California Children's Services - CCS

[admin]

Within the "functional" classification there are also specific range levels, end-range, mid-range, and whatever they call the before mid-range level. After "functional" is "full" classification and under full there is also the end-range, mid-range, etc. So a person without any injury is expected to have "full end-range function". Most of the public agencies are striving for functional mid-range and NOT full end-range as most of us would expect...so imagine that on a spectrum and you can kind of visualize how public agencies classify success.

functional mid-range, functional end-range, full beginning-range, full mid-range, and full end-range (no injury).

I bring this up only because it might be helpful when talking to therapists about goals, to really understand their classification system.

[TNT1999]

Lexi, you might also contact your state PTI (Parent Training and Info. Center). I believe that every state has a PTI. Here's the contact info. from the NICHCY site I posted above. I have found our PTI / PAC (parent advocacy center) to be very helpful. I've previously attended edcuational conferences / workshops that they've had which have really helped in understanding the whole system.

Yes, "functional" sounds like educational. I think the individ. OT has a lot to do with it too though b/c some OTs might be quicker than others to encourage the compensatory strategies as opposed to continuing to try to achieve the bilateral function. Maybe you can do the eval. w/CCS and discuss goals w/o committing to going w/them?? It sounds like your current OT will be helpful to you so that's great. BTW, I don't know if I posted it before, but our early intervention therapists were helpful with making splints, but there were some splints that we had to get through the children's hospital. I don't know how that would work with CCS, but it's another question to raise. If CCS couldn't provide a splint, would you be able to see a private OT to have one made? Just another thing to consider since various splints are so common with our children.

~Tina


Parent Training and Information Center (PTI)
Susan Henderson, Director
Disability Rights Education and Defense Fund, Inc. (DREDF)
2212 6th Street
Berkeley, CA 94710
(510) 644-2555; (800) 348-4232
E-mail: dredf@dredf.org
Web: www.dredf.org

[admin]

In CA the parent resource program is Support for Families. Here's the website...http://www.supportforfamilies.org/partnerships.html. I don't know which area you are in, but you could call the SF office and get the regional contact information. From this site, there looks like there is another group called Family Voices of California. I don't have any experience with Family Voices, but I am currently working with Support for Families to get Brachial Plexus information sheets and support groups listed on their website and in their mailings.

Lisa D

[Nurseem]

My DD started an EI program in Georgia when she was 2 weeks old. At 18 months we moved to California. I didn't know about CCS but found SELPA (Sonoma County) which is an EI for birth to 3 yrs. They recommended CCS, but you have to go to their clinics. EI comes to your home for therapy. Ginny is now in CCS at age 6. We started her after she turned 3. We loved our therapist and only had one car, so we stayed with the EI.

We have no problems with our CCS OT, she is VERY helpful and more open to things then the doctors at Shriner's (a whole other story!!)

I think personality has a lot to do with it. I'm sure if there is a conflict you could change therapists.
Emily

[solson]

I can only go off what our experience was. Our private PT told us months after we started PT with her that our DD would qualify for CCS as BPI is listed as one of their qualifying conditions. I contacted the county CCS office, filled out the application and then spoke with the coordinator. I was then assigned a nurse case manager and referred for therapy to our local CCS medical therapy unit. I did not get to choose our OT and since its based on your location for the most part, you get who you get. EI is a totally different program and at least *we* didnt qualify nor was I interested in it.

She does qualify for services through adulthood with the state though, again, the frequency will be determined through the clinics we have with our OT and specialists.

I should add that we only qualify for the medical therapy program which is not associated with income. It does cover through age 21. Here is the link for the MTU ONLY:
http://www.dhs.ca.gov/pcfh/cms/ccs/mtp.htm

And here is the link for CCS which is primarily for lower income families with servere medical problems:
http://www.dhs.ca.gov/pcfh/cms/ccs/

I would gather that most in CA would qualify for the MTU and their PT/OT programs rather than CCS' programs which cover almost all medical costs related to the injury/disease.

[Nurseem]

You are right. We only qualified for the MTU as well.

[Susie]

Our CCS program only has one OT and one PT. The OT was horrible! The 1st day she pulled my (4 month old) son up to a standing position by pulling him up by his arms (and at the time was very atropy) and he continually got injuries in her care, like huge bumps and bruises. I reported her but no one seemed to care. I thought the PT was great but since she taught my son the 'W' sit we are now having hip issues. Our 1st clinic the doc picked our son up under his arm pits and moved him up and down as my son screamed. I grabbed him out of the docs hands as he debated with me that the nerves couldn't possibly be re-injured by this move...(what could this possibly have told the doc anyway?) After that I refused to see that doc. The next doc (in clinic) was and is very nice but as I asked him questions he finally told me that this injury is not his expertise! I really appreciated him sharing his honesty but why is he doing cinic?????? He actually wrote in a report that our son's movement was fine and that it moved simular to the uneffected arm and our son had zero external rotation and supination at the time.

Soooooo...hopefully CCS isn't like this everywhere???? It is really unfortunate since our son does qualify for free therapy until age 18.

[admin]

Your son was taught the "W" sit by a PT? UGGGH. The CCS program near you sounds awful. They definately aren't all like that and I'm so sorry you don't have that option available to you. Our case manager told us that they might be able to help out with other services as well, besides OT. (We go to private PT and CCS for OT). We had been doing AT, but did that privately so CCS wouldn't cover that for us. I know of other families who do get reimbursed for AT through CCS. (Don't know if they are in the full program or just MTU.) But it might be worth asking your case manager (not the PT/OT or even director). I would think that hippotherapy might be something that would help combat the "W" sit issues and CCS might be able to help out with that.

FYI, our case manager rarely contacts us, and we rarely contact her. However, she did call me one time very apologetic about the lack of attention to our case (from her) and stressed that if there was EVER anything more we felt we might need to contact her and see if there was a way to work with CCS to get the additional services. I haven't needed to take her up on this yet, but I bring this up because it did sound to me like there might be some options there.

[solson]

Ack! Susie, that is exactly what was happening in the hospital with the PT and our private PT. We left as soon as we could! I would freak out when around them because they were doing everything "wrong"!

I cant believe someone taught him the W sit. We work hard with our OT to prevent Ava from sitting that way--we need to build those trunk muscles!

[Nurseem]

Susie-
I am so sorry you have had such a time with CCS. It is nice to know it isn't the same everywhere. Where in CA are you? It is very frustrating when the Doctors don't know what is going on!!