Many people view those of us who are paralyzed as a class of individuals who take from society, rather than giving back. We rely on public and private insurance to cover the costs of our medically-related expenses, are often unemployed, and can have difficulty getting out and about on a regular basis due to a lack of reliable transportation. I contend that they are wrong, very wrong, and that we are, instead, viable contributors to the economy through our purchases that are not covered by whatever insurance we have available to us.
It is important to clarify the insurance issue, as those who must purchase private insurance are paying through the nose for that "privilege." Some of us have earned that insurance as a benefit of employment, but must still pay high premiums due to the presence of our pre-existing conditions. Public insurance, Medicare or Medicaid
, has been partially paid by the contributions made to the Social Security
System while we were working or by the contributions of our parents. Medicare insurance comes with additional premiums based on income, and complicates lives through the presence of the dreaded 'doughnut hole' in Medicare Part D. Those who survive on Medicaid are destined to be impoverished throughout their lives, unless able to find employment.
None of those types of insurance covers everything we need to survive. In order to determine the extent of purchases of items that are not covered by insurance, I solicited information from several of my friends who deal with paralysis due to a variety of conditions. Their responses revealed that some of us pay hundreds of dollars per month "out of pocket" in order to stay healthy or maintain functionality.
Most insurance covers prescribed medications to some extent, but in recent years the list of covered items on the drug formularies has gotten shorter. This has resulted in the need for those who want to maintain that particular type of medication to purchase it through other sources rather than through the pharmacies used by their insurance providers.
Following, in no particular order, is a list of some of the types of medications, vitamins or supplements that are being purchased by those who responded: Vitamins of all types; laxatives; stool softeners; naturopathic remedies; minerals such as magnesium, zinc, iron, potassium or calcium; aspirin or similar pain relievers; allergy medications; melatonin or other sleep remedies; fish oil capsules; D-Mannose, cranberry tablets or capsules and many more too numerous to list here. Laxatives and hemorrhoidal suppositories, such as Bisacodyl, Enemeez® and Magic Bullets, are used regularly by many people, but once again not covered by most insurance.
In our battle to stay healthy, many of us require our caregivers to use latex or plastic gloves and sterile lubricant in order to maintain a sterile environment. The insurance companies would rather take the chance on curing periodic infections instead of paying for such preventive items. It amazes me that such important items for our continuing health are not covered by many insurance policies.
Our mobility devices, and the maintenance of them, are high ticket items. Many people who use manual wheelchairs on a regular basis have also found it necessary to purchase power chairs as backups, and the batteries and maintenance of them are not covered by their insurance. The same goes for stronger or power assist wheels for manual chairs, seat cushions and the replacement covers for them, especially if they are not approved by the insurance policy. Those of us who are paralyzed at a higher level require the use of shower or commode chairs or adapted toilet seats, but they are seldom covered. Some people even find it necessary to buy their own catheters and the adhesive wipes for adhering them.
Those who want to drive their own vehicles often pay for the modifications, hand controls, lifts and EZ-lock devices that allow them to do so. While some state vocational rehabilitation agencies support modifications of a first adapted vehicle, many have cut back in that area.
If you want to stay fit, be prepared to pay from your own resources for the tabletop exercise cycles, handcycles, specialized wheelchairs, standing tables and similar items not paid by insurance. Those who need some modifications to be able to stay in their homes will be paying out of pocket for grab bars, lowered light switches, lever-type door hardware, and any necessary environmental controls.
Colostomy products, urine collection bags and cleaning supplies for them, moist towelettes, disposable bed pads, adult diapers, absorbent pads, protective boots and heel pads, saline or peroxide spray, adapted dishes and silverware, and a variety of skin care lotions and ointments can add up to hundreds of dollars per year in unreimbursed costs.
The need for safe transfers in and out of wheelchairs or bed might require the use of a Hoyer or similar lift. Most insurance won't cover that purchase. The costs of medical homecare, such as personal care assistance, can easily reach $30,000 for those with the most needs. Medicaid will cover some of that cost, but not in every state.
Those who need frequent medical visits may end up paying a high amount each year for doctor or therapist co-pays. In order to avoid those increasingly higher co-pays, many individuals seek out chiropractic, massage and acupuncture treatments from outside providers. That pattern is being repeated nationwide, and will likely be even more necessary in the future.
Are we a drain on society? I don't think so.
While our contribution to the economy goes unrecognized, I contend that the private investment we make in order to maintain our health and function adds up to billions of dollars each year. Without us, plenty of suppliers and providers would probably go out of business.
With that in mind, how about showing us a little more respect, quicker response to our requests for service and faster approval of our insurance claims?
© 2013 Michael Collins