disability services

I am so! SUPER! EXCITED!!!! I was just offered a position at my old school as an interpreter for a blind student. Not only do I get to go through the core program (I went to a different school for my core program, I just did the advanced program there) but I’m going to get paid for it! And have this really amazing experience of getting to work with someone that experiences the world in a completely different way. Luckily, my uncle is visiting and he acts as a driver for a friend of his that’s blind and I can get advice from him on how to do stuff.

BUT ANYWAY. Tumblr, this is where you come in. I’ve been doing some research, but I’m pretty lost. I’m trying to find grants and scholarships that he can apply to so that the school can cover the cost of my wages. If you can shove me in any directions, please help a girl out?

You can tell a lot about a DD agency by how they treat their disabled employees.

There are only a few developmental disability agencies in the area. In California, there’s tons of agencies. Here, I only know of the in my local area. I only have experience with two. Both of them employ some people with developmental disabilities.  But they couldn’t possibly do it more differently. 


Walking into one office, I saw a man with a developmental disability delivering the mail.  He had a staff person with him directing him where to go.  He clearly — very clearly, from the standpoint of someone with similar problems — had a movement disorder that made it hard for him to stop going in a direction once he’d started.  So he bumped into things and people a lot.  He bumped into me.
His staff person immediately started shouting at him and demanding that he apologize to me and pay more attention to where he was going and on and on and on.  He just stood there looking more and more upset.  I knew, and he knew, that there was nothing he could’ve done different.  And that was only one of many such incidents I saw there.  Disabled employees were not considered the same as nondisabled employees at all. 


Then I went into this other DD agency.  It was an agency that helped DD people with two things:  Self-directing our own care (something I was looking into), and finding gainful employment.  So maybe it made sense that they’d be different.  Or maybe not.  I don’t know.   


All I know is that every time I walked into the place, I saw a woman with a developmental disability answering the phones, typing at the computer, and doing all the work a secretary normally does, without any indication that she was any different from the nondisabled secretaries. 


That told me that this agency was serious about their mission to find employment for disabled people.  And also that they truly respected us.  They never talked down to me.  If I came in unexpectedly, they would drop everything and come talk to me about what I needed. 


I didn’t end up going self-managed with my care, although I still might do that someday.  But I have to say that I was incredibly impressed by the difference in the two agencies.  This isn’t the first time that I’ve seen such a difference between agencies, reflected in how they treat disabled employees.  And this all happened years and years ago. 

 
But I thought people should know that this is something you should look for, if you’re scoping out agencies to give you disability services:  If there are disabled employees, how are they treated?  Do they seem like just another employee, or are they treated like “clients” who just happen to be doing work (worse still if it’s “make-work”) in the office?  Do they get publicly humiliated if they make mistakes, including mistakes that they clearly can’t help making?  If they have a job coach or another staff person assisting them, does that person seem to be basically running their life, or are they providing assistance in a respectful way so that the person can do their job?  Is there constant tension in the air between the DD person and their job coach?  Does the job coach get on their case for things that aren’t even problems (like rocking, quietly humming, etc.) while nondisabled people get to be much louder, much more disruptive, and nobody treats them badly for it? 


It’s things like that that can tell you a lot about an agency without them even knowing what they’re showing you.

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Better living through robotics!

Currently available in Japan, will start to become elsewhere in next few years.

  • Power assist suits for manual labor to prevent back injury.
  • Power assist for walking that helps provide stabilization and reduce fatigue for people who can walk, but may not be able to rise from a seated position or walk for extended periods who might otherwise use a wheelchair
  • Bed that splits in half and converts to a wheelchair, so you don’t have to transfer between them.
  • lift assist robot for nursing homes that simply helps you rise and not lose balance and only provides assist if needed (helps reduce muscle atrophy, but keeps you safe from fall as well)
  • the heavy loader from ALIENS, for heavy industrial work and search and rescue.  

SOME of these have recently been approved for use in EU and US or are in process, so may soon be an option. The walk assistance one is also available from other manufacturers in slightly different design (HAL by Cyberdyne, I am not making that name up- also some US versions from military), so are most likely to become available and affordable first. 

Some of these are also designed for use by caregivers and nurses to make it easier and safer to care for people. You might also run into some of these if you’re doing physical therapy, where they can provide temporary assistance to recover faster with lower risk of re-injury.

Reminder that if you are in college/university and have Dyslexia PTSD ADHD OR other learning disability or disability that affects your day to day life GET YOUR BUTT OVER TO YOUR SCHOOL’S DISABILITY SERVICES!!! They can and will help it is not just for physical disabilities. They can help with tutors, provide a quiet space for exam writing, will help you work with your professors. Go talk to them!

Can anyone help Katerina?

I don’t have the ability to help other than using the fact that I have a lot of followers here and am well-known in certain segments of the Internet.  So if anyone at all is able to help a multiply disabled woman who’s had her services canceled and further services denied and abused through neglect and people have lied to Adult Protective Services and it’s a mess.

If anyone can help please go here:

http://textualfury.wordpress.com/2014/02/08/the-time-i-got-naked-on-the-internet-nsfw-and-trigger-warning/

TW, and NSFW, both apply to her post (at least the NSFW part applies to the naked YouTube video where she documents the damage to her body, some of which reminds me of the awful rashes I used to get before I got my breast reduction, so I can attest that those things are painful without treatment and sometimes even with it).

I used to talk to her years ago, she has a lot of similar issues to mine, and nobody deserves this but it hits harder when you know the person and please if anyone can help, please do.

Oh and sorry for spelling your name wrong but I can’t figure out the right spelling due to trying to do a lot of things at once right this minute.  Very sorry.

Don’t pay that registry fee!

There are many websites online that prey upon disabled people who want to obtain a service animal or an emotional support animal (ESA). Many of these websites call themselves “service animal registries” or something similar. They often offer to sell certificates or identification cards, as well as vests. While some of the services offered by these websites may be helpful on an individual basis, the truth is that they are scams.

Here are the facts:

  • There is no official service dog registry for the United States.
  • Service dogs do not require registration, certification, or identification of any kind.)
  • To qualify for a service animal, one must have a disability as defined by the ADA.
  • Service dogs must be trained to perform a specific task relating to the handler’s disability. The training may be done professionally or by the handler.
  • Emotional Support Animals do not have the same protections as Service Animals, but also do not require the same training. The only thing required for an ESA is a prescription from a qualified physician or psychiatrist.
  • Service animals do not require a special vest. These vests are optional and serve the purpose of notifying the public that the dog is on duty.
  • You should never have to pay extra fees associated with having a service animal or ESA. Any website that requires a fee is a corporate business at best, and a scam at worst.

Remember, no employee is allowed to ask you to provide proof of a disability. Unless your service animal is causing significant disturbance or is not housebroken, you cannot be asked to leave due to the animal’s presence (religious organizations are exempt). More information is available in the links below.

Frequently asked questions about service animals and the ADA

Partial list of scam sites

NPR article on the subject (audio available)

Holy fuck so...

…I was looking for a book about hiring live-in caregivers, but ended up with a book about being a live-in caregiver instead.  And the instructions for caring for seniors with dementia include the following gem:

Don’t give the person a chance to refuse.  Use positive language and encouragement.  For instance, do not say, “Would you like to eat?”  Instead say, “It’s time for lunch.”

Later, there’s this, as well (not dementia-specific, in a section about depression as a stage of grief in people with a chronic or terminal illness):

Third, insist that your loved one continue to participate in activities of daily living as long as he or she is still capable.  You may feel like a bully at first, but it’s perfectly possible to be both gentle and firm.  “Mom, push up with your legs when I lift you.  Otherwise, we might both fall and get hurt.”  Or, “Dad, I need you to shave yourself.   You know I always cut you when I try to shave you, so please help me out.”

That feeling of being a bully?  That’s your frigging conscience trying to say something.  Don’t let yourself be trained into ignoring that feeling.  Wow.  I’m just shocked this book is coming out and talking about ways to manipulate disabled people into doing what you want us to.  I’ve experienced both of the above and they both suck.

In particular, when my myasthenia gravis/adrenal insufficiency combo was so bad I could barely lift my head, I would have emergency room workers say things like “Oh come on and help me, I’m not going to lift you, you know!”  Like.. don’t they realize that it’s way easier for me if they don’t lift me, too, so like, if I could just get up and move I’d be doing it already?  And it’s got to be in my file at that point that I’m there for severe weakness in which I just fell down and couldn’t get off the floor, so……??  Yeah.  It’s humiliating to be subjected to that.

It’s also humiliating – even worse, really – when you can do something, but only with extreme pain and effort, and you have people trying to “encourage” you to push yourself hard enough to do that, when you know that pushing yourself is dangerous enough it could lead to Really Bad Things.  I had to fire a physical therapist at one point, in the hospital, because she thought that if two people could help me, screaming and crying the entire way from pain (and I don’t scream or cry as a result of pain very easily at all, most doctors consider me remarkably stoic), onto a bedside commode, and then get me back in bed, then I should be doing this, rather than using the bedpan.  I told them I’d use the bedpan until my body was good and ready to get up, at which point I would be thrilled to use the commode because bedpans suck.  

Of course this is the same hospital where when I became so weak I shit the bed, their worry was not “Why is this person so much weaker than sie should be for hir medical condition?” (which could’ve resulted in a diagnosis of adrenal insufficiency much earlier than I was actually diagnosed, if they’d checked into it seriously enough), their worry was “If sie thinks she can get away with shitting the bed, sie will never use a toilet again.”  I don’t understand what these people think is so appealing about bedpans or shitting the bed, that they imagine people would choose it if we had any other option that was viable and wouldn’t hurt us more.

Anyway, rant over, I just can’t believe this book has little sections on how to manipulate disabled people and not feel guilty about it.

Petty? Really?

Today, after a very unpleasant phone call, I was called petty – not once but three times – by a woman paid to handle the issues I was calling about.

And who knows, she may be right. Maybe my expectations are too high, but is it really too much to ask that I find my kitchen in the same condition when I get up as when I went to bed?


The biggest issue is them moving things around. In the home of someone who uses a wheelchair to get around, and who can’t just stand up or get on a stool to reach things that are too high, that’s a big no-no. I would have thought a lot of it is also common sense. Surely, if there’s one stack of plates of one kind, and another stack of plates of another kind, and you’re holding a plate of the first kind… surely you’d put it on the correct stack? But, no. It goes on top of the other stack, teetering away there ready to fall out and get smashed to smithereens. And I can’t clean it up.

Thankfully, that last bit hasn’t happened yet, but I’ve already got more than enough evidence that using a grabber/arm extender to reach things on the top shelves is a bad idea. Salt over the worktops and floor, anyone? So it’s really not a stretch to imagine the damage that moving these things can do.

But, apparently, that’s my problem. She didn’t even let me finish the sentence regarding the safety issue, but went right on to say, “I think you’re just being petty now. Really, Emma, you’re just being petty.” Well, excuse me for being concerned about the safety of myself and your carers.

The worst part? I wouldn’t have bothered calling if not for my support worker encouraging me not to put up with it. The best part? When said support took the phone and started asking for names and details. “Social services? Oh, um… I’ll see what we can do.”

I didn’t even get to bring up the third issue, because she was too busy calling me names. By the time she was done, I was shaking and in tears, but their records tell them that I can’t communicate well over the phone (or face to face, actually). The more I think about how I was just rail-roaded – bullied – the more furious I get.

Only, I also feel bad, because they’re all lovely women. Some of them don’t know the difference between light-hearted teasing and insults, but they all mean well. I’d just wish they'd think first.

clickability.com.au
Clickability: Australian disability service reviews
Clickability is an Australian disability service directory that features ratings and reviews from the people who actually use the services.

[Image: a blue-and-white Cip Art style picture of a city on the outside edge of a circle.]

An extensive disability services directory/review site for you lovely Aussies, searchable by disability and service type! 

Looks like it’s only in Victoria for now, but they have plans to expand :)

School

So I have to write a Test Accommodations sheet for my test coming up.

Basically I have test in separate room, so I can sign while I take the test. I have two tests that same day.

On my sheet I have the option of “Phone” or “Email” I have told them countless of times to email me when something comes up for change. Can you take a guess at what they decided to do? If you guessed correctly, they called me. Well, I have no idea wtf they said but it seemed urgent. Now I have to wait until my dad gets home so he can tell me what the voicemail said…

Another thing, my Disability Coordinator is fabulous! She faces me and does whatever she can to accommodate me. She actually emails me, not call me.

 But when it comes to the receptionists … oh god it’s a nightmare. Every single time I go in to Student Services to receptionist, they are soo quiet, face away from me. A few times when I was sitting in the waiting area, studying, one of the receptionist was trying to talk to me. I didn’t hear them until someone else told me “Receptionist 1 is trying to talk to you” I look up and I see like an annoyance face. Every single time that receptionist talks to me I don’t hear them at all. I ask to repeat then there’s the whole annoyance/impatient.

Every time I get an email notification I rush to read it, hoping that it’ll be from my case worker at Services for the Blind.  She is supposed to be back in the office today but who am I kidding, my phone calls and emails aren’t going to be answered, these people work until noon and then peace out for the rest of the afternoon.  I think I’m going to end up calling her boss again if I don’t here from her by tomorrow.

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Advice for New/Potential Service Dog Handlers

Hey everyone! New video…. I know it’s been a few months. Thank you everyone for your patience/support. I’ve been doing a LOT better lately and my hope is that I can keep this account more active now :)

Link to socialization chart: www.anythingpawsable.com/wp-content/uploads/2013/07/Socializing-Service-Dogs-in-Training-100-Plus-Things-to-Include.pdf

Link to ADA Cards: www.petjoyonline.com/service-dog-ada-cards-50-pack/?gclid=Cj0KEQjwnv27BRCmuZqMg_Ddmt0BEiQAgeY1lxfNofI8Gg6n2qsdfSpZ5Bea19zh0ltYtErAR_inXxQaAnLb8P8HAQ

Link to ADA SD Requirements: www.ada.gov/service_animals_2010.htm

Link to Frequently Asked Questions about Service Animals and the ADA: www.ada.gov/regs2010/service_animal_qa.pdf

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dragoncon.org
Disability Services at Dragon Con

Dragon Con supports equal-access and provides on-site assistance for anyone who has a disability. Please be sure to stop by the Disability Services table in the Sheraton if you need any assistance.

After attending Dragon Con for the first time last year (and my first con in quite a few years), I have been shocked by the dismal showing or even outright lack of disability services at other events. That’s how nice D*C’s services are, especially for such a huge event.

If you’re able, you can go through the regular registration line to pick up your con badge and then hit DS for your accommodations afterward, but if for whatever reason you’re not able to go through the crowds, long lines, and partial outdoor waiting (depending on when you get there) of registration, you can instead head inside to the bottom floor of the Sheraton and directly to Disability Services. If any staff tries to stop you for passing the line or going inside without a badge (no one even tried to hassle us last year, but just in case) let them know that that is where you are going and they’ll send you on your merry way, often with more precise directions of where to find DS. Remember to bring your postcard with you as DS will be processing & printing up your badge if you haven’t picked it up at the big registration line.

Once there, take a number and a seat, if needed (remember that seating is limited & this room will inherently have a much higher concentration of fellow disabled people, so if standing isn’t a problem for you or you brought your own, try to leave chairs for those who do need them), and a staff member will come over to discuss your accommodations with you when they get to your number.

Now, I was nervous going into this the first time, but don’t worry: this is not meant to be a high-stress ‘prove how disabled you are’ interaction. They didn’t ask what illnesses I have or demand medical proof, which is a big deal for someone like me (young, relatively healthy-looking, with an invisible illness & invisible-unless-I-get-my-cane-out-or-am-actively-fainting disability) - they just ask what reasonable accommodations you need in order to enjoy the con. Depending on your particular disabilities and needs, they’ll apply a sticker to the front of your badge for other staff to see, along with a sticker on the back with any important information that you wish to include, such as allergies or diagnosis for emergency responders or an emergency contact person.

The badge stickers are important and are one of my favorite parts of their system, personally: at one point last year, I had a free forty-five minutes to people watch while I waited to meet up with friends, so I hobbled over to the disability reserved seats that can be found against the wall throughout much of Dragon Con. As I sat there, a staff member would periodically come by and ask everyone in the chairs to hold up their badges so they could see our accommodation sticker. Everyone without the necessary sticker (because, yes, other people obviously still sit in the disabled seats, despite the prominent 'reserved’ signs & handicapped symbols) were asked to move along or at least to sit on the floor, so that the chairs could be kept open for those who need them. Fifteen minutes later, the seats were starting to fill up again, and a staff member came by once more to clear them out. Rinse, repeat. I never so much as got a second glance from the staff, let alone a challenge as to my disability status - all they needed to see was that I’d been cleared by DS already and had every right to sit there :)

Read more on DCDS’s official wiki, such as where to rent electric scooters, more info on registration, how seating for large events is handled, etc.

Contact Dragon Con Disability Services at disabilityservices@dragoncon.org

TO BE VERY CLEAR

I am SO glad to be in the situation of “my school is forcing me to take an accommodation I’d rather not use because I don’t feel I need it” instead of “my school is denying me accommodations I need and am asking/begging for” 

like THAT is such a blessing and I am SO grateful

Meeting with the Disability Services Lady

I was able to schedule a meeting with the woman who approved my housing accommodation to discuss my disability services. I’m quite nervous but I’m definitely not going to hide it around her. I’m going to be as open as possible about my anxiety over moving and living on my own considering my conditions are scary on their own. Luckily, I scheduled it before orientation, that way we can talk about how I’m going to register for classes. I’m kinda excited but nervous. If any of you have suggestions, whether you have been in my place or not, I would gladly take them.