Linda G. Hill

Life in progress

The Advocate

37 Comments

I’m not sure if this is going to come off as a tired rant, a tirade, or an attempt to show others that they’re not alone, but here we go anyway.

Advocating for one’s family is a ball-buster. Bureaucracy makes it so that the people working at the level the public deals with on a daily basis in the schools, and all the way up to the federal government, are in a position to simply throw up their hands and say, “Sorry, this is the way it is.” Which makes it necessary for us advocates to go above their heads. But it’s not as easy as just making a phone call. Oh no. There are “proper channels” we must go through. Forms to fill out and send either by snail mail or fax machines we have to drive around town to find and then spend money on.Β  And then there’s the wait. The wait that is so damned long we forget whether we do indeed have to just wait or follow up. Follow up? Oh yes, start at the bottom again to get the right phone/fax/post office box number.

And while all that’s going on, something else has come up. It’s a lot of work and it’s stressful! Even if we do manage to talk to someone on the phone we have to go into “stand and fight” mode before we even start. Because nothing is easy and no one at the other end is going to give in. If we’re lucky (and I use that term loosely) we get transfered to the next higher up on the food chain so that we can go through our case again. And then what? Normally it’s wait and see. Or, “We’ll mail you the forms to fill out.” Again.

What I have on the go includes (but is not limited to) getting an aid to help my 20 year old Autistic son in class so he can graduate high school this year; getting the funding I’m entitled to for my other son’s eyeglasses; finding out what the hell is going on with the holter (heart) monitor his cardiologist ordered months ago; sorting which hoops I have to jump through for the nurse at his school who doesn’t want him to eat by mouth this year, this after a lengthy process (with a two year waiting list) of having a swallow study done, followed by a report which was discussed at a meeting with the specialists and the above mentioned nurse to explain that he could eat by mouth; finding out what happened to the money my mother was supposed to get back from the condo corporation after we sold her unit… The list goes on and on. And it’s all wrapped up in bureaucratic bullcrap.

Luckily I’m a stay-at-home mom, so I don’t do anything all day anyway… πŸ™„

I’m sure I’m not alone in this. In fact I’m sure there are others out there who have it even worse than I do. I have to wonder if there’s a better way to do things. Don’t you?

Author: LindaGHill

There's a writer in here, clawing her way out.

37 thoughts on “The Advocate

  1. I feel for you Linda. I find that as time goes by, trying to rectify any concerns with any companies, let alone the government, is a lesson in patience. I don’t know when everything became so darned difficult. Oh wait a minute, I remember, it was in a time before pushing buttons to bypass automated voices, and human compassion had a better existence. A time when human interjection counted for a lot; like going on a job interview and having the opportunity to present yourself, instead of submitting in cyber space and pegged as just another entry number. Don’t even get me started. I feel for you girl! πŸ™‚

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  2. It is very tough to fight against the bureaucracy for our beloved ones. I agree Linda.

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  3. I have yet to find a “better” way. Sometimes I feel it is a marathon, that my persistence will outlast the bureaucratic bulls**t.

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    • To take your metaphor and run with it, so to speak, it really sucks going to bed out of breath every night though, doesn’t it? πŸ˜› If I do find a better way you’ll be the first to know, Vic. I appreciate your commiseration. πŸ™‚

      Liked by 1 person

  4. There should be a better way to do all of this. It truly shouldn’t have to be so hard to get what our kids need. Sending you hugs. No matter how much harder it may be for someone else in this world, this is your reality, and you deserve to own how much it sucks.

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  5. I know all about this from various friends and family members. I do not envy your position, even though you are ‘at home’ and ‘are capable.’ Sometimes being different does not come with the bouquet of admiration and accolades we were led to believe it did. I wish it was better on your side of the border, too.
    Rants are important.

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    • Rants do help. πŸ™‚ Being different more often than not means you fall through the cracks of the society that’s supposed to be helping you, unfortunately. Thank you for your support, Joey. It means a lot. πŸ™‚

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  6. I was an advocate for foster kids and there is nothing more frustrating that trying to get services sometimes from the very institution you’re working for! Not to mention when the “experts” get involved and they all have a different diagnosis. Hang in there!

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    • Ha! Yeah, getting a straight answer –or getting an answer straight in my own head– is difficult when everyone is saying something different. πŸ˜› And you’re right that some of the “services” should be using the word a little more loosely. There’s so much lack of communication! Thanks for commenting, Jan. πŸ™‚

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  7. Gosh! I feel for you. It is hard to know what to say. Negotiating the beaurocratic maze just to get a fair go! It is good that you write so openly of your struggles. Others need to hear this stuff. I believe in justice. When all else fails, there is justice. Right ultimately triumps and justice does prevail. Keep fighting the good fight. Love to you – Suzanne

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  8. We all go through this in varying degrees. Every day! Can’t we all just… start over?

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  9. Oh, my sympathies! Honestly, there is no harder job than tangling with endless red tape trying to advocate for the people you care about. That can be absolutely crazy making.

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  10. First of all, I think it’s great that you are advocating for your children and not just letting everything flow. They need that. Secondly, how can a nurse think that she has more say over a child’s way of doing things, than the child’s mother does? Oh no. That would never work. I’m sorry that it’s been so difficult to get your son an aid. I guess we are really blessed here, as my son’s school has always readily supplied aids throughout all his classes. He too is set to graduate right before his 21st birthday. Anyway… Keep up the awesome parenting! Your sons are lucky to have you.

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    • I’m not sure where exactly the nurse thinks she’s getting off, but something will be done. Glad you’ve had a good experience with schooling – it’s inspiring to know that somewhere out there kids are getting what they need. Thanks so much for your encouragement, my dear. πŸ™‚

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  11. The solution is, be born with enough native intelligence to figure out how to deal with the paper chase, or hand off the job to a lawyer, if you can afford it. Then again, if you can afford a lawyer you probably won’t qualify for aid. I wonder if there are paralegals that offer free legal aid in your community?

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  12. It’s okay to say yes to help, Linda. While you might feel like you’d be depriving others, getting your case handled faster will help clear the way for other people to get their cases heard. Bureaucracies are intentionally difficult to navigate, and you have the patience of a saint for sticking with things.

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    • Ah, I do my best. Sometimes I admit I do drop the ball though. It’s such a job. πŸ˜› You have a point about the handling of things. I’ll take that into consideration next time. Thanks, my dear. πŸ™‚

      Liked by 1 person

  13. “Care givers,” in the public arena, sometimes don’t do either. I admire you in your quest for those that do.

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  14. You have a lot on your plate, Linda. Good thing (for both you and your family) that you are a fighter.

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  15. We went through everything you’ve stated years ago. We refused the cookie swallow test, without the test they can’t say that he’s incapable of eating and swallowing. In his day program last year they tried to push the issue again, our response was that he’s 32, if he hasn’t aspirated yet, he’s not going to.

    Out best fight was when he was 6 and we were trying to get him into the local blind school. We had a doctors evaluation that he was legally blind (>400). The school district said had to be evaluated by their school psychologist (?). She spent five minutes with us then made the pronouncement, “he doesn’t act blind.” Sorry, he has his wheelchair today, we left the cane at home. Bottom line, they didn’t want to pay for specialty school, but weren’t set up to handle a multidisciplinary child, so they would put him in a separate room with a special Ed teacher and the two would vegetate for the day. We happened to luck out, it was an election year and the governor was in town for a fundraiser, we cornered him and brought up our issue in front of the media, next day we got a call from the school district that his request had been approved and could we please come in to sign the paperwork.

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    • Wow. That’s championship advocating. Good for you!
      My son has aspirated once and that’s the problem. He has to be supervised so that he’s not eating what he shouldn’t – and there is someone there to watch him – so I have no idea what the nurse’s problem is.
      Thanks so much for sharing your story. It’s inspiring to know it’s possible to get things done. πŸ™‚

      Liked by 1 person

  16. I worry about the families who don’t have friends or loved ones that are literate, computer savvy or other things that are taken for granted when it comes to getting help for the physically and/or mentally ill, elderly, etc.

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