I've been on SSD since '98 and I get only a little over $600 a month. I
can't even afford the monthly Medicare Part B deductible, which is why
I'm still on my father's medical insurance as a "disabled dependent".
Which is another way of saying that my parents don't believe that I can
take care of myself. So, I've lived with my parents for 40 years because
I can't afford any place else to live.

What I really need is more money from SSD ($1000 a month would be nice!)
I need to be able to afford Medicare Part B and a place to live in MD. I don't
want to live with a roomate, because after 40 years with my parents, I just
need my space. And, since my asthma is affected by my mother's smoking,
her chemical cleansers, and houseplants, I could really use some fresh air.

My mother's name is also on my bank accounts and credit cards, so I can't
even buy anything without her knowing about it.

Is there something wrong with me wanting to have a life of my own without
my parents hanging over my shoulder all the time?! There has to be
a way for me to get out of this house and live on my own, but I haven't
found it yet.

Thanks for letting me rant.

Gina,

No, there's nothing wrong with you for wanting to live independently.

I'm not sure how SSD works (since I've not been on it) yet, I'm hopeful, someone else who does understand SSD will post. This is what I don't know: Whether SSD adjusts the monthly amt. if someone could find a place to live on one's own.

Maybe you've already checked out the following, I dunno, so I'll go ahead and post them:

http://www.dors.state.md.us/dors
http://www.mcil-md.org/services.htm
http://www.nod.org/index.cfm?fuseact...Page&pageId=17

Would this site help at all? Perhaps you have already been thru it.

http://www.ssa.gov/disability/profes...ical-Adult.htm

Kitt

I think I remember the blue book from when I started with SSDI. If
I'm remembering this correctly, it was one of the reasons I was able
to get Disability, because Epilepsy (which I have) was listed in it. I
don't remember if hydrocephalus was listed, but that was another
reason that I was able to get SSDI-because I already had a "permanent
medical condition". (They were wording it differently, but I don't remember
the term(s) they used).

I'll look through all the links and hopefully, I'll find something that will help
me.

Thanks, ladies!

I really feel sorry for you... I really wish I can help you.

How is the blown circuit issues (?) from the last board going, did you convince your mom and dad to look into things so your house won't blow a fuse. (I don't remember what went on with that.)

I am absolutely not siding with your parents. I see your point totally. You need space and CLEAN air to BREATHE. You are INTITLED to that. You know, if your mom and dad are that desperate to keep you home, is there a possibility that something was available within walking distance of your house.
Or hey! What about creating an "appartment", you'll still keep your mom and dad happy by being there, but you really aren't. Maybe if your mom and dad upgrade things like appliances you can take the old appliances and make your own space to live.

I, too, am permanetly (for the time being) stuck at home, but I don't mind with my beloved dog who is such a joy. I want to spread out sooner or later, but I want to be arround for Cocoa since no one is arround that much, except me.

Though, you would think your parents would applaud your desires to be on your own reguardless of anything. I've been trying for some time, but when my sister found out, she totally went bellistic on me and pretty much said I had no business moving out on my own. (Even if it wasn't that far, probably not even a BLOCK away.

It gets better, my own DAD refuses to see things my way and expects me to stay here the rest of my life. I know my mom has faith in me because she supports my desires to be a singer. She knows I am under a great deal of stress being "on the system" and she knows that I deserve better. (Like I said before my dad "twisted" her arm to see things his (and his "know it all" buddies') way about MY life.

Good luck, hon.

He looked at the board, but nothing else has been said since, so I'm not sure
if he's doing anything about it. Although, he's been "b--ching" (my mother's
word) about my mother's smoking in the house. I can't seem to get it through
to either of them that the smoking is not the only trigger I have. Even if she
quit tomorrow , there are so many other things in the house that
can trigger an attack that the only way for me to be able to breathe is if I
moved out. Oh, get this: my brother and his wife are ones who agree that
I should move out, but my mother won't listen.

Round and round we go...

Gina,

When a person is awarded SSDI, the monthy amount they recieve is based on their past earnings. The more you earn while working, the more money per month you will get from SSDI.

For people like me, who became disabled at a young age and barely worked enough and made only a little money at work -- well then there is a minimum payment (in the $600 per month area) that SSDI pays.

So, long story short - whatever amount you get from SSDI now is the most you will get (except of course for the "Cost of Living" increase at the end of every year which is usually about 1%).

So, the $600 you get per month won't be going much higher no matter what (again with the exception of the once a year tiny 1% increase).

However - there are other programs out there that can help.

There is Section 8 housing vouchers where the federal government pays all or part of your rent. Then there are other renters rebate programs on the state, county, and town levels depending on where you live.

There are food stamps, energy assistance for the electrical bill, heat assistance, some states have reduced phone bill rates for the disabled.

Many states will pay the Medicare part B premiums for you, if you are low income and need the help. In your situation because you still live with your parents and are still able to get medical insurance through them then your state will not pay because there is not a dire need... but if the health insurnace through your parents was no longer available, and depending on other circumstances for eligibility, the state could pay for the medicare premiums for you.

To find out about the types of programs in your state, and to find if you are eligible, you would contact the Department of Social Services (formerly known as the welfare department) and talk to a case worker and fill out applications for the programs.



If you continue to be stuck at home - is it possible to purchase one of the Hepa filtration room air purifiers? The Ionic type of air purifiers have been shown in studies to increase the amount of bad air in the home, but the Hepa type of air filtration units have always been considered to be the best.

A room unit can cost about $200 and up depending on the type of unit and the size of unit you need to clean the room, and units that clean the air in the whole house are thousands of dollars.... but could you get a unit to purify just the air in your bedroom so that you would at least have one room in the house that has safe air for you?

I have the Ionic Breeze at home, but it doesn't help much unless I stay in
my room all day. There was one in the living room, but my mother didn't
like the fact that it "looked dirty" after a while (an obvious sign that the
air in the living room was polluted), so she washed the air filter...with a
hose! Needless to say, that particular air
filter doesn't work anymore... And, no, she's made no effort to
get a new one. I think she should pay for it, not me, because she's the
one who broke the last one!

Now, about the insurance: the story I get from my mother is that my
brother will be adding me to his medical insurance in a few years. I don't
see how he can do that, though. It would seem to me that after my father
retires this year, I would have to come off of his insurance and sign up for
Medicare. But, maybe there's something I'm not understanding about it.

If I could just figure out a way to look into these programs without my
parents knowing about it.

Its very hard for adult children to live with thier parents no matter if disabled or not. Some states have social workers that can help you to live alone especially if you are having the problems that you do.Talk to your doctor or maybe medicare and they may refer you. Someone else on this forum may be able to help you more. The other option is a separate apartment in your parents home, in some homes it can be done easily, my house is fairly small but if I had to it would be easy to do and not to expensive. If you don't want your parents to know enlist the help of your brother or sister and let them do a lot of searching for you. Good luck to you .

Fron what I understand of your last post, your brother and sister-in-law are urging you to see if you can do better than what your mom and dad want you to do? It kind of sounds that way, at least THEY have faith in you. Correct me if I am wrong.

Hey, you are over 21! You can do whatever you want. So what if driving may be a problem, there is public transportation (I'm in the same battle with my dad) and I am confident you have common sense enough to tell you to stay put if you feel the slightest bit funny.

Can I ask if this has been an issue your ENTIRE life, and I bet you are going to have issues with seccond hand smoke before you have issues with your shunt.

Oh yeah, there is something called "life alert", but there is one thing that coud be an issue? When your shunt goes down, does it go down without warning or do you normally get gradual signs? This may or may not make a difference as long as you get into surgery ASAP.