Archived Q&A and Reviews
- Physical therapy ending for 3-year-old - options?
- Regional Center or Private OT for 14-month-old?
- Regional Center for 1-year-old's developmental delays?
- See also: Assessment for Developmental Delays
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!
CCS does provide Physical Therapy as does the school district. However, the school district has to justify that the PT your son will be receiving is academically related. CCS comes from a more medical model. CCS and the school District try to play the game that if CCS provides PT then the District can not because it is a ''duplication in services.'' I was told that CCS is a medical model and District is an academic or educational model. The two approaches are different and the goals in which the child would be working on are different. If you have concerns about this, ask your case manager at Regional Center or contact your Protection and Advocacy or CASE (both listed in the phone book or your case manager will have the information). Basically the PT goals with your school district would have to focus on safety within in the classroom environment, mobility and access to educational materials. If your child is not walking...he should definitely be receiving PT services. Talk to your current PT about possible educational goals.
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?
I am a pediatrician, and your post raised a real red flag for me--the fact that your child is losing weight, which might mean a medical problem beyond his developmental delay. I realize your child was evaluated for developmental delay by the RCEB. Was there an evaluation by your pediatrician as to WHY he is developmentally delayed? There are some metabolic disorders (disorders, for example, in your child's ability to excrete certain waste products from the body's digestion/metabolism of certain proteins or sugars) that may be partially treatable, and if left untreated, can make his condition worse. Sometimes, a problem may not be treatable (for example, a loss of part of one chromosome), but may have certain, known characteristics, making it easier for you, your doctors and therapists to help him more effectively. If you haven't done so, I would recommend that your child see a geneticist who is also trained in metabolic disorders as soon as possible. I don't know what your insurance is, but both Kaiser Oakland and Children's Hospital Oakland have excellent genetics departments.
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
Couple of follow up questions: Did you sign the IFSP at the time of Intake? Did you consent to the services and was a start date for services determined? Who did the assessment? Children's Hospital? If it was Children's Hospital....they take FOREVER to get reports to the case managers. If Children's did the assessment and recommended further assessment to address PT/OT issues than your case manager should have requested additional assessment to address that particular area of development...depending upon what the issues are. Some OT/PT issues can be addressed in a developmental infant program while other motor issues need to be addressed specifically by a PT/OT. I could not tell by your posting if your concerns were PT or OT issues. Sounds like a little of both.
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!!
I would appeal the regional center's decision. Sounds like your daughter could use the help. They can be very bureaucratic, so hang in there. mary
I don't have direct experience as a Regional Center client, but in case they don't approve services, be aware that there are also private-practice therapists you could hiredirectly. Even if they just come occasionally, they will give you good ideas and resources for supporting and promoting your daughter's development. If you decide to go that route, post a request for suggestions in the Recommendations Wanted Newsletter. R.K.
My daughter has been a lifelong client of RCEB-She had Down Syndrome and automatically qualifies for services. I say go for the appeal!! I too have heard that when you appeal and have a outside assesment done that documents the 30% delay that you most often will get the service-however-she may be reviewed yearly to see if she still needs service-which is only fair and not a bad thing. It would mean that her delays were lessened by the early intervention!
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
My son was with regional center of the East Bay (RCEB) from 10mths to 3 yrs. He is doing great now. Basically, RCEB pays other agencies to provide services. My advice is to appeal their decision but try to get assistance while you are waiting. RCEB paid for my son to participate in a wonderful program through Childrens Hospital called the Parent Infant Program (PIP). I believe PIP has other grants that fund some of their services and it is possible you would qualify for assistance while you are appealing. You can contact them at 428- 3408. Definitely, let them know that you are appealing RCEB's decision and looking for help while your case is being reviewed. If they can not provide services they may be able to refer you somewhere else. Good luck. Jackie
Hi, You might consider posting your question on the Bay Area Disability Network - it's very similar to BPN but with a focus on disabilities. Lots of parents and there's been some good advice about the Regional Center of the East Bay.
The url is http://badnetwork.org/subscribe.htm
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
The Alameda Regional Center provided excellent services for my daughter and when we moved rather suddenly to Contra Costa County from Alameda I found it very difficult to let go of the help they had provided. The Contra Costa Regional Center, of course, provided the same services - just not the same people, but it was still very good. My daughter was delayed 30% in two areas. I would suggest having your daughter retested by a developmetal doctor if your insurance covers one. Otherwise pay out of pocket, (ouch). There has been a lot of tightening of belts in the last couple of years and you may have to fight harder if you think your child needs services. cindy