Pooling our wisdom; getting svcs. for SN kids

[LaLaLuna]

OK, mamapie suggested this on another thread and I think it's a great idea plus I'm impatient so I'm stealing her idea and putting it here

I'm new to the world of trying to get the school district to provide services to my son (he has Asperger's and sensory issues) and so far it's been nothin' but frustrating; trying to figure out WHAT it is he needs, WHO I need to call to find out WHERE to go to get it... not to mention stonewalling school psychiatrists, the school district's definition of "special Need" vs. the Dr's and just to make things interesting, the fact that my son attends a fairly new charter school that is pretty slow to initiate contact with the school district at large. Whew!

So... let's share stories, good and bad- and if anyone has suggestions on what to do when you're ready to start or or or let's hear them!

Here's one that might be useful to a few people; esp. if you live in NM
http://www.pbdconline.org/

It's a website for parents of behaviorally different children and an organiztion that can help provide services if you live in NM but they also have a page of links that may be helpful.

[khrisday]

I have been through training at a parent resource center as a parent-advocate, so I have really gained some knowledge in this area. The big problem is that everything varies by area- I personally believe there should be national organizations for advocacy and protection. Woops, let me just answer the O.P.

For me, the best thing that I did was to find a local parent training center and make use of their knowledge and resources. Unfortunately, I don't know of a universal way to go about finding these centers- look in your phone book under disability services in the govt section, or calling Easter Seals are two ways that may yield some results.

The next most helpful thing that I did was to become aware of my rights and familiar with the laws. There were several times that the school was out of compliance with my son's IEP, and I did not hesitate to file a complaint with the board of education. I never saw those people move so fast. When you know your rights, it makes working within the system much easier.

Another thing that was helpful to me was just to network as much as humanly possible. I got on every mailing list that I could, I asked every parent I met what resources they could share. I find out about a lot of programs that way.

Did you know that Scottish Rites Masons have speech and Language Centers where children can get therapy on a sliding scale?

That California-Hawaiian Elks provide in hom speech and occupational therapy to children?

Or that many universities have therapy programs which can serve our kids at limited costs.

Or are you aware that private health insurance companies will allow you to re-nogotiate the terms of your care if you request it?

[LaLaLuna]

Khris- that's an awesome amount of information- thanks! I didn't know any of that stuff! What do you mean by private health insurance companies letting you renegotiate the terms of your care?

Locally, the college has a good program which I am going to get on the waiting list for and a friend of our families works for a federally funded program that helps families find services: now that I'm on break I'm going to call and open a file with them and hopefully they'll be able to step in and help us advocate for our son. We never would have known about his organization, though, if our younger son didn't go to preschool with her son.
You'd think with federal laws in place there'd be a federal framework to make sure that everyone was in compliance with them. :

[khrisday]

What I mean about health insurance companies renogotiating their contracts is that you pay them for a service- they want to keep your business. If your contract with them does not cover a needed service, you can call them (don't just talk to any old schmo though, speak to a supervisor right off) and tell them that your coverage does not include a needed benefit. OK I had to get nasty, and start quoting laws before they offered to do this, but I didn't even know it was possible. They can allow you to decrease another benefit that you probably will not be needing (like the max number of hospital days or something) and add the service that you need.
Who would have thunk? Not me.

[pie]

is it a law about the renegotiation? Our health insurance is provided by dh's union. It is not optional to pay into it. If he wants his job he is charged EXHORBITANT amounts of money (what amounts to over six fifty an hour) for this insurance. So I called about renegotiation and was told no. I requested a supervisor and was told I would have to attend a hearing to be able to take it any further. THE MEETING IS AN HOUR AND HALF AWAY from me. I am going nowhere fast with this.

[LaLaLuna]

I'm by no means an expert on labor law but this seems as though it should be illegal! He HAS to buy this particular insurance to keep his job?! I'd contact the state labor board and see what they have to say.

[pie]

it's in his union contract. He makes the choice to work for the union and part of his monies go into the union trust fund which in turn automatically funds the insurance portion. It also funds vacation and holiday, retirement, etc. Oh and it funds democratic candidates to the point that they DOUBLE OUR DUES a few times a month. It really is total bs.

[Els' 3 Ones]

Hmmmmmmm. Here in IL, my union man can (and does) opt out of the "pac" donation every quarter. I think they cannot make you pay a donation ................... find it hard to believe CA would have law to the contrary.

We have very, very, good insurance. BCBS PPO. I can go to anyone I wish and, if they participate (most do) I get charged less co-pay.

Sad thing is DH cannot leave this union either. Duncan would not be covered anywhere else w/o exhorbinant fees. Even tho he is as healthy as anyone else, no heart probs, etc.

So, at one turn I say I'm grateful for the dx of Down Syndrome because it gets him therapies and at the other turn I'm sad because it loses him health coverage............................

I know I wrote it somewhere before - if you can get a Dr to write a prescription for therapy (sp, pt or ot) because of a known cause, insurance will pay. It's the non-specific DD that is never covered.

And I can't begin to list the diff in Duncan's 1 on 1 speech therapy (me pay) versus the school provided group therapy.................
(which I'm girding my loins to fight in the coming year).

El

[pie]

That makes sense about the prescription. Dr Bob would probably do that since he is the one that inspired me to get off my butt and get some diagnosis going here.

[Momsteader]

My ds #1 was dx Asperger's....

We do lots of private therapy, because we homeschool. We are lucky in that his insurance will pay for private therapy so long as he is not in public school. Although, the last 6 mos, we really haven't been doing much in the way of therapy. He's on a plateau right now, and past performance has shown that nothing we do therapy wise will push him past that until he's ready. So, we respect that....and let him ride!

He's doing lots of swim lessons this summer. Anyone else!? I find they are SOOOO awesome for him in so many ways! The water is just so fun and therapeutic.

Another note on insurance, ours was also hesistant to pay for his therapy until they got a note stating his intelligence was 'normal'. They said that if he was considered developmentally delayed intelligence wise, they would have to refer us to our school or state programs for long term assistance.

<edited for my BAD spelling! LOL>

[khrisday]

Pie,
If you weren't moving I would say go to the meeting, but will you have the same insurance after you move?
Of course if you have no choice but to use their insurance plan, they will not be as willing to negotiate.

Another resource:
United Cerebal Palsy
They deal with kids with all kinds of different disabilities, niot just CP

SSI- if your income is under a certain level, your child could qualify for Social Security Disability payments.

If your child qualifies for SSI, they will also qualify for Medicaid. If your income level is too high, they may still be able to receive a Medicaid Waiver

Ca has a program called In Home Support Services which offers some additional help to both elderly and kids with disabilities.