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Be Proactive! - Insurance and Big Ticket Items

There are two big ticket items that a lot of patients with ALS (PALS) will obtain through the course of their disease, a power wheelchair and an augmentative and alternative communication (AAC) device.

Power Wheelchair

Because of the constantly changing needs of PALS, having the most appropriate wheelchair can be a challenge. Most insurance companies follow Medicare guidelines with regard to what type of wheelchair can be obtained as well as the paperwork required. Some private insurance companies are more/less generous with regard to coverage for power wheelchairs - check you coverage before you purchase anything!

What this means is that, for most PALS, it is not wise to have your insurance purchase a manual wheelchair or other mobility device, such as canes or walkers. Medicare will only pay for one wheelchair every five years, so if an inexpensive manual wheelchair was purchased, it may be very difficult or impossible to get another wheelchair from Medicare within five years.

Fortunately, PALS have the ability to borrow items from the loan program that would prevent them from having to use their insurance coverage for this relatively inexpensive item.

It is advised that PALS use their insurance coverage for an appropriate power wheelchair. These types of wheelchairs typically cost around $20,000 - $30,000.

In order to obtain an appropriate power wheelchair, a PALS should have an evaluation by a qualified professional. The person who makes the power wheelchair recommendations should have no financial incentives with regard to which wheelchair is purchased. There are many options that PALS can choose for their wheelchair, but most power wheelchairs for PALS should have the following basic features:

- A seat that can accept a range of pressure relieving cushions - not a seat that looks like a car seat.
- A wheelchair back that can have a headrest attached.
- Power tilt - the ability to tilt the wheelchair's seat back with a motor.
- Adjustable armrests and footrests.
- The ability to have alternate methods of driving added at a later date.

Ordering a custom power wheelchair is a very individual process. These are just some general guidelines. PALS should be involved in the prescribing process and try out features before anything is finalized.

The main thing to keep in mind is that the process to obtain a power wheelchair from your insurance company can take anywhere from three to six months. This means that you may have to go for an evaluation before you truly need all of the features of your power wheelchair. This may seem like giving into the disease, but a better way to look at it is that you will be able to maintain your independence if you have the correct type of wheelchair when you need it.

Being proactive allows the PALS and their care giving team the time to calmly make decisions about what features they will need. This is important because once the wheelchair is obtained, some things cannot be added/subtracted from the wheelchair.

Augmentative and Alternative Communication (AAC) Device

AAC devices are the types of devices that help PALS to communicate effectively once they notice changes in their natural speech.

Medicare covers the majority of the cost of AAC devices. If you are not sure if your insurance covers this type of assistive technology, call you insurance company and ask if they cover "speech generating devices." You will need to talk to a supervisor to get an answer on this because this is not a benefit that is often used.

As with power wheelchairs, these are high ticket items. An AAC device that PALS typically use can range from $5,000 to $15,000.

The process for getting an AAC device is not as involved as the process for a power wheelchair, but it still takes an extended period of time. Depending on the type of device and insurance companies involved, the process should take around three months to complete.

Again, being proactive can allow the PALS to make an educated choice as to what device and what features will suit their needs.

The features that most PALS will need in an AAC device are:

- The ability to change the access method. This means that the device can use what is called "direct selection" and at least one method of "indirect selection."
- The ability to use the device for telephone conversations, if desired.
- The ability to use the device for computer connection, if desired.
- The ability to store message and/or customize the display to the user.
- The ability to attach the device to your wheelchair.

There are many different devices and access methods available. An evaluation by a qualified professional will provide demonstrations of the range of devices and allow you to make your own decision as to what device best suits your needs. The evaluator should not have any financial ties to the device being recommended for your insurance to purchase.

Be aware that once the device is obtained through your insurance company, the vendor of the product or the person who made the recommendations should provide some type of training/set up for the device. Please be sure to ask the evaluator how training and set up are going to be handled.

Special Note About Hospice and Nursing Homes

If a PALS is on hospice or in a nursing home, they are not eligible to obtain these items through their insurance. When a PALS is put on hospice or in a nursing facility, your insurance company is paying the hospice or nursing home for your overall care. The vast majority of hospice services and nursing homes cannot purchase a very expensive custom option for one patient. They just are not set up that way.

This is not to say that going on hospice or entering a nursing home is not the best choice for some PALS. The main thing to know is that if you are contemplating using either of these services, and you have an order for a power wheelchair or AAC device in process, you cannot go on hospice or into the nursing facility until the device is delivered to your home. Since most general hospice/nursing home patients are not pursuing this type of equipment, this may not be something that the facility will bring up to you, so just be aware. There are some exceptions to this.

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