Fighting...

I have gotten a little discouraged lately because I have been fighting some battles on Caden's behalf and have felt like I've been getting nowhere. There were days when it felt like nothing was going our way. It is so easy to give up in defeat. But then I would look at Caden's sweet smile and know that I had to keep going. It is for his benefit. God is good though and things happen in His time, not mine!

So, finally, we received some really great news! First of all, I know I have mentioned that we have been trying to get insurance authorization for Caden to have intensive feeding therapy through Clinic 4 Kidz. They have a 96% and higher success rate of getting kids off g-tubes and eating orally. It is a higher percentage the younger the child (they work with kids up to 12 years old). So we are anxious to get Caden going. There is an 8-month waiting list and we have been on it for 4 months. Our time should come up at the end of August. But in the meantime, we have spent the last 4 months going in circles with insurance and doctors trying to get authorization for them to pay for this program as it is extremely expensive!

For a long time they were saying they couldn't see any reason why they wouldn't pay for it. However, after doing a courtesy review, they submitted an official letter of denial saying it wasn't medically necessary. :( I was so frustrated! So, I talked to Caden's GI doctor's office again because they are the ones who made the referral. The dietitian at that office was finally able to make contact with the medical director at Blue Shield and convince them that this is medically necessary. They approved 4 weeks of services! That is FANTASTIC news! Unfortunately there are a few complications with that as well. If you'll remember I just said we aren't supposed to start until the end of August. That is more than 4 weeks away... The 4 weeks will be up on May 26. So at this point, we are hoping we can get the evaluation done in that time frame and then hopefully they will authorize the actual therapy services again when those start at the end of August. I can't even tell you how many times I've gone in circles talking to different people. It's exhausting! But, I am absolutely THRILLED to be at this point. I know God is working for good and things happen in HIS timeframe, not mine. But I tend to get a little impatient.

On another front, we have been receiving respite care services. For those who aren't familiar with this, it is childcare provided through UCP Family Respite Services. UCP stands for United Cerebral Palsy. They provide free childcare for children who qualify. It is paid for through Alta California Regional Center who also pays for all of Caden's therapies. Anyway, I talked to our service coordinator at the regional center a few weeks ago and she informed me that because we now have nursing care for Caden, we are no longer allowed to have respite care. She said it was her mistake that we have had both for the last couple months. I was really disappointed because the two things serve different purposes and I didn't want to lose the respite but at the time I didn't think I had a choice.

Then I started talking to people. Other families who have been through this with their kids. They encouraged me to fight. They said I needed to ask for a copy of the policy or law that says we can't have both. And, if they still continued to say that I can't have both, that I need to request a Notice of Action because I needed to take that to Disability Rights California. They provide pro bono legal help for families with kids with disabilities. I was in touch with them last fall when the regional center was denying OT and speech therapies. As soon as the regional center found out I'd been working with Disability Rights California, we were authorized for Caden's therapies two days later. Funny how that works!

In addition to talking to other families, I called the Warmline Family Resource Center. They also provide answers to questions regarding to the services offered by the regional center. They are very well versed in the Trailer Bill language which outlines services offered by the state of CA. When I told them I was being told that I couldn't have both nursing and respite care they said absolutely not! They told me the two things were completely separate. First of all, funding for the nursing care comes from Medi-Cal and the funding for the respite comes from the regional center. So since the money doesn't come out of the same “pot”, they said it shouldn't matter if we had both. In addition, they said the two things serve completely different purposes which is exactly what I said. So they said the same thing as the other people I had talked to. They said to ask for a copy of the policy that says I can't have both and ask them what changed in the Trailer Bill language which would preclude us from having both. So, after talking to them, I was set to FIGHT!

Let me give you a little background on how we use the two services and how they are different. Nursing care helps us keep Caden home and away from germs. It allows me to cook, clean, do laundry, etc. and know that Caden is being cared for. I am able to take Kyler to/from preschool without taking Caden and exposing him to all the germy 3 & 4 year olds. And, because I never have enough time in the day to do all the homework from Caden's therapy sessions, the nurse is able to devote her time to doing that. So in short, nursing care allows me to continue to run my household and still have Caden have all the therapy he needs. But don't get me wrong, I still have to drive Caden to/from all his therapy and doctor appointments and participate in the sessions as well. I am very involved with his daily care, it just takes a lot of the stress out of it.

Now respite care is different. UCP will watch siblings as well (nursing care only watches Caden). So, this allows me to get out in the evening, it allows Greg & I to go on a date. It allows Greg & I to take Kyler out and do something special with him. It is what gives us a true break! This is something nursing does not do.

So, I contacted our service coordinator and told her I wanted a copy of the policy and a Notice of Action because I was pursuing this. I received an email back from her telling me that they were allowing me to keep my services while they “clarified” the language on the Trailer Bill. Respite hours are provided by quarter and we have 90 hours/quarter that we can use as we choose. So, at this point, we have won another battle. But I have since heard from our service coordinator and she is still trying to take the respite away from us but it will be after this quarter. We will see. I'm not done fighting yet!