Many MPS kids or other children with special needs never become potty trained. If they do, sometimes it is not for very long. So, diapers are a big deal to us parents. But who pays for your child’s diapers?
While most parents expect their child to be in diapers for 2, 3, or maybe even 4 years, no one is expecting the expense of diapers indefinitely. In addition, as your child grows, the diapers continue to get more expensive. Your sweet boy or girl can no longer squeeze into the Huggies size 7’s – the largest regular diaper out there that I know of. Sometimes you switch to the Goodnites that come in larger sizes but are pullup style, so thus, more difficult to put on a hyper and writhing child as well as more expensive than regular diapers.
When you have to make the switch to “medical” diapers like Tena or Tranquility, the cost can rise exponentially. And as MPS parents know, the toileting habits of our kids are often not those of a typical child, so you may need many more diapers and/or diaper liners as well.
So how do you afford diapers? Parents are often told that they have to pay for diapers themselves, even though their child may continue to need diapers their whole life. This is simply NOT true if your child receives Medicaid in the United States, no matter what state you live in. Read more below….
If your child does not have Medicaid or a Medicaid waiver, then the answer is not as simple. But, there are several alternative sources for funding diapers that I will discuss below.
These are the potential sources for funding diapers that I am aware of in the United States, although some states and localities may have additional sources as well. The best way to know is to speak with your child’s case worker or social worker, other special needs parents in your area, and the local Easter Seals and United Cerebral Palsy offices in your area.
If your child under 21 receives Medicaid, a federal program called EPSDT covers medically necessary services including, according to the courts, diapers and incontinence supplies needed because of your child’s disability (even if your state’s Medicaid does not normally cover those services). It is unfortunate that many families are told that their state’s Medicaid does not cover diapers for their child or does not cover the amount or type that the child needs. For a good background on EPSDT, how it is connected with Medicaid, and how it helps your child, read this document from the Human Services Research Institute.
A reminder that even though you have the legal right to something doesn’t mean that the person on the other end of the phone understands the law or wants to be helpful. Several moms in Georgia found this out when trying to fight for diapers. The Children’s Disability Education Association discusses the issue and also directs you to Advocacy offices for every state that can be helpful in addressing access to health care issues for your child. Additional information on diapers being a covered service under EPSDT is also on their website.
Here is a presentation about EPSDT in Colorado – see slides 79-85 for information about diaper coverage.
You will likely need a prescription, a letter of medical necessity, and possibly other documentation. It may be helpful to call a DME company that deals with incontinence supplies in your area and see their process for getting it approved. They may even be able to help you with that process. We received our supplies through Edgepark Medical out of Ohio and they were always very helpful.
If your child has a Medicaid waiver, they usually have full Medicaid services and may also have additional services through the waiver. Sometimes the diapers are actually provided under a portion of the Medicaid waiver and that is an easier route than trying to make the EPSDT argument. If your child has the waiver, talk to his or her waiver case manager to find out if the waiver covers diapers and if so, how to get them. Don’t be afraid to make the argument for the number of diapers your child actually uses/needs even if they say, “well, it only covers 160 diapers per month.” Whether through the waiver or regular Medicaid, your child should get the amount of incontinence supplies he or she actually needs. Also, if there is a reason why your child needs one type of diaper over another (the fabric gives them a rash, they frequently “overpee” and may need booster liners, or something else), do not settle for an answer that does not give your child what they need simply because someone says that is all that Medicaid or the waiver provides in your state.
STATE HANDICAPPED / MATERNAL & CHILD HEALTH PROGRAMS
All states have some program that is funded by Maternal & Child Health grants issued by the U.S. government. A portion of those funds must be allocated for children with special health care needs (“CSHCN” for short) and many states use them to fund programs that pay for durable medical equipment, co-pays, and/or supplies like diapers. Some have financial qualification criteria and some do not, but often the criteria differ from Medicaid so just because you do or don’t qualify for Medicaid, this still could be another resource for your child! Here is a good summary of these programs and a contact for more information. I could not find a good state-by-state listing of programs, but here you can find a contact person for the CSHCN by clicking on your state then scrolling down to find the contact for the Title V Children with Special Health Care Needs program (you can also google CSHCN and the name of your state). In Tennessee, we have the program called Children’s Special Services, that does not actually cover diapers but has other services, but I never would have even connected with it had a friend not told me about it.
Not many private insurance plans cover diapers. It is always worth it to (1) talk to your case management contact if your child has one [and he or she SHOULD if they have an ongoing, complex medical condition], (2) call customer service for your plan otherwise, and/or (3) talk to the human resource manager at your employer that has the coverage; he or she may have had this question before and have some knowledge or suggestions.
If all else fails…
Do not forget to call your local Easter Seals office, your local United Cerebal Palsy office, and speak to your child’s case worker or social worker at the local hospital or otherwise to see what suggestions they have. Many medical diapers can also be purchased on eBay for cheaper than from medical supply houses.
If you have additional insight or methods to obtain coverage for or access to diapers, please comment!