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.

Additionally, because Ayla’s condition is so rare (1 in 800,000), there are no in-home care professionals in our area who are qualified to care for her who are not at the registered nurse level. To have an RN for 40 hours a week costs $1,100. Therefore, my wife qualifies as a paid care provider (another service the governor wants to severely cut). This income constitutes 40% of our total income.

If this service gets cut, we would lose our home. We might have to leave the state to start over someplace where there might be better benefits for Ayla. The problem is that all states are feeling the economic crunch.

For years, we’ve heard Schwarzenegger talk about how important children are. But in deciding how to fix California’s budget problems, people with disabilities and children would be among the first hurt.

I cannot begin to describe the mental, emotional and physical strain having Ayla has put on our lives. But it has been worth it. We have a beautiful daughter who has an excellent chance at a good life. Twenty years ago, she would not have lived more than a month. Please do not take away our chance at giving her every opportunity open to her.