Home of the Four Trans

This post is about Justin’s therapy services.

Justin has started at a new therapy unit closer to our house this week. He’ll be receiving 30 minute sessions of each occupational and physical therapy, 3 times a week. This therapy we’re receiving is through California Children’s Services (CCS), a government funded program, which means we don’t have to pay a cent out of pocket (unless you count the taxes that are pulled from Loi’s pay check every month, and the taxes that we have to pay at the end of the year).

Justin is eligible for these services until he is 21 years of age, since he has a chronic heart condition, suffered a stroke, and had multiple surgeries (hence extensive hospital stays) that put him at risk for developmental delays. The occupational and physical therapy provided by CCS are available to Justin so that he can take advantage of the services that will allow him to grow into an independent human being, self reliant.

Sounds great, right? No money out of pocket, “free” services, achieving independence. Well, there’s a catch. These services provided by CCS have strict guidelines about the goals they can set for Justin.

Here’s what I have issue with:

First, a little bit about Justin’s medical history. Justin is developmentally delayed, overall, compared to other children his age group. The main reason for this is he suffered a stroke that affected the left side of his brain, that controls the right side of his body. Because of the impairment of the signals that are sent to that area of the brain and back, he does not have full awareness of his right arm, hand, or leg. He is limited in how and if he can move those areas of the body. Most of time, he neglects to use his right side because he has learned to compensate by using only the left side of his body.

In addition, the evaluations done by a CCS occupational therapist show that he has lost sensation in certain areas of his arm, which makes it difficult for him to even register that he has that other arm to use; he cannot even feel certain parts of his arm. The evaluations done by both CCS occupational and physical therapist also show that his leg is weak; he does bear or shift weight on his right leg.

Because he cannot or does not use the right side of his body, he is delayed in achieving the appropriate gross and fine motor skills other children his age can do (i.e.; walk, crawl, bilateral work).

My problem is this: CCS guidelines for setting goals are based on achieving self care, even if it means just using one side of his body. The entire reason we started therapy was to improve the right side that was affected, help him regain the function and awareness. Along the way, we were hoping to develop his gross and fine motor skills, as well. But, because their goals do not address his right side at all (I mean, at all! I’ve read the evaluations, and discussed it with his therapists numerous times), the therapists can quantify that’s he’s passed a goal even if he’s not using the right side to assist with a task (eating, undressing, getting up or down).

I recently learned from the new occupational therapist that CCS guidelines does not allow them to set “sensory integration goals”. I had asked if she could do more sensory exercises with Justin since the latest assessment does show that he has sensory loss in his arm. She told me that she had the tools such as vibrating toys and a swing that they could use, but she is not allowed to write sensory integration goals. And, they would not work on sensory activities unless it affects Justin being able to reach the self-care goals.

I had been with the other CCS therapy unit for 6 months, and time after time, I had requested that they work on his sensory, helping him rebuild his right side awareness because I did not understand how he could pass his goals if he did not. They assured me from the first time that I raised issue with this that through weight bearing, splint wearing, and constant hand over hand assisting would help him become more aware of his right side. Everything they said was true based on my talking with other therapists and his neurologist.

However, I also know that gaining sensation, the ability to feel, back to the body is another task in itself. And, it is important that he does. Relearning hand function is also another feat in itself, and requires special attention and techniques. At CHOC, there is a hand specialist.

My biggest issue is that this strategy of setting goals will not allow Justin to grow to his full potential. He is not given enough opportunity to build his right side of the body.

So, what am I going to do about it? As I always do, continue asking questions and learning.

I may sound like a broken record, sometimes, but I continue to ask the same questions over and over. As I do, I learn something new, every time that leads me somewhere to find/provide better care for Justin.

For example, I address Justin’s sensation and bilateral work concerns with his infant stimulation teacher (whom he meets with once a week). She offered me information on the brushing technique, to improve sensation and circulation.  She showed him how to play with playdough, paper, and other toys that would encourage him to use his right hand. Since then, he’s learned how to voluntarily open and release his right hand, though not consistently.

I’ve asked his therapists to show me different stretches to work with him to improve the tone in his arm and leg. I ask him how and why those stretches and excerices work to make sure I understand why I do the things I do for him.

Even if the standards and guidelines may prevent them from addressing his right side, I still ask his therapists of the different techinques I can use to improve his hand and leg function, so that I can do it with Justin at home.

What I  really want to do is to return to CHOC for his occupational therapy services to gain new ideas and techniques on improving sensation and function on his right side, and to improve his ability to work bilaterally with his hands.

Our insurance only covers a limited number of therapy sessions per year for Justin. Each 50 minute therapy session at CHOC ranges from $500-$700. Regional Center of Orange County (RCOC), another government funded program, will not take on Justin’s case for physcial/occupational therapy, although CHOC is one of their therapy units. The case manager at RCOC said that Justin is more of a CCS candidate because he has the stroke history (but, he has the heart history, too!!!). I’m thinking I could appeal this, but I’m wondering if I should since Justin could only receive services from them until 3 years of age, anyway. Is it worth the trouble?

The other concern with putting Justin through more therapy is it takes away from his normal life. It is not just the time that he is in therapy, but I must also account for the time that he’s strapped in the carseat while I’m driving, there and back. He spends much of his day in a high chair eating, also. Then, there’s the doctor’s appointments with his 8 specialists, pacemaker check once a month… So, I have to find time for him to be just a regular, little kid.

Where’s the balance?

OK, where am I going with this? I am peeved about the CCS guidelines, as they have not always been this way (budget cuts?). Not only that, but at the fact that I’m fending for myself and my kid. The services are free (sort of. We pay taxes!); Either, I take it or leave.

My kid has been through a lot, continues to go through a lot, we pay taxes (lots of it), I work with my kid on the techniques at home, I have to find ways to get my kid in the system because our income doesn’t qualify enough for various government programs. We don’t make enough (correction: we are not bajillionaires) to pay everything out of pocket. We are limited with what our insurance covers.

So, where does this leave us (me)? Frustrated and tired. I just want to freakin’ love my baby, and not have to fight all the time.

I’m sorry to sound like I’m complaining. But, this is a sad fact with raising a child with special needs in this country, if you’re middle class. Having Justin is the only reason why I’d ever want to be a Bajillionaire (and, nope, I don’t think being a millionaire is enough). This is only a glimpse of the financial burden that we carry for Justin’s medical care. To have the best of the best of the best care for my kid, I need to be a Bajillionaire.

Here’s where I won’t complain: I wouldn’t trade my Justin for anything in this world. Period.

Now, any advice/experiences that you’d like to share? I certainly need it.

This entry was posted on Thursday, March 12th, 2009 at 11:55 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.