My wife Monica and I are the parents of a three-year-old girl
with developmental disabilities. Ayla has a condition known as
Larsen’s Syndrome, a very rare (best estimate is 1 in 800,000)
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 palette, clubbed feet and a small hole in
her heart.
My wife Monica and I are the parents of a three-year-old girl with developmental disabilities. Ayla has a condition known as Larsen’s Syndrome, a very rare (best estimate is 1 in 800,000) 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 palette, clubbed feet and a small hole in her heart.
Ayla has undergone 18 surgical procedures, countless doctor’s appointments and numerous unexpected trips to hospitals, clinics and medical specialists. We frequently travel hundreds of miles to get to these places, which range from Stanford Medical Center to Children’s Hospital Los Angeles.
During the first 2 1/2 of these past 3 years since Ayla was born, I was spending 50 to 75 percent of my time traveling for my job while my wife Monica, with the help of our oldest daughter, cared for Ayla. Six months ago, I began a new job working for the city in which I live and we are finally able to see some stability come into our lives.
At least it seemed stable until we read two articles in the L.A. Times from Nov. 26 and 27 reporting what Gov. Schwarzenegger had proposed to cut to try and reduce the state’s deficit.
By far, our biggest concern has been with Gov. Schwarzenegger’s proposal to suspend the Lanterman Developmental Disabilities Services Act of 1969.
For those of you not familiar with this act, it was intended to provide certain rights to individuals with disabilities. Among these rights are:
– The right to treatment and habilitation services that meet individual development needs, such services to be provided in the least restrictive setting.
– The right to live as normal, productive and independent a life as possible.
– The right to be provided a full measure of dignity, privacy and humane care.
– The right to participate in an appropriate, publicly-supported educational program.
To the parent of a disabled child, suspending the Lanterman Act is the equivalent of the President of the United States suspending the Bill of Rights. Suspending this act would take away many funds that enable our daughter to receive physical therapy, speech therapy, go to the school she currently attends, as well as many other services we’ve fought hard for and struggled to maintain.
To us, Gov. Schwarzenegger is saying our child is worthless and doesn’t deserve a chance at a good life.
We have relied upon state, county and other nonprofit services such as SSI, Medi-Cal, IHSS, California Children’s Services (CCS) and Tri-Counties Regional Center in Santa Barbara County to step in and provide the equipment and services she needs when our primary insurance either can’t or won’t help us.
These organizations provide Ayla with equipment, care and other services. In order for us to be eligible to receive these services, certain income restrictions apply. The income from my job cannot go above a certain amount. If it does, services either get cut or removed from availability. We also cannot have any type of savings, or investments because they are considered to be income resources. Paying for these services on our own is an impossibility. If someone were to hand $1 million to us tomorrow, the money might get us through the next year only.
The minimum annual net income required to cover these services is approximately $150,000. Keep in mind this does not include food, clothing and shelter for the whole family, along with other amenities such as being able to rent a movie once in a while. By the way, I won’t be renting “Terminator 3,” this I can promise you. And if we want to buy a house where we live, add another $100,000 to the income.
To give everyone some perspective on the costs involved, here is an approximate breakdown of what it would cost us to provide the same services we get now by these agencies:
Feeding Pump: $900/month
Supplies for feeding pump (bags and food): $800/month
Misc. medical supplies: $1000/month
In-Home care (if available): $4400/month
Diapers: $100/month (we currently pay ourselves)
Physical Therapy: $3000/month
Speech therapy: $2000/month
Trips to Children’s Hospital Los Angeles: $250 to $500 (we currently pay ourselves)
Prescriptions: $200/month in co-pays (we currently pay ourselves)
Transportation: $800/month (includes car payment, insurance and fuel, which we pay)
Total of services per month: about $14,000
Our current monthly net income: $4,200
Difference: $9,800/Month
Because Ayla’s condition is so rare, there are no in-home care professionals in our area who are qualified to care for her that are not at an RN level and that we can afford. To have an RN in our home for 40 hours a week is $1,100. Therefore, my wife qualifies as a paid care provider by the State of California (another service the governor wants to severely cut). This income constitutes 40 percent of our total household income.
If this service gets cut, we would lose our home, I may have to quit my job and we might have to leave the state to start all over again somewhere else, where there might be better benefits for Ayla. The problem is that all states are feeling the crunch economically. California is not the only state with a bill it cannot pay.
For years, we’ve listened to Arnold Schwarzenegger speak publicly about how important children of all ages and abilities are to the future of America and the world. But now it’s time to decide how to fix California’s budget problems, and children are about to be among the first to get hurt the most along with many other people of all ages with disabilities in our state.
I will not pretend to think most people will have any comprehension of what it’s like to have and raise a child with developmental disabilities, because unless you have one yourself, you’ll never fully understand or appreciate what it takes to raise a child like this. I cannot begin to accurately describe the mental, emotional and physical strain having Ayla has put on all of our lives. But to us, it has all 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 after birth. We thank God every day for the blessing we have been given. Please do not take away our chance at giving her every opportunity there is open to her, our ability to keep our medical bills down and to stay here in California, where our home is.
David Eccles,
Lompoc
