Parents of Disabled Children - Coordinating care/benefits/trusts/wills

[baltimoreharps]

Quote:
Be very careful when you ask me that! I can and will talk your ear off.

Seriously, we have gone through it allincluding finding the autism dx so if I can, I'm glad to help. Kids, especially with Asperger's are SO hard to understand for NT people. I highly recommending getting your hands on some Temple Grandin books if you would like to learn more about Aspergers. She writes the way my son talks and it is eye opening to how Aspie people think.
We are very blessed to have family that understands why he is and how he is. Meeting new people is a challenge, but not as much as it was when he was younger. Now he just finds others that share his interests and makes friends, mainly over the computer for some of his more out there interests like playing the ocarina. Locally, he has made wonderful friends through Ham Radio and attends meetings. His best friend here is a 70 year old gentleman who has polio and can only use his pinky toe for phone, computer, and mobility. He is amazing.

Now when he was 14...hooo boy, that was a rough time!

 

[welsummerchicks]

Oh I'm an old Tempel fan and have been around autistic and aspie kids for about 40 yrs. My worst current problem is understanding the benefits, programs, who-gets-what-from-where. If I can get a handle on it, I'll know what courses to put into this degree.

But you can talk about your son as much as you like, I certainly won't stop you!!!

 

[KristyHall]

OK I do not have children. I have volunteered a little with disabled children and I know its not the same but I have to say this, I admire you all for your dedication to your children. It must be very difficult at times when dealing with the children's limitations as well as the system.

My hats off to you.

 

[baltimoreharps]

Quote:
That's fantastic that you already know.

Most of the time, I get a response of " what's that?" and have to go from the beginning about what Asperger's is.

With the programs in NC it really depends on what your income levels are and what insurance. For us, we are low income but are comfortable. )I'd be more comfy if we could be more self sufficent but oh well, see sig line) The kids are all on either NC Health Choice which is a branch of BCBS or in the oldests case, Medicaide. If they need mental health care, they are referred to PBH which is the main healthcare for the tri state area and they find a provider for them. That's the standard way.

The way that helped us out to finding a fantastic pschycologist(sp, I know, tired, lol) was after ds had a meltdown at 14. He had to go for treatment for about a month and in the meantime, we were finding someine other than the provider who he was assigned to because he was all about meds, not real therapy. Since we were rural, the local sherriff's office gave us a number for juvinile referrals and questions for treatment and after care. We called, a very nice lady gave us the number of the therpaist that we go to to this day. There was no other way to get this therapist. There was no listing for them in the PBH manual, just on a need to know and urgent situational case by case basis. He has been better with this team of 2 therapists who know how to call him on his manipulations and while it hasn't been pretty at times, he is better for it.

None of that would have been volunteered by PBH, just like luvsgoldens with expenses. They do make you work for it, but most of the time, it is worth it.

 

[newfoundland]

I don't live in USA but have worked with children with disabilities for many year. I find one of the best sources for information on entitlements for assistance are the societies that are specifically set up for your child's particular association, for example, the Deaf Blind Association etc. These people often have a wealth of information and experience. Best wishes!

 

[welsummerchicks]

Well there always is more to learn about aspergers and autism with new research, and some of the earlier studies have been discarded due to errors in methods. changing the situation even more. So I always feel like I'm learning.

I had to learn the hard way, that medication can help some kids, especially those on the more severe side of the spectrum.

I also had to learn the hard way, that not all health care providers really understand what the medicines they prescribe, what the medications actually do. I far, far prefer an expert in the medications be in charge, it's pretty amazing how cautious those folks are.

Often I hear explanations of 'oh we're giving this medicine because it does blah blah blah', and I'm like, look, I've studied the chemistry, metabolism and neurological action of most of these drugs in incredible detail for decades, and THAT MEDICINE DOESN'T DO THAT. So very often I don't see the logic. Each medication is different and has a different effect. They aren't 'Doctor Oz's Magic Elixer' that treat 'whatever ails ya'.

I hope more folks reply with their experiences getting benefits, health insurance and care.

One thing that hasn't been mentioned is respite care - do you have difficulty getting that?