Does anyone have any information on this. CCS contacted me yesterday and suggested that I use there services instead of Kaiser services. Does anyone have any experience with CCS that they can share. Thanks.
Yes, I can tell you about it. We have Kaiser for health care, too, and also get CCS services. 1st: Kaiser only gives minimal physical therapy, mostly just rehab from accidents, etc not long term MD PT care. Your son may see a PT a couple of times there ever. CCS is California Children's Services, which is a state benefit based mostly on diagnosis. I believe Kaiser notifies them when children are diagnosed with certain major diagnosis. Your Kaiser hospital should have a CCS Liaison you can call if need be. We actually juggle MDA, Kaiser and CCS. It can be done but with some effort.
Once you're in the CCS system, there are two types of benefits you can get based on your income level: (if your family is low-income) care that is broader including help paying for equipment, or (what we have, for those who don't qualify as low-income) strictly Physical Therapy, Occupational Therapy and yearly assessments. Don't hesitate to use this state benefit, it doesn't restrict you from using your Kaiser benefits and since they specialize in specific children's diagnosis, you may get therapists with lots of DMD experience, which at Oakland Kaiser is rare. We have also had my son's PT give her input at IEP meetings at his elementary school (he's almost 8), been given hand-me down equipment and advice picking out my son's impending scooter.
Also: our physiatrist (also called physical medicine) at Kaiser is Dr Aquilar who is sort of a regional roaming Kaiser doctor. She is fabulous and her region may include Sacramento. She's really an expert and has an excellent bedside manner with adults and kids. She also works with CCS doing assessments.
I hope all this helps. And feel free to contact me with more questions if I omitted anything.
In health and happiness,
Rebecca ( Milo 8w/DMD and Julian, 4, no DMD)