My son just turned 3. For most, this simply means a party and presents. And for Benjamin, he had all that and then some. But turning 3 for him, for us, is bigger than just the train table his grandma sent him, bigger than the party at Travel Town.
Turning 3 for Benjamin means he has aged out of the Early Start program at Regional Center.
Now for those who do not know what Regional Center is, for I did not know what it was until I needed to, I found online this good description, “Infants and toddlers from birth to 36 months may be eligible for early intervention services if they have a cognitive, communication, social or emotional, adaptive or physical or motor developmental delay, or are at risk for a delay in their development.”
My son was at-risk because of a birth trauma. They helped us with all of the therapies he needed to get stronger. When he reached 36 months, he was strong enough to “graduate” to the school district.
California has been quite generous when it comes to services for children. We would have been completely strapped and financially overwhelmed if we would have had to pay for all of our son’s services, and we are comfortable and have insurance. Regional Center provided access to services and paid for it. They were a tremendous help during a scary time in our lives. And Benjamin got to a point where he no longer qualified because he was doing so well. Perhaps if he had not received so many services he would still be in the system.
What is unfortunate is that other families may not have these services or opportunities that we had, that my child had, because of budget cuts at the state level. Regional Center is taking a serious hit. Children who are at-risk, say from a birth trauma or being premature, will not be getting services the way they used to. It will be devastating for these children, who, like my son, benefit tremendously from therapies. To qualify now, children must be at least 33 percent delayed. And that kind of delay is hard to see with children under 2. For those who are at-risk or who have been catching up because of their therapies, they will no longer qualify.
Benjamin was lucky to have been born when he was and to a neurotic mother who wouldn’t let any developmental blip pass without an evaluation. If he were born now, Regional Center would probably not be part of his care, though it should be.
I sat down with the woman who runs the early intervention program, Step By Step, that Benjamin has been attending, Shelley Cox. Shelley is not just the head of my son’s school, she has become my friend. For she is also a mother in this world. She is mother to Kristina, who has cerebral palsy. After Kristina’s birth and finding her way in this world of services for special needs children, Shelley not only got involved, for Kristina’s sake, but she got her degree in child development and eventually went on and founded a school that provides early intervention to children. Shelley also runs a group called TIPS (tips-foundation.org) that provides scholarships to families to access services and to providers to further their education.
Children deserve access and Shelley and others like her are trying to do just that.
But referrals are down 60 percent at Step by Step. Families who cannot afford services for their children are no longer having the state help out, but those children still need help.
Shelley thinks parents need to get angry. These original rights to early intervention were created by angry parents. And if getting angry is what needs to happen then let’s get angry.
But I am not angry. I am grateful.
I have such gratitude that we were able to provide all of this to our son and that he has flourished. When your child is delayed, all you want is for them to climb and jump and be safe on the playground and engage in play like everyone else. Now that he is doing that, we could easily just walk away and be thankful for what we received.
But I want other children to benefit the way Benjamin has. I want other families to feel that there is something they can do, that they can bring their child to an expert and they can do the work and they can see the progress and the beauty in their child as they prosper and develop.
I cannot expect California to fix things overnight, and so I must look to other ways to help. I have expressed interest in joining the board of TIPS. I am writing this so you know what is going on. I am telling our story.
So if it is anger that motivates you or gratitude or something else, let’s get involved by contacting our representatives or by committing ourselves to this work, like Shelley, or by donating to TIPS and other organizations that help children prosper.
For children, like my son, should leave Regional Center because they no longer require services, not because their families, or the Regional Center, can no longer afford them.
Rachel Zients Schinderman lives in Santa Monica with her family. She can be reached at Rachel@mommiebrain.com
