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Disabled adult children

Started by Pen, November 03, 2009, 08:18:17 am

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Pen

We've just received a notice that our daughter isn't able to stay at her residential program anymore. We live in an area where there aren't many resources for the disabled and I'm trying not to worry, but I'm just on the verge of a major freak out. It's imperative to stay calm when dealing with this so the people who hold the cards don't think I'm insane :P Not a lot different than dealing with controlling ILs!

Many things are at stake here - her happiness and well-being, her health insurance, my job, my future retirement, DH & my freedom. We don't know what's going to happen. Along with the uncertainty is the worry about her recent behaviors (the reason she's being moved) and why they're happening.

We're without close family and our friends and aquaintances have their own things to deal with, so it's just us. The social workers seem resentful when having to work out issues with our daughter, and we've been manipulated behind our backs by care providers and case workers. Maybe that's why I'm so sensitive when it happens with DIL!

All I wanted was a family, nothing special, not riches or fame or glory. There must be something in my demeanor that lets controlling, cold & uncaring people know I'm easy prey. Thanks for letting me vent!
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

2chickiebaby

Penstamen,
I wonder if there is anyone on here who knows about such things?  Maybe there is....oh, I hope so~!  To ask you to stay calm right now is too much.  This is awful. 

I'm with you on the "only wanting a family".  Hugs

Anyone on here who knows about the Disabled, help. 

Pen

Well, I'm beginning to think of all of you as family...thanks for the support. After posting here, I felt clear and calm enough to make a phone call that needed to be made regarding this issue, and it went well! I feel a lot better and much more hopeful. Things are still up in the air, and there may be battles to be fought and won (hope not!) but I'm not crying or freaking out. My husband will be so glad :) Thanks again.
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

just2baccepted

Well I guess that would depend upon where you live.  I wish I knew what to tell you except just talk to the social workers?  They should know about community resources. I take it she's past the age of 18? I would think then you are not responsible for her financially.  So that's when the state benefits should kick in for the disabled.  I know the hospital social workers were good at helping set up everything when my dad began his final stage of his cancer.  It played out fairly smoothly.  God Bless and Good Luck.

greeneyes100

sorry to hear about your dilemma. I am not any help as I live in Australia and I have a friend who is having the same problem. We have so much red tape hear, it goes from 1 dept. to another. I am thinking of you   D

Invisible

Penstamen,

I am so sorry you are presented with this problem. I have never been in your situation. You will be in my thoughts and prayers.

I could have written your last paragraph.

"All I wanted was a family, nothing special, not riches or fame or glory. There must be something in my demeanor that lets controlling, cold & uncaring people know I'm easy prey. "


Quote from: penstamen on November 03, 2009, 08:18:17 am
We've just received a notice that our daughter isn't able to stay at her residential program anymore. We live in an area where there aren't many resources for the disabled and I'm trying not to worry, but I'm just on the verge of a major freak out. It's imperative to stay calm when dealing with this so the people who hold the cards don't think I'm insane :P Not a lot different than dealing with controlling ILs!

Many things are at stake here - her happiness and well-being, her health insurance, my job, my future retirement, DH & my freedom. We don't know what's going to happen. Along with the uncertainty is the worry about her recent behaviors (the reason she's being moved) and why they're happening.

We're without close family and our friends and acquaintances have their own things to deal with, so it's just us. The social workers seem resentful when having to work out issues with our daughter, and we've been manipulated behind our backs by care providers and case workers. Maybe that's why I'm so sensitive when it happens with DIL!

All I wanted was a family, nothing special, not riches or fame or glory. There must be something in my demeanor that lets controlling, cold & uncaring people know I'm easy prey. Thanks for letting me vent!

Pen

Thanks, Invisible, I'm thinking of you too.
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb

cremebrulee

Pen....hey, hello and good morning...
I have a friend, who has a son who is mentally challenged...he has been in a home for years, but due to meds they had him on, and the workers dismissing the fact that another patient was hitting him...he was very unhappy and challenged. 

She started researching other programs and doctors...his new doctor got him off certain meds, and put him in a different home, there was a huge change in his behavior and his ability to socially fit it....he is much happier and less trouble....

Now, he is in a privet home, which is supervised at all times, but he has his own privet room, and as I said, he is a completely different person, a complete turn around.

You've heard of medications out there which effect different people in different ways.  Medications are chemicals....which can have some adverse effects on different people depending on they're own body chemicals, alergies, genes, etc....therefore, your child could be having side effects to the meds, they are giving her.  It could very well effect negative behavior, depression and disconnect, along with violent behavior. 

From what you are describing, it sounds to me, like her caretakers are meerly concerned about only doing they're job, putting in they're hours and the heck with anyone else. 

Sounds to me, like there is a whole lot more going on here, and it isn't isolated to just the meds....

I'm so very sorry to read, your experiencing this worry, stress, and road block....please know that they're are other options out there, you simply need to start educating yourself on what is out there, and I would start with your doctor, and, the hospital....talk to medical providers who can lead you in other directions, and also, speak with parents who have the same kind of special needs children....they're are so many groups out there who form for these particular reasons, you just haven't been privy to yet. 

There is no worse fear then the unknown, but can reassure, you, when you start to research this, it will not seem so bleak....but the time invested will in fact be necessary...to learn where a safe facility is, that will fit all your needs, including financial. 

Big hugs, and thank you for considering us your family....

Pen

Thanks for all of your kind words. We're getting a handle on this, but it's still very stressful. To update, DDD finally moved to her new residence. There are good and not so good aspects to this, but we're hoping it all works out. The best thing is that we have all the access we want, which the last residence did not allow (it made it hard for them to manage all their clients.) We've had support from her doctor regarding meds and are hoping the new, lower dosage will be better.

In our state, and especially our part of the state, what limited resources there are have been cut even more for disabled adults. We've never had help due to a bureaucratic snafu way back when she was a toddler which then dominoed to all the other agencies that could have, and should have, stepped in. We did it all ourselves, while working full time and raising DS. Our families were either too far away geographically to offer support or were too weird about having a GD who was disabled. I think I'm just tired, but you're right, Creme, I must keep on researching and working with the few agencies that are available to find the best fit for DDD. You never stop being a parent!
Respect ... is appreciation of the separateness of the other person, of the ways in which he or she is unique.
-- Annie Gottlieb