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Post by Googsmom aka Jennifer on Oct 5, 2009 9:13:27 GMT -5
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Post by alisonzmom on Oct 5, 2009 11:33:19 GMT -5
wow, changes in the wind.... what an understatement!
Hoping all goes well with whatever you all decide. Good sign that Emily seems to have had such a positive experience with her sleepover.
Hugs!!!
Barb
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Post by Jackie on Oct 5, 2009 16:21:35 GMT -5
grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr! OK...all you parents out there listen up. You must get interested NOW in independent living. I am telling you that there really are not that many options. I thought that when I really went hunting I would find more.
Of course I live in Texas...maybe lots more ops in other places.
Here is what I have found. We are also looking for options that will utilize her current funding (which is generous) and not require too much out of pocket. Reasoning behind this is that we want to make sure that if it falls to sibs to support her, she will be used to the options that take her state and federal funds. We intend to supplement to make sure she has everything she needs.
Now there are certainly some good options if you are made of gold. For instance Andrea Friedman of Life Goes On fame is the daughter of wealthy parents and lives in an L.A. apt in a ritzy part of town with private supports. A few others I know have their own private pay apts and utilize support either from agencies or from family. We are looking for something that will allow Em to be as independent as possible in the eventuality that family support goes away (i.e. Katie or others move away).
So far all we can come up with is a group home or companion/foster care. I could never in good faith let her move into someone elses home (apart from family) and was told if we desired companion care such as living in one half of a privately owned duplex...this would be advertised for on something like Craig's List...which freaked me out.
We as parents need to put our heads together and lobby the govt to let us use funds for other than just "integrated" housing. This means where only a handful of people with the same disability, ethnic group, etc are housed together using federal or state funds. All of this a result of institutionalization and well meaning advocacy gurus..most of whom do not have a child with a disability.
In our case this means no small apt complexes with a resident director. I am not speaking for everyone but frankly I think Emily would benefit by living with a group of people with similar needs for social and recreational purposes.
Most adults with DS and other developmental disabilities now spend a great portion of the daytime hours in jobs or other situations out in the community. The advocacy gurus in good faith think that they should also live in a non segregated environment. I agree with this...to a point. But since isolation is the biggest complaint of those who have their adults in a typical apt I am thinking that is worse than segregation and living around those who you can relate to easier.
Now if they put Emily and a roommie in a typical apt complex...they cant put another group of friends anywhere near them in the same bldg. They must spread them out thru a complex in the same proportion that disabilities occur in the general population. Makes no sense to me because even if these cluster of friends want to live together ...they can't.
Of course you can do anything you want...hire anyone you want ...if you have a million dollars which we don't.
So my advice now is to think of this...the time to think of it is NOW...not when you finally need it.
Most programs will only pay for the support ...not the apt or the house unless it is a group home. I have never heard of a group apartment...but that might be doable.....hmmmmmmmmmmm.
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Post by Connie on Oct 6, 2009 9:14:58 GMT -5
Sorry, I'm going to be pretty flip here so forgive me now!!
I completely agree with you. Why do they have to segregate those with disabilities away from others like themselves? Others they can relate too? It is human nature to be attracted to people like yourself and the same interests. Why to people discriminate?
They don't to this with the poor. How many public housing complexes to do you see or have in your community? Heck...for the most part they have the majority of them lumped in their own housing complex with few exceptions!!! They even build complexes for the poor!!!
Ugh!!! Now you have me going!!!
Good Luck, Connie
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Post by Googsmom aka Jennifer on Oct 6, 2009 9:44:05 GMT -5
{{{{{HUGS JACKIE}}}}} I Praying a great sollution will come
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Post by Jackie on Oct 6, 2009 18:12:43 GMT -5
Connie...you know I think part of the problem is that advocating for the disabled is an extremely popular vocation. And all too often those doing it the most and being the most vocal have no personal experience such as a family member. In theory it all sounds just soooooo right but I think in all of this the "walk a mile in my shoes" adage makes a lot of sense.
You are right...lumping all sorts of people...ethinic, age, economic together in one spot doesn't seem to bother anyone. Most of these people are able to make their own choices and can change their situations if they choose. Most of our kids...once placed...are somewhat at the mercy of others to make changes for them.
I also think our major support organizations have also bought into the integrated philosophy...they say its all individualized but I know in my case all sorts of unrealistic ops have been presented to me lately by those whose opinions I normally value. All these have been presented under the guise of "staying in the community". I maintain that most of our folks manage to spend most of their day among the non disabled at school and work so why can't they come home at night to a living situation they are maybe more comfortable with. IMHO we are still trying to make them into square pegs...with a round hole instead of modifying the world and people around them to make it easier. It's all a matter of choice, but in our case the choice is not there to even make.
Yes...Em would love to live in a large apartment complex if she was included in a positive and on going way...who wouldn't. Party party party ;D (or as Em might write...praty praty praty)
But without a mentor and constant supports for both her and the people around her who are non disabled this is just not gonna happen. In a PERFECT WORLD...yes it would.
So...we all need to get to work...and get creative...and make it so that when the time comes for all of you...there will be a lot of choices.
Jackie
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