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Our son has been receiving PT through the Regional Center but will be 3 in a couple weeks. CCS has been recommended to us but he may not qualify. I am really worried about what a diagnosis that would qualify for CCS (like CP) would do to his insurability. We currently buy our own health insurance and I am afraid he might be refused if later we need to change. I have also heard that if the kid goes to CCS then the school district will not help him. We are pushing to get him PT through the school district but don't know if we can get it under the ''educational'' needs category. Does anyone have any experience with any of this red tape? Need help navigating the systems!
I am not sure if the CCS eligibility rules change once a child becomes three years old but you might want to inquire. Good luck anonymous
Help! My (now) 14 months old son was referred to RCEB in December, and was evaluated in early January. We were assinged a Physical Therapist mid-February, based on the report of the gross motor-skills assessor, but I can even get the REPORT of the overall assesor, let alone a written IFSP, or even a time frame when I can expect the recommended OT and interventional specialist to get back to me. Our case worker keeps telling me to call him after the end of the month (he said this in January, and then again in February) as he is so busy, and they have limited resources, and he still doesn't have the report form the overall assessor. I'm desperate, and lost...I thought I was supposed to get a written IFSP within 45 days of referral? My husband and I will pay anything to get our son the help he needs, but we can't even find any private OTs that return our phone calls. I see the months roll by, and my son is falling farther and farther behind his peers, his weight is dropping (is it due to his inability to control his mouth muscles? We don't know!) and I don't know what to do. Can anyone help? Does the regional center for San Francisco or Marin have better results?
As for working with the RCEB, you're kind of stuck as the Regional Centers work on a geographic basis (i.e. based on your residence). However, be pushy. You can also contact a group of lawyers, called ''Protection and Advocacy'' whose job is to provide low cost legal advice/council to the developmentally delayed in California. They may be able to help get you more timely help from the RCEB.
Good luck and please get a genetics evaluation for him soon! madelyn
If you have concerns about the lack of resources and your case manager not getting back to you, I would call the case managers supervisor. Secondly, if your case manager is telling you that there are no resources....technically they can not do that as they are not supposed to have waiting lists. Some parents are willing to wait. Unfortunately Regional Center can not control the number of children coming into their system and they are constantly doing out reach for more vendors. If you know of a pediatric OT/PT that can provide services for your son that is not a vendor with RCEB than I would request that RCEB reimburse you for services. It has been done before. It will only be done if RCEB has exhausted all their resources.
Unfortunately, since I do not know specifically what your son's motor issues are (gross motor/fine motor/feeding) it is difficult to recommend a therapist. Some vendors only serve contra costa county but I am assunming you are in Alameda County. If feeding is an issue, Marjorie Meyer Palmer is very popular in the Bay Area. She works out of Fremont. She does not do home visits. She travels a lot for her work...but almost every child I know who's seen her loves her.
With regards to the IFSP. You have the right to have a copy of it. Ask the case manager again...if no response, contact his supervisor.
Sorry to hear that you are having difficulties with RCEB. Anonymous
Our one-year-old daughter has some documented developmental delays due to maternal medication exposure--nothing dreadful, but still fairly apparent. A pediatric occupational therapist tested her at 7 months and found some pretty significant stuff, but by the time we could get the educational rights and get the Regional Center assessment, she had improved (as predicted by age 2 or so) to the point where they decided she is 25% delayed, and their services start at 30% delay.
I want to do what is best for her, and tend to think professional help from Regional Centers would be better than my uneducated attempts to help her overcome this--she's obviously bright, but seems frustrated in some areas beyond the norm for her age, and is very inconsistent in others (e.g., she was cruising before she could get to a sitting position, and won't use her hands to clap or play peekaboo). I also don't want to make her out to be a lot worse off than she is. Someone from our fost/adopt agency has recommended we appeal the Regional Center assessment, especially because it could make a significant financial difference for us when we actually adopt, in a few months.
What has been your experience with Regional Center, particularly the East Bay one? Have their services made a big difference for your child? Does anyone have experience with these appeals? We've been told appealing is usually successful--is that your experience? Any other thoughts? Thank you!!
From 6month to 3 years my daughter attended a awesome Infant developement program ran thru Oaklands Childrens Hosp. It cost $1,200 month and no way could we have been able to swing that! The intense speech,OT,PT and support made my daughter the great girl she is today! Go for it and good luck! Mom of RCEB client
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As for the RCEB - appeals are often successful and worth doing. The level of service/support you ultimately get varies depending on the counselor. As a generalization, any support that you can get - and as early as you can get it can make a significant difference.
You might also want to speak to someone at DREDF (Disability Rights Education and defense fund). They have some very good parent advocates that can advise you on what services your child is entitled to - here's their website http://www.dredf.org/parent/parent.shtml Good luck, Eric
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