While I'm on the subject of support let me just say this

[Guest guest]

Perhaps this is an appropriate forum to address a few issues:

There is in every state a " Traumatic Brain Injury Association " which is funded

in part by federal funds. I managed to do a little research on-line on the

subject, and discovered that the funding amounts to about $1.60 per TBI victim.

If this figure bothers you, consider writing to your Senators and Congressman.

Personally, for the current $1.60 funding, I would rather just get a coupon to

Starbucks or & Noble for a chai latte, as it would be more productive.

The TBI association in my state, Minnesota, has decided to focus on seat belt

safety because " there is no treatment for TBI. " Excuse me if I am disgusted with

them, but their attitude has me seeing red.

In Minnesota, TBI victims whose income qualifies them to live under a bridge, or

about $500 a month, can receive a " TBI waiver " in which case they qualify for a

certain amount of assistance from the TBI association.

My SSDI thankfully, I must say, is above that amount, so I will never under

their current definition of need, qualify for a " TBI waiver. "

There is another organization which is chartered to help people with

disabilities, the " Center for Independent Living. " I don't know how they get

their money or how they justify their existamce. but they must get federal

funding because there is a Center for Independent Living in every city in the

country, from what I can figure out, going on-line.

This group provides services for which I qualify. The problem is, they won't

provide me with services. They don't justify this, they just cancel

appointments, yet keep me on their mailing list, which leads me to believe they

may possibly be counting me as someone to whom they provide services for

purposes of reimbursement or funding, without actually doing so.

I'm very frustrated by this. I had a TBI in April of 2004, and four years later

still have been unable to get any on-going services. I was already disabled and

getting SSDI because of muscular dystrophy, but don't even get me started about

the Muscular Dystropy Association.

I saw a photo of a teenage boy wearing a T-SHIRT which read, " WHO THE F*@#

IS JERRY LEWIS? " which pretty well sums it up. I appreciate it that a celebrity

has taken the time and effort to lend his name in what is no doubt a sincere

effort to help the unfortunate victims of these diseases--muscular dystrophy is

an umbrella name for about 40 separate diseases, some much more devastating than

others.

The MDA does apparently give money for research, and puts out a monthly

newsletter. It also sponsors a monthly muscular dystrophy clinic, although the

" sponsorship " involves only scheduling the clinic, so that people who might want

to avail themselves of services are at the mercy of the availability of

physicians and other services at the clinic in their community, which in Duluth

is not up to par, to put it as mildly as I am able, given my experiences here.

I am fortunate, relatively fortunate, that although I am too disabled to work,

that my disease is mild compared to the effects of some of the other diseases

which are labeled " muscular dystrophy. "

It seems that the primary purpose of many of these organizations, the MDA

included, is to raise money for their own salaries. I think some are better

than others, but it is worth doing a little research before donating too

liberally to some of these " causes. "

> From: laureen_forman <lforman@...>

> Subject: [ ] Re: CPT Code for Hyperbaric

> medicaid

> Date: Saturday, August 9, 2008, 3:01 PM

> -

>

> It's the code for HBOT in general and was kind

> enough to

> submit 2 separate codes which I think the difference is

> just if it's

> physician atteneded or not.

>

> I'm using the Dx of CP. Someone had posted on one of

> the lists that

> I am on (don't know which one) that they were able to

> get it covered

> under the Dx of CP.

>

> Hope that helps. And thank you - much appreciated.

>

> Laureen

>

>

>

> > >

> > > The code is 99183 Good luck and God Bless,

> > >  

> > >

> > >

> > > Sudylo RN / CHT

> > >

> > > www.juliashbot.com

> > >

> >

[Guest guest]

I totally agree with these sentiments.  I am the mother of 2 boys with autism. 

I fortunately have health insurance with work, but Medicaid Service Coordination

is a joke.  I have a friend who is a Medicaid Service Coordinator.  She told me

that if they find something they don't know how to figure out that they are told

to just call Child Protective Services, who don't have any training at all in

children with disabilities which just puts the family through an awful lot of

stress for no help at all.  She said- basically, that just teaches the family

not to ask for help from these agencies.  When I heard that, I was upset.  I

understand why you might see red on this topic.  It seems like a lot of

bureaucratic money spent without much help for the families.

 

Dana Gerow

> From: laureen_forman <lformanlforman (DOT) com>

> Subject: [ ] Re: CPT Code for Hyperbaric

> medicaid

> Date: Saturday, August 9, 2008, 3:01 PM

> -

>

> It's the code for HBOT in general and was kind

> enough to

> submit 2 separate codes which I think the difference is

> just if it's

> physician atteneded or not.

>

> I'm using the Dx of CP. Someone had posted on one of

> the lists that

> I am on (don't know which one) that they were able to

> get it covered

> under the Dx of CP.

>

> Hope that helps. And thank you - much appreciated.

>

> Laureen

>

>

>

> > >

> > > The code is 99183 Good luck and God Bless,

> > >  

> > >

> > >

> > > Sudylo RN / CHT

> > >

> > > www.juliashbot. com

> > >

> >