By Team Tomorrow
Published June 21, 2021
When you have a special needs child, you’re more likely to work less hours and simultaneously spend more on family expenses. While raising a differently-abled child is a life-enriching and transformative experience, the costs and additional time allotted to care taking can run your pocketbook dry quickly.
That’s why we want to make sure you’re not spending more money than you have to. The very first thing you should do when your child is diagnosed is get them onto Medicaid. Even with more states enacting legislation requiring health insurance companies to cover the needs of disabled children, many who get their health insurance through employment at a large company are generally excluded from these legal protections.
That’s because large companies tend to self-insure, hiring an insurance company to administer their healthcare plan rather than actually providing it. If your state allows you to get your child onto Medicaid even when your income exceeds eligibility guidelines—which many states do through TEFRA or HCBS waiver programs—the Medicaid coverage can fill the gaps when your employer-sponsored health insurance falls short of meeting full coverage.
Medicaid coverage can vary from state to state. However, it’s worth checking out your plan to see if you’re paying for commonly-covered medical supplies and services out of pocket when you don’t have to be. Typically, you should be able to get the basics like therapies and additional doctor visits covered, but Medicaid can cover so much beyond the routine expenses special needs parents are so familiar with.
Most kids are in diapers until they’re about two, but potty training may be more difficult or even unrealistic depending on your child’s needs. That’s why many states cover diapers if your differently-abled child is age three or older. You won’t be able to pick these up at your local grocery store; you’ll have to order them from a medical supplier who accepts your child’s insurance. You can ask your pediatrician or your insurer for a list of approved suppliers.
You might need to install a wheelchair ramp to your vehicle or widen doorways in your home to accommodate your child’s needs. Any vehicle and home modification can be expensive, but this tends to be especially true when the changes are needed for special needs children.
Medicaid usually covers these costs, so manufacturers are able to charge a fair premium for their products. It’s great for the creators of these products, but if you don’t have Medicaid—or you don’t know you can use Medicaid to get coverage—paying out of your own pocket can easily bankrupt you. For example, to get a safe place for your child to sleep, you could easily spend $5,000+ on quality bedding accommodations. And that’s just one, singular accommodation out of potentially many that your child needs to live a safe and happy life.
If your child needs supplemental nutrition a la Pediasure or Nutramigen, you can easily find yourself spending ridiculous amounts of money just to keep your child alive day-to-day. For example, in some parts of the country, the per-unit cost of a single serving bottle of Pediasure can exceed $2. If you child needs two to three of these per day, your grocery budget could go up beyond an additional $120-$180/month.
Medicaid typically covers these supplements or hypoallergenic substitutes. Again, you will have to order product directly from approved medical suppliers rather than picking it up during your grocery run.
You may be a caretaker, but that doesn’t mean you’re invincible. The physical and emotional labor that goes into special needs parenting is real. It’s worth every second, but at times it’s draining.
Many states cover respite care to relieve you of your duties so you can go to the grocery store, make your own doctor appointment, or even just take a few minutes to take care of your own mental health. These certified workers watch and care for your child while you get out of the house, or in some cases while you sleep if your child needs round-the-clock supervision.
It is important to note that respite workers are not allowed to watch any other children you may have; they’re not getting paid for it, and insurance won’t cover it. So you’ll either have to take your other children with you or find someone else to watch them while you take care of yourself or catch up on other household responsibilities.
Many states, however, will allow family members to get certified to become respite workers. That means that you can have someone you know and trust and who already knows your child be the one to provide services. It also means that family member can be paid for the time they spend serving as your respite worker. They won’t be rolling in cash, but at least there is some compensation.
It happens all too often: Medicaid covers the product or service your child needs, but your insurer denies a very essential and expensive claim. How these companies can collect government funding for facilitating Medicaid and simultaneously deny disabled children the services they require and are entitled to is mind-boggling and morally corrupt.
But it happens. When you get a denial, the number one thing you should do is appeal. Work closely with your pediatrician as you craft your appeal letter as they’ve likely jumped through these hoops before. It’s also a good idea to educate yourself on Medicaid law so you can work quotes from legislative documents into your appeal letter. For example, if you have an autistic child you should familiarize yourself with the 2014 CMS Letter, or if your state supplies coverage to disabled children through TEFRA, you should learn the ins and outs of that system.
Paperwork battles are no fun, and they’re meant to wear you down. But staying on top of denied claims and available coverage options can be the difference between going broke and providing the best possible life for your child—both through accommodations and healthy family finances.
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