I just sent you all a message, but meant to start a discussion. Sorry about that. Here's the text of my message & I'll try to remember to post some info I've put together about the waivers. It appears that our boys DO qualify for the NH-AH waiver. I applied for that & they said Brady does qualify for that, however, there is a waiting list.
Here's the text of my original message:
Hi California families, Any of you have any luck getting your son to qualify for Regional Center? I am so frustrated with not being able to get any assistance!! This really, really irritates me. My neighbors up the street probably make twice what we make, yet they're getting assistance in the form of respite care and who knows what else because their son has fragile-x. While I don't doubt they need the respite, so do we! Here's what a child must have to qualify for regional center: "mental retardation, cerebral palsy, epilepsy, autism, other conditions similar to mental retardation that require treatment similar to that required by individuals with mental retardation." I'm so frustrated!! GRRRR!! When I asked regional center why they don't have to follow the federal law as to what
constitutes a developmental disability (Developmental Disabilities Assistance and Bill of Rights Act 2000), she cited the Lanterman act (http://www.dds.ca.gov/ConsumerCorner/LantermanActGuide.cfm). I'm really at a loss & wondering what your thoughts/experiences are...
:-) Patty

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Replies to This Discussion

Hi Patty,

My son receives services from our local regional center, but only because he's also on the autism spectrum (PDD-NOS). Now that we're approved, he has been able to receive assistance with DME, IEP's, etc.

Sorry I couldn't be of more help.

Thanks,
Christina
Thanks Patty. I hear about this all the time too...it's on my "list" of things I never seem to get to. Hopefully I will one of these days. My CCS is expiring in January but the PT told me to apply for the waiver and if Nicholas was approved then I wouldn't have to go through the approval process every year (she was supposed to have someone call to help me with this but never did...I just remembered that right now). Hope you guys are doing good. Take care and thanks for posting the info.
I remember calling our local regional center on someones suggestion but they said Jon wouldn't qualify because he has no developmental issues. I never even thought about pursuing it. There was a part of me that was glad that I didn't need their services because my son does not have any developmental issues.

Jon turned 18 last March and started receiving his SSI in August. I have read all the medi-cal info that came with it but since Jon is still covered under our insurance I haven't done anything about that yet. I am a little nervous to stir the pot.

How does CCS expire?- Maybe it is because we don't qualify for anything but therapy (PT/OT) no one has ever said anything about it expiring. Just curious.

Not much help, sorry.
Susan
Hi Patty;
I know how you feel; I have tried this every 6months with no avail. Our Reg Cen just keeps giving me the exact same answers that you are getting. I am going to phone them again with this new information and will get back to you as to any results, good or bad. Thanks. Bill
Hi Patty,
I found out that my sons, both with DMD, wouldn't qualify for Regional Center services UNLESS they had a LEARNING DISABILITY as well...a complete, progressive physical disability no longer counted. Neither of my sons have another complication, so no access to services...even as a single parent with TWO sons who had the Dx. I had to be really resourceful to find other back-up. It's been tough, but one son has completed his Master's degree and the other is a website designer. I wish providers would factor in when more than ONE son has the Dx; life is even more complicated when raising 2. Good luck. Laurie
We are in the same boat as Christina.

Micah was first Dx'd with Autism, so we were already involved with RC prior to the DMD Dx. I think we have used Respite twice in 6 years. I just don't trust strangers watching him.
HI Susan: receiving SSi does not negate the insurance that you have for your son. It is money for your son or use to help with his care. It is made out to your son. My son received it starting at 18 and in no way did it impact his medical insurance or his benefits. I would defintiely apply for it.

Susan Rathfelder said:
I remember calling our local regional center on someones suggestion but they said Jon wouldn't qualify because he has no developmental issues. I never even thought about pursuing it. There was a part of me that was glad that I didn't need their services because my son does not have any developmental issues.

Jon turned 18 last March and started receiving his SSI in August. I have read all the medi-cal info that came with it but since Jon is still covered under our insurance I haven't done anything about that yet. I am a little nervous to stir the pot.

How does CCS expire?- Maybe it is because we don't qualify for anything but therapy (PT/OT) no one has ever said anything about it expiring. Just curious.

Not much help, sorry.
Susan
Kim Innabi said:
Hi Susan: We didn't qualify for anything more than PT either, but when Nicholas needed his power wheelchair (it was not covered by our insurance policy), we did qualify based on our income and the cost of the wheelchair. We had to go through a financial screening process and pay a fee for the year (this was for 2009). We won't qualify next year (2010) because there is no big expenditure (has to be 30% of income or more). CCS already sent me the letter stating that as of Jan. 1 we are no longer covered for their services. Our insurance doesn't cover any DME, so we pay for everything out-of-pocket. Luckily (if it can be called luck), Nicholas had a sleep study in April and needed a BiPap machine, so CCS did cover that because it was this year.

Susan Rathfelder said:
I remember calling our local regional center on someones suggestion but they said Jon wouldn't qualify because he has no developmental issues. I never even thought about pursuing it. There was a part of me that was glad that I didn't need their services because my son does not have any developmental issues.

Jon turned 18 last March and started receiving his SSI in August. I have read all the medi-cal info that came with it but since Jon is still covered under our insurance I haven't done anything about that yet. I am a little nervous to stir the pot.

How does CCS expire?- Maybe it is because we don't qualify for anything but therapy (PT/OT) no one has ever said anything about it expiring. Just curious.

Not much help, sorry.
Susan

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