And Other Adventures in Managing Your Health Care
Mobility is a common concern for those with disabilities and their caregivers. Long term care equipment such as wheelchairs, shower chairs, and lifts are extremely expensive. These items are invaluable to people with disabilities, but sometimes people are new to using such equipment. Caring for these pieces of machinery isn’t complicated but there are some simple things that can be done to prolong their use. I have cerebral palsy and have used a wheelchair my entire life. In this article, I will relate some of my knowledge and experience to hopefully help inform those new to the use of wheelchairs.
Safety when using home health equipment is also very important. As they are vital to many aspects of life they are not items that are only used a few times monthly or weekly so using them safely is key to reducing accidents. This form of safety includes keeping things clean and wheels unobstructed.
Most manual wheelchairs are portable and easy to care for because they can be easily wiped down with a hot and soapy cloth, rinsed and dried very thoroughly. Any cloth surfaces will take longer to dry so you may want to clean them just before going to bed so that they can dry overnight. This should be done about once a month for manual wheelchairs or more frequently if you are very active or have bladder or bowel control problems.
Always do your best to avoid thick mud when out and about no matter what type of chair you are using. These kinds of things can cause an unsafe situation; making the chair difficult to move even after it leaves the mud. The mud can dry and make the tires and wheel axles making movement difficult and even cause it to stop! Obviously, this would not be a safe situation if you are outdoors; moving through a parking lot or busy sidewalk.
No matter what type of wheelchair you are using always avoid going onto uneven ground or pavement whenever possible. This can very dangerous causing the wheelchair to tip or completely capsize with you inside! It is always best to know the area you are traveling in and keep an eye out for alternate route and cracks or other deviations in the ground or pavement.
If you use an electric wheelchair, I would recommend getting flat-free tires if possible. In my experience, they are infinitely more safe than regular tube tires. Tube tires deflate completely and quickly leaving the chair off balance which is very dangerous. If one is punctured it can lead to the chair tipping or stalling at a crucial moment.
Electric wheelchairs are more complicated to care for and much more expensive. They usually have seating systems made specifically for the user to help align bones and muscles to provide maximum health, growth, and comfort for the person using it. Many people with disabilities are in their chairs for half a day or more with a few brief exceptions, adults especially.
It is vitally important to take time with wheelchair vendor companies to get the right seating system. These can cost several hundred dollars in and of themselves and need proper care. Some are stationary foam seats with leather like coverings in a pinch these can be wiped down fairly easily, but usually need hand washing once every few months. Hot water and soap are always the best option for cleaning seat covers and cushions. Hanging them to air-dry is usually the recommended way to dry them.
Electric wheelchairs are much heavier weighing about 3 to 4 hundred pounds. This is largely due to most of the materials used to make them heavy gauge plastic and metal. There are electrical parts that are encased in either plastic or rubber. Do your best to keep these encasements intact, if something does happen use electrical tape or plastic to cover any opening to protect it from potentially problematic water and debris and get a repair as soon as possible. Always make sure your chair is switched off when making these sorts of on-the-spot emergency repairs.
If your battery casings or controller casings crack DO NOT proceed with making any make shift repairs and call someone to assist you in moving to another chair immediately. Once you have reached safety contact your vendor or repair company immediately. Make shift repairs are meant for minor superficial shorts only. If you make any repairs on your own do so with a full knowledge of your chair and at your own risk. Always read the instruction manual before you begin using it.
Batteries usually need charging a few times a week if not everyday. Always operate on as full a battery as possible. The best time to do this is overnight or during a time when some sort of lengthy task is being done and other mobility equipment is being used.
I also recommend getting new tires as often as insurance will allow, even flat-free tires need replacement about once a year(or as often as replacement is allowed by your insurance company per wheelchair) as traction doesn’t last forever. I recommend replacement of batteries and any seating system as often as possible. During any replacement of parts or repair, it is very likely that you will be without your normal chair. These could take weeks or months and sometimes, no matter how hard you work a few years. This isn’t easy but you will come out stronger for it. I promise.
You may also incur costs of picking up or dropping off the equipment, this can range anywhere from 20 to 35 dollars each way, often due upfront. The average cost of many electric wheelchairs range in the tens of thousands of dollars.
Be prepared for the possibility of an uphill battle with your insurance company. If anyone within the process begins ignoring your calls, keep calling and don’t stop until they call back or go over their heads. Especially, if your safety or health or being put at risk by not having properly operating equipment or equipment that no longer suits what you need to be healthy. Be reasonable however, give the person time to actually respond, if you’ve made only one call to them and your equipment only needs a basic non-emergency overhaul call once give them a day or so to respond then call back. If it is an emergency repair that your chair or other piece of equipment needs, something that stops you from maintaining your health in some way or keeps you from moving about safely. Call at least twice a day until you get a response. Be polite but take down the name of every person you speak with, along with the date and time.
Gather prescriptions, referrals, and letters from every medical professional you are currently seeing or have seen recently. Be ready to spend time on the phone with the insurance company and others, take down names, customer service representative numbers also record the date and time of each call.
If the phone number called shows up on your phone bill(s) make copies of the bills with calls to the company on it. Highlight every single call and send the phone bill copies and a letter explaining the situation politely and calmly to anyone in charge or possibly everyone in a position to help. Be as polite as possible, it will get frustrating, people may be rude or cruel, but don’t be intimidated and keep fighting and stay as calm as you can.
These instructions apply for not just electric wheelchairs but any piece of equipment or procedure you may need that your doctor has prescribed or for which other medical professionals have diagnosed a need. Most people in the process can be very helpful, but I have found that those who are most vital to the process can sometimes seem to lack compassion or even basic manners, if they are too rude or cruel ask to see or speak with another person doing the same job or ask for their supervisor.
If they will not place you in touch with that person willingly, end the call politely, do a bit of digging, on the back of many insurance cards there are customer service numbers, e-mail addresses, or “snail mail” address use them to write a calm and composed letter of complaint. Another option is (and this is one I find useful and interesting) after ending the previous call, regroup, and try again I find that you’ll get in touch with a different and usually more polite and better informed person. The internet is also a useful tool for finding direct numbers to various departments on company websites.
If you move on to a different individual, who you have not been in contact with before about the situation, be as calm and polite with them as you were when your process first began. Odds are they know nothing of your individual situation, and remember they are not responsible for the behavior of previous individuals. As the old saying goes you can catch more flies with honey than you can with vinegar.
This information will only be useful if you use it wisely. As absolutely frustrating as caring for and maintaining equipment can be, remain calm and take notes. Persistence always pays off in the long run. It will be difficult there is no escaping that the key is to know what is covered by your insurance and who to contact when a problem arises.