We couldn’t meet with the  Regional Center next Monday like we hoped, but we  now have an appointment for the Friday after next  (the 4th). Actually their first choice was the 14th, and when I was presented that option as a more convenient time for  them, I chose the selfish, self-centered earlier date. Why wouldn’t I? I wanted this done yesterday and I’m not nice right now! Plus this process takes months and then MediCal’s process will take months and I need care for her in June! I have a time crunch, and it doesn’t look hopeful.

All this in hopes of getting a waiver from them for MediCal.  And for you non-Californians, MediCal is Medicare in California–because  California likes to make things virtually unGooglable. Did you mean medical questions, medical dictionary, MEDICAL ENCYCLOPEDIA???

Charley called the business office of Together We Grow, that daycare with the  nurses that would do Laelia’s stretches and therapy. We asked what  the cost out of pocket would be since  we  were denied for MediCal  AND SSI assistance. The lady said it was $30  an hour which would be $750 a week (and since they don’t do part time for kids Laelie’s age it would be even more money). So totally unreasonable. But  that would make Laelia the  ONLY disabled kid unable to get MediCal for this program. 100% of their other kids got it for their disabilities. So what’s the problem? Good question. The problem happens to be that my daughter’s condition is terribly rare… or  terrible and rare. It’s considered solely low incidence by the Regional Center and that’s why they denied us. Even though she is going to miss major developmental milestones, like crawling. And MediCal thinks we can afford this  after looking  at our income since  we make, get this, over $1,400 a month gross! DENIED! Those kids can figure this out on their own! MUAHAHAHAHA–um, that’s their evil maniacal laughter.  

Now,  I realize Medicare and SSI  are falling on hard times, but if being born twisted, stiff and without major muscle in ALL limbs doesn’t mean you get disability or help with special childcare, WHAT WOULD?

We can’t find a childcare facility that would take her. Some would take her but not care for her special needs which is tantamount to child abuse in my opinion.

I don’t know what to do next. We can’t afford $30 an hour for childcare, but I’ll be honest with you, I can’t do all her stretches anymore. It’s killing me slowly. It tortures my instincts and makes me numb. Maybe a stronger mother could do it, but I hate it and the thought of hurting my daughter terrifies me. So quitting my job and moving to cheap, ghetto  town  is not the answer since I would be doing 100% of her awful care. No no no.

Tonight the baby made a big mess and needed a clothes change. I just stared at her for five minutes totally overwhelmed. Sometimes her condition is just too much. Her braces need changed all the time because her feet turn purple. I didn’t do her physical therapy because I got this weird depression where I barely managed to keep the baby fed, clean and changed. Charley comes home to me curled up with my baby just staring into space. She looks thrilled to see her daddy as if she’s receiving stimulation for the first time that day. That’s probably just  the depression talking. I ended up sleeping too much yesterday while baby stared at me. I even slept through a friend’s visit. And all this with three hours of babysitting a day, imagine with none!

If I can’t get help, I don’t know what I’ll do.

2 Responses to “MediCal”

  1. Pat says:

    I picked up your article on my google bulletins about Child Abuse.
    It IS child abuse by the state to deny a child the care she needs.

    First let me say Laelie is a real cutie and I hope some of my suggestions will help.

    My best suggestion is start getting in touch with the media all over California. They will find the story compelling I am sure. I would also go national. There could be other families suffering the same problems around the country.

    I am a displaced Californian who does know about Medical. Getting any help in California is a tough nut to crack no matter what your issue. California is a place unto itself. It’s economy is the 9th largest in the world. I sometimes think California sees itself as a country not a state. I am allowed to say that, I was born there. LOL.

    Also keep applying. Many times these agencies will deny you out of hand. Also there are attorneys who will help you with SSI. They too will deny most applications the first time so keep applying.

    I hope some of this helps. You probably know all this already but I thought I suggest these things anyway.

    I hope it works out your baby is beautiful and deserves to get the care she needs without all the hoop jumping.

  2. Robin Clark says:

    I am so glad that you’ll be going to the Regional Center next Friday. I realize that her condition is low incidence, but from what I know (and I don’t work in EI but we have two EI workers in the Placerville office) that shouldn’t matter one bit. I’m going to ask some pointed questions of our 10 year Alta Veteral EI worker about this, and also why SSI would deny her. It does seem totally unreasonable. I have one young lady on my caseload with Arthrogryposis. However, she also has cognitive disabilities. I am about to ask her parents what they did when she was born. However, since she’s 22, I imagine things were markedly diffferent then.

    Robin Clark
    (my son Brenton is Linda’s friend)

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