California's Regional Center System: Tips and Tricksby Kimberly Kaplan
What is a regional center?
In California, there are 21 regional centers. Regional center clients include people on the autism spectrum as well as people with cerebral palsy, mental retardation, epilepsy, and all other cases involving developmental delays. Recently, my child's regional center reported that approximately 90% of incoming cases are autism-related.
Regional centers are state and federally funded agencies whose clients, of all ages, receive services. These services range from early intervention to housing and everything in between. The funding for regional centers comes from the state general fund as well as some Federal Medicaid funds. A regional center, however, is not a state agency.
Because regional centers are public-private partnerships. Persons with disabilities and their parents are involved in their governance. Each regional center is its own corporation with its own board of directors. Each regional center is the same but individual. Each has local control and they can set their own policies.
What do regional centers specifically do?
They provide evaluations and many different types of services for persons with special needs. They also provide information in many different languages and classes. Everything that is provided is done so by professionals in the field of special needs. The services themselves are provided by facilities that are contracted with the regional center.
How do you begin with a regional center?
When we had concerns about our 12-month-old, we called our local regional center. Each regional center covers a certain area. If you call one, and you do not live in their region, that regional center can look up which one you do need to contact and provide you the appropriate phone number.
After a brief phone interview, our child's regional center invited us have our child evaluated by a behavioral child psychologist. That "intake specialist" determined that our child had developmental delays. Typically, children under the age of three do not technically have a disability - they have developmental delays.
Our child was given services from their Early Intervention Program. He began those services - a floor time program - at 14 months old. At 18 months old, he was re-evaluated and given a provisional diagnosis of autism. Speech and OT were added to the floor time service. Later on, we received funding to send him to a pre-school as well as a social skills class.
It was not always smooth sailing, however, in dealing with our child's regional center.
Here's what I tell parents.
First, I tell them to make that initial phone call. Parents are reluctant to ask for help sometimes. Yet with our young kids on the spectrum, or even the ones with developmental delays, the sooner the better. If you wait, you are only harming the development of your child.
Second, after you being to receive services, if you feel you need to contact your child's service coordinator, even if you feel it's a "little thing," make that phone call. It may turn out to be a larger issue than you thought.
If the issue is more pressing, like the loss of a facilitator, then you make that phone call immediately. AND you call again if the service coordinator does not get right back to you.
The regional center policy is 24 to 48 hours. They do not go out of their way to tell you this policy, however. They say they do, but I'm sure more parents don't know it than do know it.
I did not know it in the beginning at all. I had an issue that I needed to discuss with my child's early intervention case worker. I called her, and because I was being polite, I waited for her to call me back. I waited two weeks!
Why do they wait?
In their defense, it's typically not waiting on purpose. They do have lives, for example. But there's even more to it than that.
These days, regional center case workers have approximately 100 cases. Your child is just as important as the other 99 children/adults they have on their caseload.
But, you cannot let that large number make you feel guilty. This is your child we're talking about! Ignore that large number and call them back.
Yes, I'm advocating nagging.
Here's another way to look at it. This agency has accepted your child in a program that is time sensitive. Your child only has one childhood. It is my firm belief that the years from two to four are imperative for a child's development - especially when that child is on the autism spectrum. Those years are critical in the world of autism.
If though they're overworked and most are decent people, if your child's case worker does not call you back after that second message, call and ask for their supervisor.
My child's regional center also has an "emergency" case worker, a case worker who is covering for other case workers out on vacation, out sick, or out in the field.
Follow this protocol with your very first issue. It will put your child's service coordinator on notice that you are a parent that will not go away. You care about your child's well being and you will call back and you will, if necessary, call their supervisor. They will remember you.
Also, once your child becomes a regional center client, make sure you complete their customer service queries. They do want the feedback because they do want to improve their services. They know their funding is squeezed, but they still feel an obligation for our persons on the spectrum.
How else can I deal with a regional center?
Know your rights under the regional center bylaws.
One thing I tell parents is that they have the right to attend one conference or seminar per year. That one conference/seminar will be paid for by the regional center. All you have to do is ask your child's case worker.
Please do not let this valuable opportunity lapse! It is for your benefit and your child's benefit and it supports the entire regional center program. It is worth it for all of you.
I have always felt lucky to be living in California while raising my child with autism. I honestly do not know where he would be today without their enormous assistance, especially in terms of funding our child's services. Behavioral services are not cheap.
With that in mind, what else would I recommend?
You can always contact a resource specialist. Resource specialists are a department with the regional center. They are there to help you.
Ask that person to put your email address on an email blast that will keep you informed of events, seminar, conference, and classes. Most are local, which means you do not have to travel.
You do not have to attend any of these events, of course, but forget the excuse that you didn't know how to get yourself out there. Regional centers will work with you. Trust me, I know.
Your child's regional center is on your side. Work with them, be polite, be honest yet firm and forthright. They do care about our kids. And they can make a difference.