United Brachial Plexus Network, Inc.

I thought I had seen a few posts recently where people mentioned that they had had bad experiences with CCS. I just met with my local office yesterday and they seemed great. I'm hoping those with bad experiences might share why before I committ to this service. Was it because of your local office or is there some bigger problem with the system that I shoulld know about? I have insurance and can continue with the hospital therapist for my son, Jason (lobpi, 11 months), but it is a 45 minute drive one-way and it's starting to wear us out. If you would prefer to email me directly, that would be fine and I'd be thrilled to hear from you. Thanks.

Lexi
lexipward@hotmail.com

Hi, Lexi. I don't live anywhere near CA, but just wanted to mention that the therapy that you receive from an early intervention (EI) type of program is different than that which you receive from a hospital-based program. Is one better than the other? Well, a lot of that depends on the particular therapist that you get and what your needs are. You see, the therapies are different. EI therapy svcs are based on a developmental / educational model and help the child do things that will help them to perform basic daily life skills. Hospital-based / private therapy svcs are a medical model and they focus on trying to "fix/cure" the injury. An example is that there are many things that people typically do two-handed and an EI therapist might focus more on ways to get the task accomplished, even if that means doing it one-handed rather than the typical two-handed way. At this age, though, even EI therapists should be trying to encourage bilateral usage. A goal for an EI therapist might be to pull down the pants; a goal for a private therapist might be to be able to grasp (ex. a pants waistline) with both hands. Personally I think that both types of therapy are helpful. Of course, the EI therapy is much more convenient. Is there a reason you can't do both therapies? When Nicole was a baby, we initially just had EI, but eventually added hospital therapy too. The way it worked here is that the EI therapists billed our insurance co. and got reimbursed by them, but it didn't go against our benefits (so if we had 50 visits / year, we still had those 50 visits available to us). We didn't have to pay a co-pay with EI and there was no charge for any of the svcs. Then, when we were still w/EI and added private therapy, the private therapy went through the insurance just as it normally would have even if we didn't have EI. I do know though that this varies by state and that even in our state, EI has changed significantly. I know that now there are income and / or insurance requirements first and parents have to pay out quite a bit for EI svcs (which is quite sad b/c it was such a wonderful svc for us!). I think now the only people who would prob. use EI in our state is people with no insurance b/c the EI payout is much more than a typical insurance co-pay costs.

Anyway, just make sure you understand exactly how it works, how much it costs, if anything, how the insurance benefits factor in, and if maybe you could do a combination of EI and private therapy (but reducing your trips to the hospital). I think a combination of svcs. is the most ideal. Perhaps PT from one and OT from the other or PT and OT from EI and add the one you need most from the hospital a couple times a month. Hopefully, someone w/CCS will reply as well, but I just wanted to give you this info.

BTW, we had an EI OT at one point that was lazy and not very good at all. She just basically brought her toys over and let Nicole play w/them however she chose (not quite that bad, but close to it). Anyway, I spoke up to our svc coordinator and got a new therapist. There will always be some therapist who are better than others and you can always change therapists, whether they're through EI or a hospital. It can be awkward, but it's well worth it in the end. When we changed EI therapists, we got a great new PT/OT team. Hope this helps.

~Tina, bpmom@comcast.net Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI)

We had a very bad experience with using CCS but we live in a rural area and only have a one OT and one PT and in my opinion they weren't that good; even the doctors with CCS didn't know much about BPI. I believe in some of the larger towns you get more options. Also, if the child is functional then they will no longer give scipts for therapy even though the child is compensating. It is probably possible to get a good therapist with in CCS but I would recommend that you interview the therapists for their actual experiences in this injury.

One of the problems we had is that I didn't know much about the injury either and thought that I could trust them and that was a BIG mistake!

Hi there,
We enrolled our daughter in CCS when she was about 8 months old. I have been very happy with the services. We have an awesome OT who is very familiar with the injury and has worked with other children. She does her research and has tried a variety of things. We were initally going to private therapy and I was never nearly as happy there.

I'm not sure what Susie's entire experience was but I know for our daughter she is very functional but continues to receive therapy once per week. Once you are "in the system" they will receive therapy through age 21 (18?) though the frequency may decrease as they improve. I have also liked the "clinics" they hold on occasion which has the OT, therapy director and for us an orthopedic surgeon involved. We are able to discuss the therapy, reset goals, and the specific orthopedist who comes to our clinic was actually our private orthopedist prior. I have found the times very helpful and we have been referred to other services through that clinic as well.

No doubt it depends upon what therapy unit you are seen at and who you are given as an OT/PT for your level of satisfaction. For the price I pay (free) and the fact that she is GUARANTEED therapy through adulthood, I felt it was worth getting into the system.

In addition, I can still see a private therapist for services tehy dont offer for my DD--aquatherapy, neurology, etc. Its really just the OT that I am committing to not duplicating services through a private provider.

Sara, I'm surprised that your daughter still receives svcs, regardless of her level of function. You should prob. try to stay w/the therapist(s) you have b/c this isn't typically the case with EI therapists. It's usually pretty straight forward for a young baby w/a BPI to qualify, but usually at least annually they must have evals and be developmentally delayed. Also, I'm not sure where you received the info. about coverage through age 21/18 and you might want to double check that. In most states, the first EI program covers from birth until the 3rd birthday. At that point, another program (in many cases the local school system or an age 3-5 program) take over therapy (if the child still qualifies -- and they're usually tougher on requirements. The school also has annual meetings and then a more thorough tri-ennial, which is prob. when they try to discontinue svcs for most children.

Realistically, it doesn't make sense that any state would provide therapy until adulthood with no further qualifications b/c most children would not need EI svcs well before that point. Our daughter has a severe injury and was always borderline for just getting svcs and sometimes they really had to justify the svcs by "qualifying" her achievements -- how she had to compensate to complete them and how long they took, etc. Also, I can't imagine how any state could afford to provide these svcs. through the years w/no further qualifications.

I don't recall how old your daughter is, but you really should check around before she turns 3 so that you're prepared for the transition if there is one. I hope I don't offend you -- I don't mean to and apologize if I did, I just want you to be prepared and not caught by surprise. Often w/this injury we're uninformed and / or misinformed.


Here's some info. that might be helpful:

http://www.nichcy.org/stateshe/ca.htm

Programs for Infants and Toddlers with Disabilities: Ages Birth through 2
Rick Ingraham, Part C Coordinator
Children and Family Services Branch
Department of Developmental Services
1600 9th Street, Room 330, MS 3-8
Sacramento, CA 95814
(916) 654-2773; (800) 515-2229
E-mail: ringraha@dds.ca.gov
Web: www.dds.ca.gov/EarlyStart/EShome.cfm

Programs for Children with Disabilities: Ages 3 through 5
Chris Drouin, Interagency Liaison
Special Education Division
Administrative Services Unit
Department of Education
1430 N Street, Suite 530
Sacramento, CA 95814
(916) 327-3547
Web: www.cde.ca.gov/sp/se/


~Tina, bpmom@comcast.net, Mom to Nicole (6 y.o. w/LBPI) & Joshua (1 y.o. w/NOBPI)

Hi Lexi,

I emailed you too - but wanted to add that CCS is a California program that provides therapy from birth to age 18. It is not an early intervention program. We too got Alyssa in the system at 5-6 months of age and she has been seeing a therapist ever since. The frequency of seeing the therapist is determined by the doctor as well as CCS. When Alyssa plateaued, we only saw them every quarter for a review. Now that we have had her recent surgery, we will be seeing her therapist 2 times a week. Hope this is helpful!

Jody

If the CCS program is from birth to age 18, then I don't understand why CA also has early intervention programs. Who would do EI if they could just do CCS? I'm also curious if anyone knows how something like this is funded. We can't even afford a good birth to three program anymore in our state and couldn't imagine a program providing therapy until age 18. Do all the CCS therapists go to your home? Can you choose whatever therapist you want? Is it free for everyone? Is it for just educational model therapy or does it include medical model therapy? I'm sorry for all the questions, I'm just really curious b/c I've just never heard of a state offering anything like this. Maybe I'm living in the wrong state! Thanks.

~Tina, bpmom@comcast.net

P.S. Sorry all for the confusion, I assumed by the description of the program in the original post that it was an early interventin program, which I guess it isn't. I based my replies on that incorrect assumption. Sounds like a great program to me!!

~Tina

Okay, I'm in California and it's fuzzy to me! I think it all has to do with the funding sources and their goals, as well as the various government departments that they're affiliated with. In California, the Early Start Program is the 0-3 Early Intervention Program. It is affiliated with the Department of Developmental Services, Prevention and Childrens Services Branch in Collaboration with the Department of Education;Education Equity, Access and Support Branch; Special Education Devision (YOWZA, what a mouthful!)

CCS is with the Department of Public Health and covers certain medical conditions up to the age of 21. "In general, CCS covers medical conditions that are physically disabling or require medical, surgical, or rehabilitative services".


here's the link to CCS.
http://www.dhs.ca.gov/pcfh/cms/ccs/mtp.htm

WOW! Thank you all so much for all the very helpful information.

Tina, thanks for your description of the difference between the agency OT and the "private" OT. It sounds like that is the case here too. The therapist, who did seem great, did mention a few times that they focus on "functional." I'm the kind of person who listens to everything, then later realizes I have questions (of course when I am no longer in the situation.), and that was one of the questions. Luckily, our current OT who has worked with Jason since he was 2 weeks old, used to work at this same office of CCS, so I will discuss it with her. If she really thinks we should stay with her, I probably will. The drive won't kill me, especially if it is better for Jason. Unfortunately, it is my understanding that we can’t do both, but I’ll check into that too, although I think Sara said in her post that we can’t duplicate services.

Also, I can't figure out all the services/agencies here in CA. We were first referred to an agency called Inland Regional Center, which he didn't qualify for from just a phone interview and actually I'm not even sure why. They referred us to Early Start Infant Circle Program, where 2 special Ed teachers and a PT came to our house for an evaluation. They beamed when they said they were actually very happy that he didn't qualify for their program, meaning that he is doing well cognitively (I was, of course, happy as well). They referred us to CCS. The OT says she would see Jason twice a week, which is what we are doing now.

Also, Tina, our office is very small with just a PT (who supervises the whole office), an OT and some kind of OT or PT assistant (I didn’t meet her), so I won’t be able to choose a therapist. Luckily, both the OT and PT seemed really great…gentle, friendly, knowledgeable, etc., so hopefully it will work out, but that “functional” thing is bothering me. I’ll let you know when I decide. I think it will take a couple of weeks for them to do paperwork, etc., which is probably another downside to public services.

Thanks again to everyone for your help.