Answer to Prayer

Sorry in advance if this is a little lengthy in my explanation, but I want to record it all as it is part of our journey. Let me start off with a little background for those of you who haven't had any experience with this. And, I know there are a lot of you that already understand how this all works, so bear with me.

For children with developmental delays or different types of disorders (autism, cerebral palsy), etc. they can receive services from the state of California through the Regional Center. In our area, it is called Alta California Regional Center but different areas have different names for it. To simplify, I will refer to it as Alta. These services include, but are not limited to, physical therapy, occupational therapy, speech therapy, respite care and much more. These services are so wonderful because your child qualifies for them based on his need, not family income level, which is a problem with so many of these agencies.

We were already quite familiar with Alta because Kyler had a significant speech and language delay as well as gross motor delay. For 18 months, he received speech therapy, occupational therapy and music therapy. I can't say enough good things about this program. It took Kyler from an extremely frustrated child who couldn't communicate with us or walk, to age-appropriate in this time frame. Early intervention is SO important. If these things are caught early, children can make up so much ground by the time they are three years old. After that, they can definitely make progress, however, it is usually a little slower and the results not seen as quickly.

That being said, when Caden was discharged from Stanford in March, I immediately put a call in to Alta to get him evaluated so we could start services. After all, in the hospital, he was receiving occupational and feeding therapy. So, I knew for sure that those two things would need to continue and I wanted to get them started as soon as possible. Even so, it took until the beginning of May to really get everything in place and therapy started. Caden started receiving feeding therapy and physical therapy as well as working with a developmental specialist. Both feeding and physical therapies meet once/week and the developmental specialist comes twice/month. All of this made me very happy as it is all provided by the state and doesn't cost me any money, yet gives my son the opportunity to catch up in his delays.

Now enter in California's state budget crisis... Legislators are looking for an easy place to slash budgets and they look at the early intervention program. They decided to cut music therapy entirely which is so sad to me. Kyler thrived in music. Kids in general respond so well to music and it helped his speech and language development progress so much faster. I had hoped that Caden would be able to have music therapy when he got older. In addition to this, the state decided that these services needed to be billed to the patient's insurance instead of being paid for through the state. Then, if the insurance denies payment, then Alta will again cover the cost. Insurance can deny if that type of service isn't covered by the plan.

Now for many people this might not be a problem. However, in our case, this could be a HUGE issue. Caden is about 2/3 of the way of meeting his lifetime maximum for insurance coverage. That means once he hits that limit, he will no longer have insurance benefits. And, with the amount that we have to go to the doctor and with one surgery coming up for sure that is a little scary. And, because he is so high risk for infections, he could end up with a lengthy hospitalization if he gets too sick. That could put us over the top right there and he's not even 9 months old yet! So, the LAST thing we want is to have his weekly therapy sessions going through insurance. It will get us to the cap much faster than we want.

These changes are taking place for each family in the program at the time of their 6-month reviews. As of November 7, Caden will have been in the program for 6 months and that is when they want to start billing insurance. I have tried to be as proactive as possible in this situation so I am not left between a rock and a hard place when the time came. So, I called our insurance plan to talk to them about it, to see if they could provide me with a letter of denial for coverage so Alta would continue covering the costs. Our health plan does not cover speech therapy at all, and feeding therapy falls under that category (it is often speech pathologists who do this) so they said they could easily deny for that. I was thrilled with that news! Then, the developmental specialist is something insurance won't pay for at all, so Alta will continue to cover that as well. Our problem was with the PT.

Our plan doesn't have a cap as to how many sessions of PT you can have, it doesn't have a dollar cap on how much they will pay, and you don't have to have an official diagnosis in order for them to cover it. Under normal circumstances, this would be fantastic. And, in my case it is, since I am in PT twice/week and have been for the past three months and probably will be for another three-four months. But I'm not in danger of reaching my lifetime maximum either. In Caden's case, this is a problem. There is no way they can deny paying for the services.

And, there is another problem... most of the providers that do therapy for children going through Alta aren't set up as venders with insurance companies. They have been receiving their reimbursement from Alta or private pay. And, if we go to a provider who is not in our insurance network, insurance will pay nothing. So, that means we would have to change where Caden receives his PT. I really don't want to do that because we LOVE his therapist! She is amazing, knowledgeable, friendly, and she loves Caden. You develop a rapport with the person working so closely with your child and after 5 months, the last thing you want to do is switch to someone else.

Needless to say I've been stressing about this for awhile. I called our service coordinator at Alta and talked with her at length to see if there was any way we could get around this due to our lifetime maximum problem and she said that there wasn't. So, I was beginning to resign myself to the fact that it was going to go through insurance and we were going to hit the max very soon.

Then, last week I was talking to our nurse case manager that was provided to us through our insurance company. It is a free service that helps families deal with complex medical issues. She has been helping me navigate through many things along this journey of caring for a child with medical needs and calls me once/week to discuss how Caden is doing. She lives in Sacramento also and has two children of her own with medical needs so she knows all the area specialists and all the services that are available. And, she has advocated for us on several occasions to get things in place for Caden when I was having difficulty getting it done. Then she had to go on disability leave for almost three months. In the meantime, we had another case manager working with us. She was very nice and helpful in some ways, but she didn't live locally, pediatrics weren't her specialty and she just didn't advocate for us in the same way. She did help answer questions and did some research for us on a few things which was great. It just wasn't the same as what the other girl had done. So, a couple weeks ago when she came back to work, I was thrilled. She picked up right where we left off and began advocating for us for many things.

I talked to her about my stress and frustration about PT going through insurance and about our respite care ending as of September 30. She asked my permission for her to make a couple phone calls on my behalf and I told her to go for it. That was Tuesday. Wednesday morning, I received a voicemail from our service coordinator at Alta saying that due to our situation with the lifetime maximum, they would be able to make an exception for Caden and cover his services through Alta instead of billing insurance. WOW!!! I practically started bawling right then because this is such a relief for me and such a huge weight off my shoulders. I knew our nurse case manager was the reason behind it so I called her to thank her. She is so sweet and just said she was happy to help. In addition to that, she is working on getting Caden classified as a “status 2” which means he will qualify for Medi-Cal. This is a good thing, so that when he does his his lifetime maximum, he will have another way to cover his therapies. And, it also qualifies him for more respite care; up to 40 hours/week of nursing care for Caden. This is so incredible! In order to qualify, he has to be more than 50% delayed in three or more out of five areas: cognitive, fine motor, gross motor, speech, and self-help. Earlier assessments already told us he is in normal range for cognitive and fine motor. However, we thought he could qualify for gross motor and speech and possibly self-help. So, yesterday, we had a couple people come out and assess him on those two areas. In both cases, he is acting more like a 3-4-month-old as opposed to an 8-month-old. So, he qualifies in those areas. Now they just need to get a report from his PT to make sure he qualifies there and then we're set.

I know this is a lot of detail for many of you; probably more than you cared to have. But it helps me when I look back to see what was going on at the time. Anyway, the events of this week were such an amazing answer to prayer! We are so blessed to have the right people in our lives at the right time. Our 6-month review is scheduled for November 5, so we had just a month left to get this figured out before they started billing insurance and I've been working on it for a couple months already. So, having our nurse case manager come back from disability leave when she did was God's timing.

Thank you all for your continued love and prayers. We continue to need them as Caden's journey isn't over yet. He has many challenges and hurdles ahead, but for now, the burden is less. I will update as things take shape.