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I read something on DKos the other day that sparked me into writing this diary.  It is my first diary, but a very important issue to me personally.  It won't have fancy graphics or charts, mainly because I am a Master's degree student and the only charts/graphics I can handle deciphering right now deal with crab larvae and harmful algal blooms - both of which aren't entirely relevant.

More behind the curtain!!!

I just wanted to give a voice to the problem we seem to have in this country regarding those individuals who are mentally retarded (MR).  First off, it is a hard distinction to make for some people.  There are individuals who are obviously labeled as such, those with Down's or those with Austim.  Yet, there is a largely unnoticed sector of individuals, who have been labeled MR, but who in reality really walk a fine line of inclusion.

My brother is one of those individuals.  Unless you meet Greg it is really hard to understand what shapes his disability, but I will try to explain things to the best of MY ability.  When Greg was small he had a severe delay in speech, many people thought that he would never speak, he was even entered into a ASL program.  Eventually speech started to develop, but it was garbled..now, most people think he is from a foreign country, as while he is understandable, it is also 'not normal'.  

He has graduated high school, a horrific time for my parents, where it seemed as though they had constant fights for services.  He graduated high school at a second grade or lower level for reading and math abilities.  He learned to tie his shoes when he was 14.  He doesn't know his left from his right.  He has no friends. There were many tests given to Greg and because of the language, reading, mathmatics barriers, he scored as MR.

But, this young man is exceptionally bright.  He has full awareness of his life, the people in it, and his disabilities.  He has a outstanding knowledge of military history, so much so that he picked out a Higgin's (sp?) boat that was floating in the harbor the other day.  How many people out there know what a Higgin's boat is, and what it was used for?

In High School, he got a job at the local grocery store bagging groceries.  He hated it.  In all honesty, who would enjoy bagging groceries for an entire 8 hour shift?  But, my parents reinforced the notion of not quitting etc. etc. and he stayed on.  After graduation, my parents were in contact with really the only agency which tries to help individuals like Greg find jobs etc.  They couldn't understand why he was unhappy with working at the grocery store "but, Greg, it is a great job...you should be happy you have a job."  I kid not.

But Greg and my parents didn't give up.  He just got a job at the local hospital working in the kitchen area.  He doesn't prep food, he doesn't serve food, he washes tables.  He actually does like this job, but for this job, they want him to have a job coach. A 4-year-old knows how to clean his/her place, but Greg needs 'coaching' on it, he hates her.  Here is the real kicker, they hired him, made him train for two full 40 hour weeks...but now he has no shifts assigned to him.  None this week, 3-4hrs. next week, and 1-4hr. the following week.  Was this a pity hire?  

Overall, my point is this.  Something has to be done in this country so that all people, even groups of people we don't normally think about have a fair shot at doing something fufilling.  There is no state support, and there are no real agencies out there.  It is like we have given up on these individuals, or don't just don't completely understand their situations.  Happy with bagging groceries for the remainder of his life?  Please, who, in all honesty, would be happy doing that forever?  All I know is this, it is very disheartening the struggle that families have to go through, the services they are denied, and all the money they spend.  When my parents get too old, the caring of and helping with my brother will be handed to me.  I am quite ready to accept the challenge of helping him find a meaningful path in life....I just wish there was some support in place already.

I know this mainly has to do with the lack of funding in every state...it is just sad.  Please let me know what you think..if anyone has more information to share, by all means.  It would be great to get some kind of discussion going.

Thanks.

Originally posted to moanablue on Sun Oct 23, 2005 at 08:43 AM PDT.

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Comment Preferences

  •  Not sure... (4.00)
    If this will get any comments at all.  I don't really care, it was something that just had to come out.

    Thanks!

    •  NOW is time to start making long term plans (none)
      Having dealt with a similar situation I have to scream out a warning.....  your parents NEED to make plans NOW!!!!  

      It seems like your family is on top of the overall issue BUT, they need to think long term and have things set up LONG before they need to be. He needs to become established and transition elsewhere BEFORE your parents die.  

      Is he "functional" enough to be on his own?  If so, he may have legal rights which may or may not help in the long term. Our country provides people with "rights" which can work counter to what is best for the long term.  Still, he needs to be trained to deal with "life."  Advocates and various programs are big helps in doing this.

      If he needs a supervised living environment, start dealing with that now... planning and exploring options..  While it's easy to say "family can handle it" - in the long run, it becomes VERY difficult if not impossible, without having real impacts on the lives of others.  

      I was confronted with a "different" situation.  A brother who is mentally ill.  Our parents did NOT deal with it and pretended for years that things were "working."  They did not sell their house when they moved, keeping it so my brother would have a place to live.  I dealt with the larger issues for 20 years, part of the "enabling process" - though I thought it short-sighted.

      Eventually, he checked himself into a hospital, was diagnosed as obsessive-compulsive (with a few other issues as well I believe).  But even though my mother came back here to get him established in treatment, he ceased all medication and treatment after she left.  He was never FORCED to deal with all his problems.  My mother died in denial, saying he was "fine".  He was NOT.

      Settling my mother's estate was a horror show.  He did not want to leave the house - which HAD to be sold.  My mother's intentions were for him to have a place he owned, a condo or co-op. This was made clear to him - but he refused to take any stepos voluntarily before she died and she made no efforts to force him to do so.

      He did buy a place but refused to move into it....an expected OCD reaction.  He finally did so, AFTER the house was sold and his rent quintupled to market levels.  As executor, I was stuck being the bad guy forcing him to do something he didn't want to do for the first time in his life.  My youngest brother, unseen in these precincts for 25 years, was of no help - though he wanted HIS share soon enough. A year of MY life was burned up in all this.

      I figure my parents subsidized this brother's life to the tune of $300,000 over 20 years. Yet they did NOTHING to prepare him to live without them.  He had no checking account, no credit history.  My mother had paid many of his bills and charged him almost nothing for "rent."  He has worked the same minimal skilled job (with NO real benefits and NO pension) since he was 18 - a job he regularly says that he hates.  But frankly, it ain't that much work and he will never change voluntarily.  MY parents SHOULD have forced him to get a job at the Post Office or somewhere he would have had benefits and a pension but he NEVER had to do anything he didn't "want" to do. Even when they HAD to move, they kept their old house for him to live in.

      He was fed enough money BEFORE my mother's death so he could pay cash for a co-op and was handed more than enough to live out his life.  BUT he has NO oversight and there are NO contingencies attached to his inheritance.  

      Frankly, All I see is a wasted life - illness that IS readlily treatable, and money wasted on a life that refuses to change, a life that has had NO impact on the world at large and never will. But, as noted, this illness IS treatable and he could have led a "productive" life - but he prefers an all-purpose excuse for his failures to deal with anything in life.  He didn't "like" hearing that HE was responsible for his life.

      After dealing with enough doctors and advocates, I took their advice and walked away when the estate was settled.  He continues to refuse treatment - and he is "independent" enough that such is his "right".  Given the effects on MY family, I have finally had it. He is on his own - for better or worse. MY Largest nightmare is him showing up in 5 years and going "I'm out of money".  Well tough, I'll send him on to our other brother - it's HIS turn to deal with it all.  My compassion burned up a long time ago.....

      Slightly different that someone who is classified as "retarded" - the mentally ill can be VERY "smart" and manipulative as all hell to get what they "want" - while being destructive to all those around them.

      BUT the point is the same.  Parents and families need to plan for the future. People - whatever their problems - need to be prepared to function on their own, or if unable to do so, prepared for living in a group home or whatever.  Do NOT wait until the last minute.... and it is NOT fair to leave such a situation to others in a family.  PARENTS need to deal with things so such a child is prepared to deal with life when they are gone.

      And government isn't going to do it for you... the mentally ill got dumped on the street a few decades back, untreated and unsupervised.  Was it really better than hospitalization?  No answer, but the guy I always used to see under the Bruckner had to have been better off ANYWHERE else.

      •  And as a side note (none)
        While you may feel that you can handle your brother in the future, such a comittment is NOT easy if you have your own family to deal with.  Marriages have ended over such outside issues. God knows that my family was stressed enough.

        Do NOT discount group home situations and such. Such situations CAN work quite well.  Taking full responsibility for your brother can be a large burden on your family - in many ways, including financial.  In many respects, a near-by group home setting can work well, depending on the level of independence your brother is capable of.

        You can retain close interaction while still allowing him to have an independent life as well.  

      •  Thanks.. (none)
        for sharing your comments.  My parents are trying to find a place for him on his own.  It is hard, as rent in their area of the country is just insane for a even a one bedroom.  

        Luckily, for me, before my husband became my husband we had a long discussion about my brother and what the eventual responsibilities would be for us.  He is fine with it, and I thank him for that.  

        My parents have also created a trust in their will, so that when they pass on, half the money goes into trust for him and half goes to me.  I am the only person who can take money out of the trust for him, according to their wishes.  This is mainly because they feel like he could get scammed by some untrusting girlfriend or whatnot.

        Your idea of setting up a checking account and getting some credit established is an excellent idea, and I will be passing that on to my parents.  I think that is one angle they have not covered yet.

        Thanks!

        •  Look into local agencies for help (none)
          I don't know his capabilities and wouldn't presume to judge what's appropriate but look into services and such.  There's usually a County Level "clearinghouse" for such resources.  

          I'd think there must be something similar to the "Advocate" program I was dealing with... Mental illness is a bit different and the advocate that was the most help to me was OCD himself, but I would think that there are social workers or others who are familiar with resources for the mentally handicapped.  Depending on the level of functioning, your brother should qualify for various types of aid - perhaps SS disability and more.  I know someone who's legally blind - though possessing some vision.  He is getting a tremendous amount of aid from the Lighthouse Foundation.

          Don't assume that you are completely on your own, or that government is the ONLY other place for help. Spend some time running down leads and talking to people.  You may end up in the wrong place but ask anyone you talk to it if they know where you SHOULD go...  It helped me quite a bit.  Within a week, I'd managed to distill things down pretty good - though to no avail...

          Your parents need to talk to an attorney who is familiar with these issues as well. Structuring trusts and supervision correctly in such cases is important.  

          Best advice I can give is for you and your parents to talk to LOTS of people, explore ANY and ALL options - even if you don't think they'll go anywhere, and plan things out, making sure your brother understands - as well as possible - what you and your parents want to do for him -  giving him input to the degree that's rational.

  •  Just heard on NPR (4.00)
    about the first college degree program for special needs adults.

    Here's  the link to the audio...

    Sounds like your brother might be just the sort of student who could be helped by a program like this.

  •  thank you for sharing this story (none)
    I agree this is a huge and growing issue.

    Sometimes is seems that the best "use" of special needs people is the volunteer opportunities in programs for them  that young college bound and other upwardly mobile types get. Looks great on a resume!

    Sick.

    I don't know what the answers are Blue, but thanks for bring this up.

  •  Your story is very moving... (none)
    however, I can't really take issue with the woman who said that he should be happy that he has that job... it's something that job placers say to people without any disabilities too and the sad thing is it's the truth.

    As someone like myself who has been unemployed for a long time can tell you, anyone with a job should be happy they have a job, even if it is a crappy job.

  •  Here, here!! (none)
    Thank you for your beautifully written diary, which anyone could tell, comes straight from the heart.

    We too have a 10 year old child with "special needs" (Autism, PDD, MR) and dealing with "the system" in seeing that he is treated, in all aspects of his life fairly, is without question a full time job.

    I know it will be difficult for your post to get much bandwith with the anticipation of Special Prosecutor Fitzgerald's report coming next week but let's not despair. (As familes of these unique and beautiful individuals we can't afford that anyhow) It is a topic that we need to see much more discussion of in the blogosphere.

    Thanks again.
    jordanl

    "Power to the people right on". - John Lennon

    by jordanl on Sun Oct 23, 2005 at 09:56:44 AM PDT

    •  difficult for your post to get much bandwith (none)
      Yes, I too have been obsessed with up-to-the-minute news of who might be indicted, Katrina posts, etc., but I recommended this because it's all important. Glad to see other topics come up, because this seems to be a great problem-solving forum.
         Anyway, I have been wondering what's to become of the large volume of children with "autistic" or other problems as they grow to adulthood. Hopefully there are people out there with more to give you than me- I just wanted to say blessings upon you for caring so much for your brother. May your kindness come back around.
         I believe that there must be a special niche out there for him, and perhaps it's a good thing that the hospital is treating him so poorly so quickly, as an indication that they are not prepared to know his uniqueness. Ordinarily, I might not post a prayer on the political forum, but it IS Sunday, and I keep thinking of what my agnostic husband once said when we faced an emergency. I said "let's hope and pray for...", and he said, "Okay, I'll hope, and you pray." Since then we have been in sync about how to ask the universe for what we need. So now you are in our hearts and minds. Hope that can work for you, too.

      ...learn something new every day...

      by nhwriter on Sun Oct 23, 2005 at 10:27:42 AM PDT

      [ Parent ]

  •  Moanablue, (none)
    With you in spirit.  Somehow we just can't rely on "compassionate conservatism" to take care of and give a fair shake to people like your brother, or my son (severe motor disability due to neuromuscular disease).  Unfortunately I feel that disabled people in the US are going to be in for long, hard fights.

    As for your brother being told to be happy he has a job... well, I know times are tough, but everyone should be able to have valuable, satisfying work.  If your brother was unhappy in his former job, it probably wasn' t the job so much as the environment.  Anyone who isn't around someone who is often pitied or underestimated by his peers can't understand the degree to which that kind of environment, even if meant well, undermines a person's efforts.

    I hope there is a major turnaround for disabled people in America.  I am lucky (yes, lucky) to live in Europe, and things are different; not perfect, but better for my son in the long term, in my humble opinion.

  •  Beautiful diary (4.00)
    Don't lose heart.  My older brother has a similar story, though his childhood was more brutal.  At one point some local boys hung him from a tree.  Luckily someone was passing by.  He was always getting teased and humiliated.  One of the things he's had going for him was work, though.  He's a hard worker and a cheerful person.  He found work doing kitchen prep in restaurants.  I always felt he was exploited--he works like a dog and never made more than minimum wage--but the social interactions he gets at work have been his lifeline.  It's also a source of pride to him.  Last year, at 50, he felt the pressures of restaurant life were too much and he's gotten a job at a locaal supermarket, where he works behind the deli counter or stocking things or just doing different things.  They tried him as a cashier but he couldn't do it. He's 53 and still makes $6.50 an hour, but at least he  has benefits.  Maybe it helps that we're from a small town.  I also think that all the social interaction has helped him develop. Something else that has had a surprising impact: he was very anxious always (no surprise, with a childhood like that; my father was also very abusive).  He went (on his own) to see a counselor and then went on Paxil 4 years ago.  He's much more "normal" now, ie, you can have conversations with him, it's not him talking compulsively.  I feel your love.  I guess I want to close by saying, have faith.  Somethimes things seem bleaker because we focus on them.  My brother has always held a job, has had a place to go, and has loving siblings.  It sounds like your brother has a lot of love and support from you and your parents.  The state programs were a disaster for my brother (factory work, when he is VERY accident prone and needs to move around; maybe the need to move around was what drove your brother nuts about bagging).  He's a periodic alcoholic, but then again, one of my nonretaurded brothers is already dead and another in a wheechair due to alcohol, and my most financially successful brother is always drinking.  Look at what your brother has, and have faith that things can change.  Are there local shopkeepers who need some one to sweep up or stock things?  Or is there park work available? I'm a big believer in government programs for the most part, but in this area it's been the private sector that took my brother in.  Good luck.  And honor the love you have for your brother and what that alone gives him--so many people have no one like you in their lives. I always hesitate to use the word G-d, but the two of you give each other something that is unique.  The more I age, the more I see what a blessing my brother has been to me.
  •  sadly true (none)

    and sadly common.

    Unfortunately, we're living in a period where even the most able and intelligent are languishing in much the same way.  The larger picture of society is that there is remarkably little creativity, with by and large no strong sense of purpose or progress or commitment that guides what charity and generosity there is.  Everyone is making do on relatively small stuff, or so it seems, be it in the arts or the sciences or other forms of going new places within or beyond where we are.

    The good news is that this too shall pass.  But it's sure some incredible ransom that we're all paying, and it's not too clear for what.

    Renewal, not mere Reform.

    by killjoy on Sun Oct 23, 2005 at 10:42:13 AM PDT

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