Seeking Regional Center advice
Hello BPN: my son was recently assessed as being on the spectrum by the Regional Center and now qualifies for services. He is doing really well in school and at home, and I feel confident that he will continue to develop new skills to thrive as he ages into elementary and beyond. As a family we are doing so much better, blessed be! Additionally, our insurance now offers 90% coverage for OT, speech, and other services, which is new since we first pursued the Regional Center assessment. Now I'm trying to figure out if I should proceed with setting up a meeting with a case manager and getting connected with their services. I feel like we don't need it right now, and I am loathe to subject him to yet another professional who asks me questions about his deficiencies while he is within earshot (why do they think this is OK?). I am also unsure about the quality and type of services that we would get through the Regional Center versus going through our PPO insurance and having perhaps more options and control. BUT, if I decline to meet with the case manager, his case will become inactive and if we were to desire services in the future, he'd have to go through intake (and a possible assessment again).
Please share your recent experiences with the Regional Center and any advice you have. My son needs support, but we currently have a pretty good team through his school IEP and private pay. Should I thank them for the diagnosis and go on our way, or stay within their system just in case? Thank you!
Parent Replies
Hi! I have experience working with the Regional Center from a previous position as a pediatric medical social worker at Children's Hospital. I think their services are generally high quality. My take is that if your son qualifies for the Regional Center, then it is wise to get connected with them even if you don't need services right now. Once he's a Regional Center client, then he can potentially benefit from their services even through adulthood! If you needed it, it would be a pain to go through the intake process again, and it gets more difficult to qualify the older a child gets.
My son is also on the spectrum, mild to severe. We also get speech, PT, and OT both through our school district and also through our insurance, so I didn't see any real need to pursue the Regional Center.
We finally reached out to them when my son entered high school, and they have been pretty helpful. The main thing that they can provide for us, that we aren't getting elsewhere, is help for respite care. Respite care can include things like special summer camps for autistic kids. This has been a huge help, financially and socially - our son has really benefited from being able to go to camp, and we could not have afforded it otherwise.
I also anticipate them being helpful as we transition from the school district to adulthood. We will need their help in navigating all sorts of things like employment, education, and housing.
But I don't regret not working with the Regional Center earlier. We had other resources that worked for us, and I figure by not taking up their time, we freed those resources up for other families.
You can always go back to the Regional Center later. They are great, they won't hold it against you!
Regional Center is the key to getting services for adults, after they age-out of the school system. I've heard that it's harder to qualify later, so getting it done now is ideal. You can qualify for a MediCal Waiver that lets your child get co-pays covered, and you can sometimes qualify for free respite (including overnight camps). You've already done the hard part doing the assessment and getting qualified, meeting with the case manager is an hour once a year and I'd highly recommend you do it. It is terrible to discuss things in front of the child, I agree, so I try to have another adult (or ABA therapist) there to occupy him. My son is verbal and in general education with supports, but I don't have a crystal ball and I can see how his challenges will make full employment difficult for him - only 12% of people with High Functioning Autism (a loaded term) are fully employed, according to a statistic I've seen. Being a Regional Center client is like insurance for the future - I believe they will actually cover in-home supports so that your adult child can live independently. When I die, as long as Regional Center still exists, there will be someone who is assigned to my son. Do it!
We were in your exact situation a few years ago. We went through with the RCEB assessment, and I’m glad we did. RCEB pays for my son’s social skills camp, for one. And they will attend IEP meetings, etc. if you like. And we may need them for other services in the future.
i explained to the RCEB intake coordinator that we had received a recent diagnosis of ASD from both a developmental pediatrician and the school district. Once I forwarded her those reports, she interviewed my on the phone (without my son present) and then came by for a brief home visit where she didn’t say anything sensitive in front of my son. Giving her those reports made my son’s involvement minimal.
As you mentioned, if the case becomes inactive, you have to start everything again and would probably have to go through the comprehensive RCEB assessment.
One caveat: once you are a RCEB client, the case worker is required to do a brief annual home visit where you sign some forms. Compared to all the other hoops to jump through as a parent of a child on the spectrum, I didn’t consider this too onerous, but I wanted you to know.
I would stick with regional center because it offers life long services. You may not need the services now but you may in the future and it may be hard to get another diagnosis from them another time. My son, now a teen, is a regional center client but we do not currently use any services. The regional center has in the past paid for part of our son's summer camps - namely Quest Camp in the East Bay, which is very good for high functioning ASD kids. It also offers help during the college and adult years. Even if you never use any services, it is a good security backup. It is hard to go through the meetings and assessments though - my poor kids has been through so many, but overall all the various services he has received have been hugely helpful for him. Best of luck to you and your family.
One thing to note is that when you go through Regional Center, they're legally required to have you first access service (OT, speech, ABA, etc.) through your insurance. So whether or not you get Regional Center, chances are you'll have the same providers- those your insurance pays for. Depending on your income, Regional Center can help with copays and deductibles for your insurance. They also provide lots of other support including respite care, diapers over age 5, case management, etc. If you have the chance, YES, add Regional Center to your services; you can always decline if they offer something you don't want, and you can always ask to have meetings when your child isn't in earshot. As for quality, they can be great or mediocre, as can your PPO options, but generally they're pretty good.