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This dairy was inspired by a fellow Kossack who wanted to know where to begin and how to get involved with advocacy in the disabled community. The best way for me to tell the story of how I unknowingly because a warrior mom is to tell it in part from the beginning...That moment many of you know, that moment when you, your child, your spouse, parent, anyone you know and love has just had the world as it was known rocked to its core by one word: Disability. Aside from the obvious, caring for immediate health needs, pushing yourself out from the dark place and pulling your heart out of throat, what happens next? What do you DO next?  This is the spot I was in nearly 23 years ago with my daughter. Shock over the diagnosis, shock over my world coming apart,  and I was alone in a small town. Then I met my mentor and she helped me find other parents like me, she helped me find programs to help my child and then she tasked me with the biggest challenge: share the information, find others like you.  And that’s how I began my life as an advocate for  my child, and the disabled community.

KosAbility is a community diary series posted at 5 PM ET every Sunday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.

This was long before the internet was the go to place for information, long before Google and Facebook. Long before I knew how to turn on a computer, let alone use one. Heck I thought I was all that and a bag of cookies because at the time I had a Brother typewriter with a built in word processor. Whoot!

 Back then I had 800 numbers and lots of postage stamps. My mailbox was a very busy place. My phone was a busy place. If there was one truth I knew it was this: Information is power. It’s the old GI Joe mantra: “Knowing is half the battle”.

At the back of a book about caring for a child with cerebral palsy, just past the index was a list of phone numbers for the big foundations. ARC, United Cerebral Palsy, Easter Seals, ERIC, NHIS, The PATH Project...I called all of them and I got catalogs of information and more numbers. I called those numbers and got more information. I found programs and I found names and players. I read everything I could get my hands on relating to disability services and funding. I talked to people about various doctors and disability suppliers, I was determined to figure out how to handle the plot twist in my child's life and make sure she was going to be okay. I hunted daily, capturing any bit of data I thought would help me. I was going to a support group meeting in Fort Worth at the time, but still pretty much so on my own living way out in the country in a small county.

I was one heck of an information hoarder. I had files of info, I had a Rolodex of names that was close to endless. I had contacts, I made more contacts, I collected information and I felt empowered. I worked hard to educate myself about the challenges my child faced, about Special Education, about funding sources and programs to help people with disabilities. I found my voice, I knew my rights, my child's rights. And that’s when my mentor, dear Emma, said it was time to start a parent information exchange or as it came to be known PIE.

It all started with a simple ad in the paper and my phone number. I really didn’t expect to hear from anyone. But I did. At my daughter’s school, I mentioned the possibility of a little get together. I really didn’t expect anyone to be interested. But they were. By the time the meeting came around I faced an overflowing room of parents who had  children with disabilities. And to think I had truly believed I was all alone in my rural area. Over the years that network grew into a number of support groups that are still functioning today. I don’t have as much direct contact with the groups now, but PIE lives on and parents are still helping each other.

This is not just about children. Adults can do the same thing. It’s all about finding people. Hit the internet, Google disability support groups in your area. Don’t want a support group, just info?--Hit Yahoo Groups, Facebook and a multitude of other special interest groups willing to help you find a starting point. In my town we have an ombudsman as the official face of disability issues for nursing homes, groups homes and home bound senior citizens. Find your officials, find your local advisory boards, talk to those people. Learn names, job descriptions, find out who is responsible for services you need, find out which issues are most likely to affect your life and your quality of life. Know where the discussion stands, know the players--Especially note congress members  serving on committees dealing with or related to disability issues and make your concerns known. Gather your information and then reach out. I take a great deal of pride in following the example of a certain community worker…One who knows the answer to solving our issues is to reach out to each other, empower each other and work together toward solutions.

I am not a person who likes to engage in adverse or militant actions.That said-- I do believe in protest, the earliest advocates of the disability movement  used peaceful protest all the time to bring attention their causes. I believe policy can be challenged and changed through many voices. Peaceful yes, but loud…very loud.  Over the years I’ve become convinced a group  or organization of people with disabilities or parents of children with disabilities is more likely to strike a chord with congressional critters than a lone voice. Use the media when you can--responsibly, of course, but make your concern and presence known.

The need to organize is growing. While Obamacare is the law of the land, disability advocates are anxious to see how Medicaid will be affected--The fear of block grant funding is less, but cuts to disability Medicaid is a real possibility.

The entire service delivery system needs to be coordinated more at the federal level and less at the state level. As it is, when a person moves from state to state, the money or services don't necessarily follow the person. The entire process of getting disability funding restarted begins almost from scratch. Some people lose the amount of funding they receive. More often than not, housing is not available or attendant help is on an as needed basis or worse a waiting list with ridiculous waiting times--sometimes many years.

Stay aware of the what's going on in the disability community. If you're on Facebook, like the page for Disability Scoop. Always great stories about the challenges and triumphs of people living with disabilities.

The bottom line--It’s all up to you. There is no right or wrong way to advocate. You can chose to tend to only your needs or you can reach into the community. Just bear one thing in mind, you don’t have to face the journey on your own unless you chose to do so. I remember the days when I felt alone and the words “cerebral palsy” were so big I was dwarfed by the size and implication of what they meant. I found strength and power in information and collaboration with others. I still do. You can too.

Nurse Kelley Sez: Here's a link to Chelsea's Magic Wheelchair, left over flower child's introduction to the soul of her activism.

Originally posted to KosAbility on Sun Nov 18, 2012 at 02:00 PM PST.

Also republished by Barriers and Bridges.

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Comment Preferences

  •  Want to write a KosAbility diary? (16+ / 0-)

    Upcoming Schedule

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    Dec  02  michelewln
    Dec  09  chicating
    Dec  16  CyberLady1
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    Nurse Kelley (KelleyRN2) is the moderator of KosAbility’s diaries and maintains the schedule. If you’d like to sign up for an open Sunday, reply to this comment, send me a private message, or email me at KelleyRN2[at]gmail[dot]com.


    Our Wednesday diaries are going on hiatus for now, Father J-M being overwhelmed with work at his new mission. We are extremely grateful to him for all his hard work here, and we look forward to seeing him in the threads.

    The content of the KosAbility diaries is important to many folk who depend on the exchange of information and ideas about their struggles with real life-changing conditions. The moderators of these diaries will not tolerate rude, disruptive, off topic, and/or threadjacking behavior. If in doubt, read our mission statement in the diary.

    "Do your little bit of good where you are; it is those little bits of good put together that overwhelm the world." ~ Desmond Tutu

    by KelleyRN2 on Sun Nov 18, 2012 at 02:00:59 PM PST

    •  (((Father John))) (7+ / 0-)

      Take care of yourself and don't over do it! I know there's a lot to get done, but there's something to be said for delegation as well. I hope you're feeling well and things are going as smoothly as possible for you.

      "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

      by FloridaSNMOM on Sun Nov 18, 2012 at 04:56:55 PM PST

      [ Parent ]

      •  Thank you, FSM. (6+ / 0-)

        I really hated giving up the Wednesday diaries, but it's a commitment I just can't keep right now.

        And you're right, delegation is key to the success of the venture and my own well being, and I am in the process of doing just that.  We've just been open two weeks, and before volunteers can shoulder any of the burden, they need to first undergo an extensive screening process including background checks, then a three-session course on abuse and exploitation training, and finally, training in the particular role they are taking on with us, some of which are pretty intense.  It can be from four to eight weeks from recruitment to full deployment of a new volunteer, depending on the complexity of their job and their background.

        In the meantime, it's me and an assistant, so I have been putting in some crazy hours.  My bookkeeper/office manager comes on board January 1, which will make a huge difference, and recruitment of other personnel is going well.  The burden is getting lighter.  

        So, I appreciate your kind words, and will remember your advice when I'm tempted to "just do it myself," when I might not have to.  For now, though, my mantra has got to be "git 'er done."

        For those interested in keeping tabs on the project, we have a Facebook page (the website won't be ready to go live for another week or so, at which time I'll share it as well.)

        Ad creandos magis et meliores democratas.
        h/t to codairem for correcting my dreadful Latin grammar.

        by jgilhousen on Sun Nov 18, 2012 at 06:36:34 PM PST

        [ Parent ]

  •  "We're here, we're weird, get used to it" (13+ / 0-)

    is one of my mottoes for LD advocacy (and other forms of advocacy too).

    We lose stigma by claiming and proclaiming our disability.

  •  Suzi, I don't know how you did it, (10+ / 0-)

    before the Internet. Good grief! How quickly we've come to take it for granted. It may be the greatest development of our lifetimes, imo.

    "Do your little bit of good where you are; it is those little bits of good put together that overwhelm the world." ~ Desmond Tutu

    by KelleyRN2 on Sun Nov 18, 2012 at 02:06:21 PM PST

  •  It ain't easy. (9+ / 0-)

    Our legal system makes unscientific assumptions about human behavior. Many kids with invisible disabilities end up in prison in this country.

    Parents have to fight like the Tasmanian Devil to get fair treatment for their kids and aging parents with disabilities.

    We have been involved in several law suits.

    look for my eSci diary series Thursday evening.

    by FishOutofWater on Sun Nov 18, 2012 at 02:12:36 PM PST

    •  No it is not easy it an all out hell cat fight (8+ / 0-)

      Even in a time when we consider ourselves to be so very enlightened I am amazed at the amount of ignorance regarding disability issues. Even the freaking SCOTUS doesn't get what the term "disability" means in practice and scope--Alito and Scalia in particular.

      In Texas we're fighting over guardianship laws right now and while we're making strides in getting the public to see how outrageous the idea is that your child is not your child as an adult unless you go to court and petition the court to allow to be your own child's guardian--Well there is now a professional guardianship agency that will take over----We have a long long ways to go

      Aisha Taylor on meeting Barack Obama..."He smells like cookies.....and freedom"

      by left over flower child on Sun Nov 18, 2012 at 02:21:20 PM PST

      [ Parent ]

      •  We set a precedent in NC for guardianship (6+ / 0-)

        My wife deserves all the credit. She took her case to the appellate level to be her mother's guardian. It set an important precedent.

        look for my eSci diary series Thursday evening.

        by FishOutofWater on Sun Nov 18, 2012 at 02:52:53 PM PST

        [ Parent ]

        •  I would love to more about that... (6+ / 0-)

          Here it's not only children, it's aging parents too. So I'm with you on that one. The most horrendous case I've heard so far was that of an elderly lady put in the professional guardianship program, while her children fought to regain guardianship. They got it, only to find the company had used the lady's savings and other income to fight the court case. Well over several millions of dollars. So it's back in court now.

          There are many very alarming quirks to the Texas procedures. But the one garnering the most concern are the secret hearings social workers for the Texas Department of Aging and Disability can use to literally strip parent so their custodial rights. Yes, you read that right--Secret. As in the parents find out well after the fact a judge has ruled to give guardianship to a private professional guardianship agency for whatever reason.

          Aisha Taylor on meeting Barack Obama..."He smells like cookies.....and freedom"

          by left over flower child on Sun Nov 18, 2012 at 04:08:50 PM PST

          [ Parent ]

  •  OT note: (9+ / 0-)

    I will holding an auction competition to raise money for the BC (British Columbia) Cancer Agency, the hospital that was my mom's home for her last two and a half months.

    The competition will be between the three communities I am a part of: The SCA, Bo Bice's Bo Peeps, and, of course, Daily Kos. I have been growing my hair to donate it to an organization that gives wigs to those who have lost their hair from medical treatment or disease. The winning community will be allowed to make the first cut of my hair, at an appropriate event next year. The competition will begin on December 6th (Mom's birthday), and conclude on December 17th (the first year anniversary of Mom's death).

    I look forward to seeing which group wins, to be able to give a lot of money to the BC Cancer, who made Mom's last days comfortable, and to being able to donate the hair to someone who needs it more than I do.


    Torture is ALWAYS wrong, no matter who is inflicting it on whom.

    by Chacounne on Sun Nov 18, 2012 at 02:32:55 PM PST

  •  I've been on many support groups (7+ / 0-)

    for parents of autistic kids, for special needs home schooling, etc. One thing I can say as well.... there are more incidences of DCFS investigations when kids have disabilities than not, unless every group has the majority of families who have been investigated. I have met hundreds of families on line, and I would estimate 8/10 of them have had some involvement. When you have a disabled child, your house isn't always perfect, because well, you have a disabled child that takes extra time and care. When you have a disabled child, you garner more attention and more people butting into how you raise your child, or assuming you are neglecting the child because they have the disability. Or they are on meds that cause weight gain or weight loss. Or they just 'act different'.

    I had one lady report me because I wear too much black. Seriously. That was the primary complaint. I must worship the devil because I wear too much black, oh, and my son didn't speak yet, so that was mentioned as well. Luckily the guy who did the investigation laughed off the first part, and when I showed him the tests and appointment schedule proving I was trying to find out why my son wasn't talking that one just went away.

    But they never go away really, that investigation is always on your record. And they build up, even if every single one is proven unfounded. They hold all those calls against you every time.

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Sun Nov 18, 2012 at 03:10:27 PM PST

    •  You can add me to your 8 out 10... (7+ / 0-)

      I was shocked beyond belief to open my door one day to a police officer and a CPS worker...I had been turned in for abusing my child. Why? Because she was in a standing frame used to keep her leg muscles strong and not going into an atrophy state.

      I know who it was, it was a nosy Jehovah Witness lady who wanted in my house. She saw Chelsea in the stand and wanted to know why I punishing that poor poor child by making her stand up and tied down.I explained it to her and she just flat out said I was lying. I blew it off and went about my business... OMG. A standing frame.

      A Giraffe Standing Frame....Take a look...She told the police we were using a modified wheelchair to punish our daughter.

      The CPS worker knew what was up right off the bat, the cop was ticked he had to come all the way out to our house for nothing.

      And you're very much right about it staying on your record. We were told the report would disappear at the end of six months because it was unfounded...It came up during the hearing for our daughter's guardianship. 15 year old record at that time...

      Aisha Taylor on meeting Barack Obama..."He smells like cookies.....and freedom"

      by left over flower child on Sun Nov 18, 2012 at 03:33:34 PM PST

      [ Parent ]

      •  Standing frames.. (6+ / 0-)

        are good things, they not only keep muscles from atrophy, but they promote natural digestion and healthy breathing as well. My other half is wondering if Medicare will pay for one. Medicaid wouldn't as an adult who has CP. They didn't want to pay for the manual he needs either, he can't push a standard because the wheel placement is wrong and it pulls his shoulders out. But they said they wouldn't pay for a Quickie after 21 since he has been disabled since birth. I guess that last Quickie is supposed to last for the next 40-60 years.

        "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

        by FloridaSNMOM on Sun Nov 18, 2012 at 03:48:42 PM PST

        [ Parent ]

        •  Medicaid paid for that one... (6+ / 0-)

          But in all fairness I do have a friend in the medical supply business (one of those many contacts I made way back when) and he helped up navigate the nightmare funding paperwork to get the standing frame.

          The funding for a new Quickie is one of the things we--as in advocates nationwide are worried about at present. It is already so very difficult to find funding for new equipment, how much harder will it be when cuts are made? We still don't have a clear picture of what Obamacare will do for equipment since it is making up a lot of the program's funding shortfall through streamlining equipment and medical supply spending. Not that I don't agree that there has been a huge abuse of the current system--there has been. Those nifty scooters everyone talks about? The requirements for those are so loose there's no telling how many of them were sold to folks who really didn't need them or want them. While I think there needs to be a little more oversight and accountability, I worry there will be a knee jerk response and the rules will be impossible to manage thereby making it even more difficult to get durable medical supplies.

          Aisha Taylor on meeting Barack Obama..."He smells like cookies.....and freedom"

          by left over flower child on Sun Nov 18, 2012 at 04:02:58 PM PST

          [ Parent ]

          •  Oh if he were a kid they'd pay for it. (6+ / 0-)

            but he's 39. They don't want to pay for new durable equipment now. When he was a kid he stood better than he does now. Now he has arthritis in both knees and hips, weighs more, and his balance has gotten a lot worse (he's had to go back to a walker from a cane because of falls). Some of it is stress on his limbs and joints, some of it is the Dorsal Reisotomy when he had when he was 16. It lowered the spasticity as it was supposed to but it also lowered his muscle tone.

            I try to get him to do more ROM exercises, but he's stubborn.

            "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

            by FloridaSNMOM on Sun Nov 18, 2012 at 04:15:23 PM PST

            [ Parent ]

            •  Damn. I hate hearing that. (6+ / 0-)

              I hate it for both of you. So disheartening. I just got through a war and half with Medicaid to get Chelsea a new wheelchair. She was having a lot of issues breathing because she could not sit up--as in her posture in the chair was horrific because the cushion were worn out.

              Within the parent groups we have we noticed an uptick in denials for equipment. So we know funding is not going to be automatic for durable medical anymore.

              Our local special ed co-op was also noting how hard it is now to get Medicaid to cover some of the expense for therapy offered through the school. Not too long ago one of the ways schools paid for various was to tap Medicaid for those students on SSI, now it's not as simple as that. It was meant to serve as a way to expand what little funding IDEA gets. Not so easy now. On a side note, a few of the schools talked parents into giving the school private insurance information and then tried to have services provided through the insurance companies. Talk about an ugly fight when the parents found out what had happened.

              Aisha Taylor on meeting Barack Obama..."He smells like cookies.....and freedom"

              by left over flower child on Sun Nov 18, 2012 at 04:35:27 PM PST

              [ Parent ]

  •  Thank you, flower child (9+ / 0-)

    I'm not gonna say you're leftover...

    I remember growing up in a time when advocacy for the handicapped was minimal. When my mother, along about 1952, consulted a big-city child psychologist about integrating me into the "normal" world, the reply was that it was "entirely natural" for people like me to be "shunned by society" so there was nothing to be done.

    We were pretty much on our own, in a small town with minimal facilities, like yours, and I still don't know how my mother pulled everything together, but she did. Reading your post helps me to appreciate her more--and also to appreciate how far we've come. I hope that Texas conservatives don't really haul us back to the 1950's.

    •  Wow I can only imagine the struggles you and your (7+ / 0-)

      mother faced back then. It was certainly a different world with very little flexibility for anyone with a disability challenge. I would love to know about the changes you've witnessed and if those changes have impacted your life--If it's not too impertinent to do so. If it it is, I do apologize, I'm forever amazed and grateful for those who know about the disability movement first hand.

      As to the leftover part...That was a running joke between my very conservative father and me. I was pretty much a chip off the old block before I went to college. I believed in the conservative party because that's all I had been exposed to growing up. Then the evil liberal world of the higher education captured me--after that I began to challenge my father. One day in sheer exasperation he said. "Susan how is that I wound with the only left over flower child in the state of North Carolina?!!" Hence the screen handle was born. :o) And it remains a family nickname lol..They're still all very conservative and I'm still the fighting flower child!

      Aisha Taylor on meeting Barack Obama..."He smells like cookies.....and freedom"

      by left over flower child on Sun Nov 18, 2012 at 03:52:40 PM PST

      [ Parent ]

  •  Great diary (5+ / 0-)

    The funding issue looms large in our nightmares as well.  Our daughter is only 5, so we anticipate being in the system for many many years.  But even over this short period of time we've seen countless (and seemingly random) changes to how requests for equipment and services are treated.  We've been fortunate so far, but it's not hard to see a future where that will end.

    We're breathing a tiny bit easier (just a little!) now that the election is over. Not so much because of Obamacare's survival at the national level, but because our new Governor-elect has a son with cerebral palsy.  I am so hopeful this will make her extremely aware of any issues affecting disability and disability funding.

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