IFSP

On Tuesday, November 10, we had Caden's Individualized Family Service Plan (IFSP) meeting at our house. This is to talk about the services he is receiving through the regional center. In attendance were Caden's nurse case manager who is provided to us through our insurance (I have previously mentioned how awesome she is), our service coordinator at Alta CA Regional Center and her supervisor, a nurse from SCOE (Sacramento County Office of Education), and Caden's infant development specialist.

One of the first things we talked about was the fact that they couldn't make an exception for Caden in terms of not billing our insurance for his therapies. This was something I had posted about a couple months ago how we had a huge answer to prayer that they were going to make an exception since he is in immediate danger of hitting his lifetime maximum with insurance and he is only 10 months old! I was crushed! I had ben counting on this and now I was told it couldn't happen. Actually what they told me is that they would take his case to their Best Practices Committee and have them make a determination. I have to assume they will say “no” or I'm setting myself up for disappointment.

So, as it stands currently, I have 90 days in which to get insurance ready for billing for his therapies. However, it's not quite as simple as that. Caden's PT isn't set up with insurance yet. They are in the process of being added to the network, but it hasn't gone through yet. This is the case with many providers for early intervention services. They didn't have to be on insurance networks before because they were getting reimbursed through Alta. But now everything has changed and they are scrambling to get on provider networks. But the process is taking a long time. So even if I wanted it to go through insurance, we couldn't do that with our current PT. That would mean we would need to change therapists. I do NOT want to do that! We have the most amazing therapist who truly loves and adores Caden AND is an AMAZING PT! I have encountered people from all over who know her through various means and everyone loves her and talks about what a good therapist she is. I do not want to lose her.

The other piece to the puzzle is this: currently there is a loophole in the state law that doesn't affect the Infant Development Programs (IDP). Easter Seals has an IDP and it is kind of an umbrella for overall treatment for kids. We currently have a developmental specialist with Easter Seals who comes out twice/month and works with Caden. Alta is pushing me to move all the therapies to Easter Seals and have them cover everything. I am not anxious to do this because it is likely that the loophole will be closed very soon for the IDP's and then I would be back in the exact same boat I am now.

In addition, Caden has had evaluations for OT and speech therapy and in both cases, it was recommended he start services right away. For OT, his fine motor skills are delayed and he needs extra assistance in getting them to where they should be. In the case of speech, he has more than a 50% delay which is a concern in and of itself. However, when you consider that his left vocal cord was paralyzed during the repair of his heart (it is fully functioning now), and his right vocal cord is permanently damanged from the ventilator tube, he is at significantly higher risk for speech and language delay than the average child.

However, I was told at the IFSP that we could not start either of these services for Caden. They said maybe when he was two years old we could look at speech therapy again. I'm sorry, but that is WAY too late! Kyler started his speech therapy when he was 18 months old and I'm glad it didn't start a day later. And, he didn't have the physical problems to overcome with the vocal cords like Caden does.

The meeting lasted 2 ½ hours when normally it would be about an hour. The way it left off is that I would be receiving a Notice of Action (NOA) denying OT services completely. And, they would request a speech evaluation through Easter Seals. And, the things he is currently receiving (PT, feeding therapy, and developmental specialist) would continue as they are for 90 days. That is the length of time I have to get everything set up through insurance. Once the 90 days are up, they will send me an NOA telling me the services will end. When I receive that notice, it has information on it to submit an appeal. Once I submit the appeal, the services remain in place until a decision has been reached at a hearing.

In the meantime, I did a couple more things this week. I contacted Disability Rights CA and told them Caden was being denied services that he needs. This is an advocacy group that provides pro bono legal work on behalf of children with disabilities. They have assigned me an attorney and as soon as I receive the NOA regarding OT, they will get started on my case.

In addition, I contacted my insurance again. I've talked with them several times already regarding what is covered and what is not. But I made some assumptions on what they knew in regards to the reasons why Caden was receiving therapy. So on the recommendation of a friend who is a pediatric PT, I called again and asked if there was any exclusion in the plan if the therapy was for developmental delay as opposed to an injury, etc. To my relief, there is a difference!!! Our plan does not cover any treatment that is for development delays. I got the health plan handbook and emailed the page indicating this to our service coordinator and asked if this was a sufficient form of “denial” from insurance. I have yet to get an official reply back. She said it looked optimistic, but couldn't tell me for sure until it went through her supervisor. I told her I wanted an answer in writing. That way I have the documentation if I need it later.

So, here we are... still unsure of what is going to happen. But if this page from the handbook is sufficient it should solve the problem of our current therapies. We should be able to keep those in place. I'm not entirely sure what will happen with the OT and speech therapies. But believe me, I am willing to fight as much as I need to in order to get Caden the services he needs to grow and thrive. He has been through too much and I am not about to give up now. I know God has a plan and I'm just not sure what it is right now. I keep praying for answers for a clear path to take. So far things keep getting harder and I know Satan is attacking us. I will continue to stand strong for my family and I know God is right there with me because I know he has plans for Caden. Thank you for your prayers about this subject. It has added so much stress in my life and I just want to be able to get it resolved and know that Caden is getting everything he needs.


Pictures of Caden at 10 months old - November 9