Was: Dr. Phil... Now: KKI and other options

[Guest guest]

Leah brought up some very good points about the costs of programs and

how or who will pay for them.

We used to take Nick to KKI (thanks for telling me about them!).

That is until our last visit when he was 6 years old (he's 14 almost 15

now) when their office informed me that WV Medicaid wasn't paying KKI

and I'd have to cover anything my insurance BC/BS (Fed) didn't cover

out of pocket. That visit ran us over $200 (not including hotel, gas,

food costs) as I had a $200 deductible that had to be paid right off

the top. When I quit working for the Feds we initially put Nick on

Jeff's insurance at work but with this latest job we've dropped down to

just covering Jeff and I and have the boys on CHIPs (Nick's still on WV

Medicaid provided by his receiving SSI). So as far as KKI is concerned

Nick has no insurance we'd have to pay everything out of pocket, can't

afford it so he no longer gets followed by their program.

It's been suggested that I get him into Cincinnati's DS clinic but for

some reason everytime I ask my son's ped to refer him, the office

personnel gives me the run around (including if they won't pay for KKI

what makes you think they'll pay for Cincinnati?). I can't stand the

idiot at WVU that makes the official diagnosis of DS in WV (and

supposedly counsels so many WV families when they have children with DS

-- woman has no bed side manner!).

We've had issues the last few years with Nick that have made me

question my ability to be a good mother to him. I'm in the process of

trying to get him into a Behavioral Clinic run through WVU but they

lost the first set of paperwork I faxed them so I have to fax them

another set.

I didn't see the Dr. Phil episode, but like others have said TV tends

to sensationalize things for ratings. Also, like others have said

this mother had to be desperate to get help for herself, her family and

her son to turn to Dr. Phil. How many of us would want to open our

homes, lives, etc. to the cameras? How many of us have reached the

point of desperation that we'll say, " I'm drowning here, if I have to

open myself up to judgement from others to get the help I need then so

be it. " ? There was a time when Nick wasn't sleeping (and therefore I

wasn't sleeping) that my Dad wanted to contact Dr. Phil for help (as we

weren't finding any locally). I even wrote Dr. Phil about our problems

-- never heard anything and Nick is back to somewhat sleeping now.

Cost is a major deterrant for a lot of people. In order for Nick to

get his SSI (which gets Nick his medical card), Jeff has to watch his

income and we have to watch our assets. My other sons are effected

because their parents are stressed from dealing with Nick's issues. We

have less resources available to do fun stuff. But even with all this,

I wouldn't trade Nick for anything (loved to have some of the issues

resolved though).

Look at the camps, the alternative living environments, etc. that are

available -- most of them cost major bucks and aren't covered by

insurance. Those of us who aren't independently weathly (or have had

to rely on SSI while are children are growing up and haven't been able

to save $$) can't afford to send our children there. Often parents

can't afford to get the help that is available either because of the

cost of the program itself or because of where the program is located

versus where they live.

Anyone have suggestions on how to level the playing field so to speak?

Cari