits that the state is required to cover. In either case, diapers ARE a covered service, and appealing to your state should resolve the issue.
To begin the process, simply have your physician submit a letter asking for approval of diapers to your state or local Medicaid office. In this letter, your physician should include the following statement, along with information about your child’s diagnosis, incontinence, and other standard information:
Children under the age of 21 must receive federally mandated EPSDT benefits, which include medically necessary treatment for a diagnosed condition such as incontinence. Medically necessary treatment includes home health care, specifically medical supplies, equipment, and supplies, as indicated by 42 CFR section 440.70.
If your state continues to deny diapers, you may want to contact your state’s Protection and Advocacy office, remind them about EPSDT and the aforementioned Florida lawsuit, and ask for their assistance in resolving your issue. An official list of these organizations can be found online at the US Department of Health and Human Services.
All states are also required to have a family to family health information center who may be able to assist you. A list of these organizations is available from the Family Voices website.
In some cases, families have difficulty obtaining information about what companies are approved vendors for diaper coverage in their state. In this instance, contact your child’s case manager (if applicable) or your state Medicaid office for more information. It may also be helpful to contact another local family or disability advocacy organization to obtain this information.
Private insurance plans are not required to offer comprehensive benefits, and most do not cover diapers or other incontinence supplies. Nonetheless, it is worthwhile to try to use a vendor who will attempt to bill your private insurance, because you may be surprised to find the supplies approved. One parent had the experience of her private insurance sending out a denial letter stating the policy did not cover incontinence supplies; however, when the insurance company was billed for the supplies under standard medical supply codes, the items were covered and paid for.
The Moral of the Story
Diapers are covered for every child with diagnosed incontinence who is past the potty training age, as long as the child has Medicaid. Private insurance plans vary and may or may not cover diapers. Hopefully this information can help families obtain diaper coverage and save a little bit of money each month!