Six-year-old Alexander was diagnosed with moderate autism spectrum disorder (ASD) several years ago. His parents have spent years attempting to potty train him, but he just isn’t completely there yet. In fact, his parents thought several times he was potty trained and then he regressed. Alexander’s parents are frustrated by the added stress of not reaching this milestone and the added cost of large-sized pull-ups when their budget is already really tight. What can they do to make life a little easier?
Maybe your child is like Alexander and needs a little extra time before he/she is potty trained. Children on the spectrum are often slower to reach milestones, making it necessary to wear for diapers, pull-ups or youth pants for an extended number of years.
Why Do Some ASD Children Take Longer to Potty Train?
There are myriad reasons children on the spectrum often remain in diapers, pull-ups and youth pants longer than their neurotypical peers. Sometimes it’s a developmental delay and the child is not able to recognize he/she has to go potty or maybe the child doesn’t have the adequate skills to maneuver clothing in time to use a toilet. Children with communication challenges are less likely to be able to tell someone else he/she has to go to the bathroom. Those children who take medication with sleepy side effects may also find it difficult to wake up in time to go to the bathroom. And children with severe autism often don’t have the cognitive and motor skills to use a toilet — making the task that much more difficult to master. It’s important to remember every child has different abilities and will develop at his/her own pace. Your child may need to use diapers or pull-ups for a little bit longer than others. And once potty-trained, sometimes some protection is still needed overnight. With the costs averaging hundreds of dollars per month, it’s important to find an excellent source for well-priced diapers and pull-ups and perhaps some financial assistance.
How do I Find Financial Assistance?
As you probably know by now, diapers and pull-ups are costly, especially when needed long-term. First, talk to your child’s doctor about your options as a great number of children on the spectrum qualify for some financial assistance for medically-needed supplies and equipment.
If your child is eligible and enrolled in publically-financed medical services such as Medicaid, he/she is likely covered by a provision called Early and Periodic Screening, Diagnosis, and Treatment (EPSDT). Every state plan is required to make certain services available to all children from birth through age 21 and this program ensures children not only receive a diagnosis, but appropriate treatment. This includes medically necessary supplies and equipment, so if a child is diagnosed with incontinence, this usually includes diapers for children beginning at age three with a prescription from a doctor. If your state denies your request for diapers for some reason, you can appeal the decision as they are required to comply as indicated by 42 CFR section 440.70 under Home Health Services. Remember, the rules governing states differ, with some states permitting coverage before three years old if there is a medical diagnosis while others make families wait until a child is a bit older. It’s also important to point out that states also vary in which diaper or pull-up brands they will cover with some restricting coverage to only certain brands. Unfortunately, not all states will pay for pull-ups. Request information from your particular state and talk to your child’s doctor and a Medicaid representative to ensure you can make the most of on your options. You may need to use the phrase, ‘disposable incontinent supplies’ when researching or applying for assistance.
Private insurance plans are not required to provide comprehensive benefits and many do not cover diapers or other incontinence supplies. Some insurance companies, however, will cover a portion or the full-price of diapers, pull-ups and youth pants for children with special needs because they are a necessity. It is worthwhile to find a vendor who will attempt to bill your private insurance, because you may be surprised to find the supplies approved. There have been incidences where a private insurance company has sent out a denial letter stating the policy did not cover incontinence supplies and then when the insurance company was billed for the supplies under standard medical supply codes, the bills were paid. It’s important to keep your receipts because you may need to pay for diapers and/or pull-ups upfront and then be reimbursed from your insurance company. Most companies require a letter from the doctor explaining the requirement as well as a prescription for disposable incontinent supplies. Always call your insurance company to check what they specifically require.
A Buying Guide to Finding Large Diapers, Pull-Ups and Youth Pants
It can be a challenge finding diapers, pull-ups and youth pants for older children as they aren’t typically stocked in your local grocery or big box store. Once your child graduates to “big sizes” (over size 6), you may need to use a medical supply store or an online medical supply retailer to special order diapers. In addition to using the words ‘large diapers’ in your search, try adding the word ‘incontinence.” Many companies don’t use the word ‘diaper’ once a certain size is reaches and they are commonly referred to as ‘pull-ups’ or ‘youth pants.’
Diapers, Youth Pants and Pull Ups Highly-Rated by Parents
It can be a challenge to find those ‘in-between’ sizes for children still in need of daytime and/or nighttime protection as they are often too big for many typical baby diapers but then still too small for adult-sized protection. It may be worth checking out the cost and quality of store/pharmacy-brand products. Here are several name-brand products parents of children on the spectrum have used with success. Some websites offer excellent discounts and even free shipping on bulk orders so be sure to do a little research. Some of the links below are amazon affiliate links so if you buy through these links Autism Parenting Magazine will receive a commission.
- Up to size 6 – 35+ lbs
- Cottony soft outer cover
- Soft stretchable waist and side panels
- Excellent leakage protection
- Hypoallergenic – extra soft inner liner with organic botanicals, vitamin E and aloe
- Up to size 6 – 35+ lbs
- Premium absorbency
- Totally free from chlorine processing
- Free of fragrance, inks and petroleum-based lotions
- Snug, flexible fit
- Up to size 7 – 41+ lbs
- 3-way fit adapts at the waist, legs, and bottom
- Up to 12 hours of overnight protection with some sizes
- 3 layers of absorbency versus only 2 in ordinary diapers
- Up to size L-XL – 58-85 lbs
- Quiet, cloth-like material
- Designed to be like underwear to let skin breathe
- Up to 3X – 48-50 lbs
- Ideal for boys ages 8 to 18 years old
- Super absorbent polymer SAP that locks in wetness is used and extends outward as well as into the sides of the brief
- Along with the combination of elastic leg gathers and leak guards, the Race Car Diaper provides the best protection one can find in a youth disposable brief market today
- Sizes Youth/Small Adult to Adult XL – Youth/Small Adult fits waist size 22″-36″ – 80-125 lbs
- Super absorbent polymer channel
- Helps prevent odors
- Breathability with air flow material to keep skin dry
- Discreet packaging
- Up to size 4-5 years – 36-46 lbs
- Embroidered oval handles sewn into our super soft wide waist band that allow for an easy grip
- 95% Cotton, 5% Spandex
- Up to size L/XL – 60-125 lbs.
- 40% more absorbent than training pants
- Zoned protection for boys and girls
- Super stretchy sides fit many body shapes and sizes
- Sizes Youth/Small Adult to Adult 2X Large – Youth/Small Adult fits waist size 20″-34″
- Discreet absorbent protection
- Locks in moisture fast for added leakage protection and odor control
- Silky-soft outer fabric is softer and more comfortable
- Ventilated waist panels allows air to pass through to reduce heat build-up and promote healthy skin
- Up to size XL – 85 to 125 pounds; absorbency: 15 oz.
- Ideal for youths who have outgrown toddler training pants or need heavier protection
- Feature a tear-away side seam on the waistband for quick and easy garment changes.
- Sizes Youth XS Youth fits waist size waist/hip size of 18″- 26″
- Highly absorbent
- High capacity for holding urine
- Guarantees skin dryness
- Neutralizes urine – inhibits bacterial growth
- Capacity is 18.5 oz of urine in the youth size
- Cloth like backing
- Latex free
- Up to size L – 45+ lbs
- Placement of snaps allows for customizable fit
- Best choice for ease of use with daycare and other care givers
- Durable fabric makes for easy wash and wear
- 1 year warranty
Medical Supply Retailers
You may find better prices on larger diapers, pull-ups and youth pants through a medical supply retailer. As previously stated, some insurance companies and Medicaid may require the diapers come from a specific retailer, so keep that in mind.
Here are a few medical supply retailers families with children on the spectrum have recommended:
The Medical Supply Group
Cristia Medical Supply
By Amy KD Tobik
This article was featured in Issue 34 – Autism Sleep, Bedtime and Hygiene Routines