PERSONAL PERSPECTIVES : California’s Version of Apartheid: A MediCal Card

The state Department of Health Services, which administers MediCal, wants to cut the Durable Medical Equipment budget, and I’m frightened. I’m frightened for the thousands of adults and children who use manual and motorized wheelchairs to get around, who use aspirators and respirators to breathe, who need walkers and canes to support them, who need special toilet seats, shower chairs and lifts. The proposed 22% cut would threaten our independence--and some of our lives. For if the state gets its way, no vendors of this kind of health equipment will accept a reduction in a price they already consider too low.

I cannot walk because I had polio when I was 5 months old. But I’m quite active, attending church, organizing political activities, meeting with groups, shopping and visiting family and friends, often unassisted. I owe this all to my motorized wheelchair.

Everyday I put on a pair of shoes--the 24-volt batteries that power my wheelchair. My “legs” has become a part of my body. When my wheelchair breaks down, I panic, as would anyone who suddenly lost the use of their legs. I’m desperate for assistance.

It used to be that a single telephone call to MediCal for an emergency repair was all I needed to get my wheelchair working again. Now, no more emergency repairs are allowed; it takes MediCal six weeks to approve any request. Even then, wheelchair-repair companies complain that it takes too long--120 days, on average--to get reimbursed by MediCal.

As a MediCal recipient, I used to feel welcomed and accepted by doctors and wheelchair companies. Now when I take out my MediCal card, I feel as if I’m showing the California version of South Africa’s infamous “passbook,” an emblem of poverty and discrimination, a warning to health-care providers that they are not going to get paid decent fees or if they do, the payments will be late.

This is especially troubling for people dependent on wheelchairs. We not only need money for emergency repairs; we also need it for wheelchair maintenance. Regular maintenance saves dollars in the long run.

Last year, it became difficult for me to breathe. After some tests, I was told that I needed a ventilator to help me breathe at night. It took me a month to get used to sleeping while wearing a nasal mask with a plastic tube attached to a ventilator that hisses and beeps all night. But I can no longer live without my ventilator, even if it makes for a strange bedfellow. It is now a part of my body. Without it, I gasp for air during the day.

The proposed cuts in Durable Medical Equipment would probably mean that I would have to pay the $658-a-month rental for the ventilator, since no vendor would accept a lower price. Since state law prohibits MediCal and a recipient from sharing the cost of this kind of equipment, I would be stuck with the full cost of the ventilator rental, which I cannot begin to afford.

Just how ridiculous are these proposed cuts? A typical lightweight wheelchair costs about $2,000. Since a wheelchair usually lasts roughly five years, the expense is close to $400 a year. Compare that with the cost of keeping a disabled person in an institution--$5,000 a month, or $60,000 a year, according to the MediCal Task Force. You could buy 30 lightweight wheelchairs for $60,000 and free 30 people from institutions. Institutional care, it should be noted, is not a viable option for people with disabilities who want to preserve their health and independence.

If you imagine that state programs for the disabled are bankrupting state government, consider how we live. The monthly check of $630 goes to rent, utilities and food. We often forego much-needed medical procedures and prescriptions because MediCal doesn’t cover them. While a friend had to wait--nine months--for MediCal approval of a crucial test, she further deteriorated. She used to be able to feed herself; today, she is a quadriplegic languishing in a nursing home, far from friends and family.

No one in his or her right mind can charge us with extravagance. Times are hard because some people in government decided that hundreds of billions of dollars should be spent on the military and the savings-and-loan bailout.

We, the poor of this country, have become the budget experts. For who can live on $630 or less a month? We do. We have acquired skills to stretch the dollar, though at the cost of our well-being.

Since we are accustomed to economic struggle, we are not insensitive to the pain of recession. We know how to do without. But cutting funds for life-sustaining medical equipment has nothing to do with economics. It is simply immoral.