Case in his Kid Kart Express that we got from the UCP Equipment Exchange program. We used it at no cost for about 4 months until his Ormesa came and then we returned it.
Special needs equipment in general can be expensive and specialized strollers and wheelchairs can be anywhere from $500 to $5,000. As such, most journeys to find a special needs stroller or wheelchair involve insurance.
Unlike researching and deciding upon a piece of equipment for your child, insurance will require medical justification for the equipment itself, the specific type/brand that is recommended, and any accessories to it. Part of that process generally involves an equipment evaluation performed at a “seating clinic”, “wheelchair clinic” or some other name given by your local hospital.
The appointment will require that you bring your child to be measured and you will also answer questions about him or her and their condition and challenges. However, just showing up at such an appointment without some legwork before and after could sometimes end in an inadequate piece of equipment. Not because your insurance or the evaluator were necessarily trying to give you something cheap, but they are only required to recommend what is medically necessary. They may not have a full understanding of your child’s needs and thus, may not make the best choice.
So as parents, it is often up to us to do some research, think about our child and his or her needs, and come prepared. Here are some recommendations for what you should do before, during, and after an equipment evaluation for a special needs stroller or wheelchair:
Before an appointment with a seating/wheelchair consultant
- Find out the process for wheelchairs and other equipment through your hospital and/or insurance. If you have case management for your child with your insurer (and you should if your child has a chronic medical condition), speak with your case manager first as he or she often make this process more streamlined since they should already understand your child’s condition and needs.
- Become familiar with your insurance coverage, and other local equipment options such as community agencies, specialized county services, etc. If you have case management for your child with your insurer (and you should if your child has a chronic medical condition), speak with your case manager first as he or she often explain things to you and make this process more streamlined since they should already understand your child’s condition and needs.
- Think about all of your child’s potential equipment needs now or in the near future. Explaining your child’s condition and needs to evaluators one time versus several over a year or two (unless big changes happen) is always a time, energy, and emotion saver. Specifically for us, we considered the stroller/chair, feeding option, and carseat prior to our visit. Because Case was overweight for any highchair at the time and he still needed restraint and support for eating, we decided to pursue a feeding option at the same time as a stroller/chair. This was important because it allowed us to consider options that transferred from a stroller base to a feeding/activity base as well as options where those are separate.
- Think about your child’s and family’s needs associated with the potential equipment. What are the purposes of the equipment? When and where will you be using it? What additional features might be needed. Here is an example of my thought process for Case.
- Talk to friends and research online to become familiar with what stroller/chair options there are out there and what people think of them. Part 2 of this series will discuss how to compare and great places to start in your research. If there are certain strollers you are interested in, you can discuss them with the PT or consultant at the appointment and they can probably (a) further discuss the pros and cons, (b) tell you more about whether these types have been covered by your insurance before, and (c) be sure to ask you about and discuss in the documentation each type of accessory that may be needed.
- Consider how to “test drive” different options such as through other families, local agencies, UCP equipment exchange programs, mobility companies, etc.
- Search for the criteria used by your insurer to evaluate and approve or deny various pieces of equipment such as wheelchairs and their accessories.
- Analyze your child’s needs compared to your insurer’s criteria. We’ll talk about this more in Part 3 of this series.
At the appointment
- Bring at least one other adult with you. You need someone to care for your child so that you are able to focus on meeting this very important need for your child and your family.
- Bring at least two copies of your explanations, analysis and documentation, along with a booklet or two from the National MPS Society or other organization explaining your child’s condition, and give one copy to each person working on your child’s equipment needs. There might be a nurse, physical therapist, equipment representative, or other consultant there.
- Offer to e-mail the documentation to these people to assist them in preparing the letter(s) of medical necessity.
- Ask lots of questions. They will be measuring your child, looking through equipment options, asking you questions, and reviewing your documents. You need to be a full participant in this process instead of letting someone else decide or recommend what is best for your child. Understand what options they are considering and consider how each one might meet or not meet your child’s needs. Make your preferences known. Be sure to consider all possible accessories that might be needed now or in the near (within 5 years) future.
- You should leave the appointment with an understanding of (1) which options are in their top list, (2) what they consider to be the pros and cons of each, (3) how you might be able to “test drive” each one in order to decide, and (4) what the next steps are of them and you as well. You may decide on a specific chair at this appointment or agree to meet again after you’ve thought about it and test drove some options and/or they’ve done some more research.
After the appointment
- Depending on the next steps from step 5 of “At the appointment” above, you want to be sure to test drive each “finalist” piece of equipment.
- Along with the evaluator, decide on which specific pieces and brands of equipment would best suit your child.
- Be available to the evaluator to provide additional information or answer any questions.
- Check in with the DME (durable medical equipment) company the evaluator is working with every 2 weeks or so to see where they are in the insurance approval process. Be sure they have your number and agree to call you as soon as they have an approval, denial or other communication. Also be checking in with case management at your insurer.
After a decision
- If there is an approval, schedule for the DME company to deliver the equipment and adjust it to your child’s individual needs.
- If there is a denial, talk with case management, get a copy of the denial letter they send to you as well as possibly the denial they send to the physician which may more clearly lay out the reasons for the denial.
- Formulate a plan for appealing the denial. Talk with other parents who might be able to help.
- If insurance becomes no option at all, consider working with the National MPS Society or other organization for an equipment grant to cover your child’s stroller/wheelchair. Also consider that many local UCP’s have equipment lending houses with many types of chairs that might suit your child. Here is information on our local Nashville UCP Equipment Exchange.
I hope this list is helpful and if you have additional thoughts, be sure to add them so others can benefit!
Continue to Equipment Series – Part 2: Evaluating and comparing special needs strollers and wheelchairs
Copyright © 2012, Melissa Hogan. All rights reserved.