Governor's Ax Hangs Over My Disabled Child

My wife, Monica, and I are the parents of a 3-year-old with developmental disabilities. Ayla, our daughter, has a condition known as Larsen's syndrome, a very rare muscle-skeletal disorder. When she was born, all her major joints were dislocated, she had a dual 90-degree bend in her cervical spine, a partially open palate, clubbed feet and a small hole in her heart.

Ayla has undergone 18 surgical procedures, countless doctor appointments and trips to hospitals, clinics and specialists. We frequently travel hundreds of miles to get to these places. Despite these hardships, Ayla is a vibrant and intelligent girl who knows sign language and can maneuver a wheelchair.

It has been reported that Gov. Arnold Schwarzenegger, in trying to deal with the budget crisis, has proposed suspending the Lanterman Developmental Disabilities Services Act of 1969. To us, the governor is saying our child doesn't deserve a chance at a good life.

This act was intended to provide certain rights to individuals with disabilities. Among them: the right to treatment and services that meet individual development needs; the right to live as normal, productive and independent a life as possible; the right to a full measure of dignity, privacy and humane care; the right to participate in a publicly supported educational program.

To the parents of a disabled child, suspending the Lanterman Act is the equivalent of President Bush suspending the Bill of Rights. It would take away funds that enable our daughter to receive physical and speech therapy and other services and go to school.

We have relied on state, county and other nonprofit services to provide equipment and assistance when our primary insurance can't or won't help us.

In order to be eligible for these services, our income must stay below a certain level. Paying for these services on our own is an impossibility. To offer some perspective, here is an approximate breakdown of what it would cost us to provide the same services ourselves.

Estimated monthly costs: feeding pump, $900; supplies for pump, $800; miscellaneous medical supplies, $1,000; in-home care, $4,400; physical therapy, $3,000; speech therapy, $2,000. There also are expenses that we already pay ourselves: expenses during trips to Childrens Hospital Los Angeles, $250 to $500; monthly prescriptions co-pay, $200; diapers, $100; transportation (car payment, insurance and fuel), $800. Total we would pay per month: $13,700. Our monthly income: $4,200.