Tag Archives | safety issues

Disability and Emergency Preparedness: Some Thoughts

emergency preparednessI have a friend who actually does a lot of work in the emergency preparedness area, and who has been a part of the teams assisting people with disabilities in emergencies infinitely more serious than the one I encountered last night. But a night in the dark in my apartment building was definitely enough to make me think about emergency preparedness and about how much more vulnerable people with disabilities and chronic health conditions are in emergency situations…including myself, because my emergency preparedness plan simply isn’t good enough.

Emergencies in My Apartment Building

Due to the demographics in my area and the nature of my apartment building, most of the residents are seniors. Some are in very good health and, like me, require very little support to live in the building. Some aren’t in such good health, and rely on a lot of medical home supports and other community supports and/or support from family and friends to remain living independently.  The management helps as much as they can by making sure that people sure that have lots of notice for events like maintenance work in the building and community (including planned power outages that are going to last for several hours) to make plans.

Of course, not every power outage is planned. But  the unplanned ones rarely last long. Our hydro crews, for all our complaining, are very good at getting things back on track quickly. However, whatever knocked out our power last night did an especially good job – it was out from 8 pm last night to 4:30 am this morning.

Emergency Preparedness – I Need a Better Plan

My normal emergency preparedness plan for a situation like last night’s is to read until it gets too dark and then go to sleep until the power comes back on. But this time I was acutely aware of a few things:

  • I’d been on the phone long-distance with a friend who was possibly going to be worried that I’d suddenly disappeared. I don’t have a cel phone. I couldn’t email her, because my modem was, of course, not working. I couldn’t even call her if I could track down a phone that worked, because her number was trapped in *my* phone, and I wasn’t sure I had it written down anywhere else.
  • Going to my father’s was out of the question – how was I going to call him?  I’ve only been without a cel phone for about a year, and feeling as cut off as I did last night was absolutely unnerving.
  • I couldn’t find my flashlight and it was getting dark.
I ventured out into the lounge after a bit to see if anyone was around who’d heard anything about when the power was coming back on. I was able to use someone’s cel phone to leave my father a message with my friend’s email address, asking him to email her and let her know that I was okay. And I realized that other people were having emergency preparedness issues too.

Emergency Preparedness – When Things are Unplanned

A woman sitting in the lounge had come down earlier in the elevator to visit with friends. She was now stuck in the lounge until her daughter could get over there (and she wasn’t sure when that was going to be) to help her get herself and her oxygen tank back up the dark stairs.
As I talked to her, I found myself starting to wonder about other people in the building with health problems, and what their emergency preparedness plans were. We knew by now that it would be a while before the crews could get the power on. What if it stretched into tomorrow? I knew that the management would bring by bottled water for drinking, but people would need to start flushing toilets…the nurses would need water for medical treatments…without the elevator in service, some people wouldn’t be able to get out of the building…as I continued to think, I got more and more anxious about the prospect of prolonged power shortage.
In my own apartment a bit later, there was still enough light that I easily changed my clothes and went to bed. But when the cats got me up later in the night for food (I don’t know how much later because my digital clocks weren’t working and my IPod wasn’t charged), I had the treat of trying to navigate my apartment with no light at all. Not safe. Not smart of me, to misplace my flashlight.

Important Things to Consider

How would I have handled all this a few years ago, when I was considerably less mobile?  I don’t know that I even have a first aid kit if I fell now and hurt myself…

How would I have handled this if I’d had an intellectual disability and my support person wasn’t coming in until morning?
If you’re supporting people in these situations, you need to consider if you/your agency has an adequate, understandable (for you/staff and for the person) plan in place for each individual.  Don’t wait until it happens and try to cobble something together then.
And…what’s *your* emergency plan? Is your level of emergency preparedness acceptable?
Canadian Red Cross article on Emergency Preparedness kits: http://www.redcross.ca/article.asp?id=33847&tid=001
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A Rant for a Thursday: Telemarketing

It’s time to check whether I actually am on Ontario’s “no call” list that’s telemarketingtheoretically supposed to keep most telemarketing firms from calling me. I’ve also started wondering about whether some other people that need to be on that list actually are.

My Stance on Telemarketing

I can see on my phone who’s calling, and I don’t answer calls that look like they’re from telemarketers. I figure that if it’s a call legitimately directed to me, they can leave a message. But sometimes I slip and grabbed the phone without looking at the number, or I answer because I get tired of seeing the same number over and over and over again. I hang up on automated pitches right away. If I get a live person, I listen to the initial pitch. Then I politely tell them “No thank you” (unless it’s a charity to which I’d like to donate), and I hang up.

Unless they’ve been really aggressive, or are calling me about something about which I’ve already gotten multiple phone calls, I try not to be rude. This is only a person trying to make a living. I always knew I’d be terrible at telemarketing, so I’ve never applied for those jobs, but there have been times when I’ve needed a job badly enough to consider it. I’ve got nothing against people reading a script and getting paid for it.

My Stance on the Current Climate of Telemarketing

I *do* have something against how aggressive those scripts have gotten. Even many charities hire telemarketing firms to solicit donations because they are, of course, very effective. When I get a call from a telemarketing firm on behalf of a charitable agency, frequently I can identify what sales technique is being used on me and sometimes I still end up giving a small amount of money that I didn’t intend to at the beginning of the call.

If I can cave to that kind of pressure, others easily can as well. When I’m short on money and I really can’t afford to give, I don’t. But not everyone can recognize that a telemarketer isn’t going to ask, “And can you afford this?” before suggesting an amount that they’d “love to see you give”. Too many of the people I’ve supported in the past assume that all people are looking out for their best interest. And, bless them, they’re easily confused. They’re targets.

Small Blessings

Mind you, I don’t imagine that many of them have the access that I do to a credit card, that the money will “disappear” before they hang up the phone, and they may change their mind about a cheque by donation by the time the mailing materials arrive. I know that I often talked with people about how they shouldn’t give money to anyone just because they asked for it. I suggested that they talk any request like that over with someone they trusted before making a decision.

And it’s not my business anyway if someone I supported want to respond to a telemarketing call by donating money, except for my concerns that current telemarketing techniques make it very difficult for anyone to say “no” to donating…and anyone on the Ontario Disability Income Support Program by definition has an extremely limited income.

What to Do About Aggressive Telemarketing

I don’t know what the solution is. When I first noticed charities starting to get really aggressive with their telemarketing, I actually spoke with an employee at an agency about my concerns that people who didn’t understand to what they were agreeing or didn’t have the confidence to stand their ground with a “No” or a hang-up were particularly vulnerable. It was from this discussion that I learned that telemarketing firms are doing more and more work for charities.

If you’re supporting someone with an intellectual disability that you believe may be vulnerable to this sort of aggressive marketing (seniors, for a variety of reasons, may also be vulnerable), investigate whether there’s a “no call” list in your area and what it covers. Other suggestions to deal with telemarketing:

  • Encourage them to get a phone that shows the number of who’s calling and to adopt a rule of “I don’t answer calls from numbers that I don’t recognize.”
  • Encourage them to get an answering machine to pick up any legitimate calls that they don’t pick up.
  • Encourage them to say “No” to any requests for money that they get over the phone. Explain that if they’d like to donate money to a cause or purchase something, there are other ways to do it; they haven’t lost their chance.
  • Include in the “Saying No” discussion that if someone won’t stop asking for money when they say “No”, they should hang up immediately.

Credit Where It’s Due

All that being said…

Once, after explaining to what seemed like the umpteenth telemarketing employee that week that I didn’t have a job and couldn’t afford to give that year (and getting ready to repeat the speech before he suggested that I just reduce the amount that I generally give), I got this response:

“Sorry to hear that, ma’am. We’ll catch you next time around. Good luck.”

I wish I could remember which charity he was calling for…

Oh, and please don’t tell me I’m a sucker…I know it already. 😉

How do you deal with telemarketers?

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My Inevitable Post About Daniel Tosh

Because You Know That I Couldn’t Stay Quiet On This OneDaniel Tosh

Oh goody, another comedian to avoid. For those that haven’t heard, Daniel Tosh is in the media spotlight this week over a controversy involving rape jokes in his recent appearance at the Laugh Factory in Los Angeles. Tumblr blogger “cookies for breakfast” posted an account of a woman who was at Daniel Tosh’s show:

“So Tosh then starts making some very generalizing, declarative statements about rape jokes always being funny, how can a rape joke not be funny, rape is hilarious, etc. I don’t know why he was so repetitive about it but I felt provoked because I, for one, DON’T find them funny and never have. So I didnt appreciate Daniel Tosh (or anyone!) telling me I should find them funny. So I yelled out, “Actually, rape jokes are never funny!”

I did it because, even though being “disruptive” is against my nature, I felt that sitting there and saying nothing, or leaving quietly, would have been against my values as a person and as a woman. I don’t sit there while someone tells me how I should feel about something as profound and damaging as rape.

After I called out to him, Tosh paused for a moment. Then, he says, ‘Wouldn’t it be funny if that girl got raped by like, 5 guys right now? Like right now? What if a bunch of guys just raped her…'”

Read the woman’s full account here:  http://breakfastcookie.tumblr.com/post/26879625651/so-a-girl-walks-into-a-comedy-club

The club owner says that it went down differently than the woman claims http://www.boston.com/ae/tv/blog/2012/07/daniel_tosh_apo.html, and Daniel Tosh claims “context misquotes” in his tweeted apology. But the incident has ignited an intense debate between two powerful groups: those who believe that comedy can be about anything, and those that jokes like the ones that Daniel Tosh told have no place in comedy.

Damn Daniel Tosh for Complicating My Life

I had no idea who Daniel Tosh was until the day before yesterday. I’d never heard his comedy. I saw link about this story and was pretty disgusted when I read it, and I’ve tried several times to get my thoughts together on the issue and get them down here. Because this has disturbed me as a feminist, as a woman with disabilities, as someone who’s worked with women with disabilities…not to mention as someone who knows many women who have been raped, and as an aunt to a beautiful niece who will be celebrating her first birthday in just over a month.

Debates of this nature come up every time comedians use a slur like “retard” in a routine. I thought I knew how I felt – that if comedians are willing to make one vulnerable group a target, then they should have the integrity to be willing to make any vulnerable group a target, and I can always walk away if I don’t like it (which I do. I don’t like comedy that makes targets of people).

This seems different somehow, though, and I haven’t quite worked out why yet. I do know that with the sexual assault rates for women in general, and women with disabilities in particular, so high (and the rates for men likely higher than they are because of under-reporting), I’m very uncomfortable with any comedian inciting group rape as part of his routine. I feel very off-balance; this really threw my beliefs about the “shoulds” and “shouldn’ts” of comedy, and my ideas of from what I’m prepared to just walk away with a “Oh well, I don’t have to listen to it. Just be fair, if you’re going to be mean.”

I still need to do some more thinking. But I really, really like this woman’s perspective:


What side do you come down on? Is there “nothing sacred” in comedy, or should some things just not be joked about?

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More on New York State Group Homes

In case anyone needs a review on what’s been happening with New York State group homes for people with developmental disabilities:

http://www.girlwiththecane.com/new_york_state group_homes/

New York State Group Homes in “The New York Times”

The latest article in the “Abused and Used” series in chronicling the abuse in New York State group homes appeared in “The New York Times” just before New Year’s. The article focuses on one of the operators: Federation of Multicultural Operators of Brooklyn. The full text of the article is here:

http://www.nytimes.com/2011/12/28/nyregion/operator-of-ny-group-homes-thrived-despite-lapses-in-care.html?_r=2&adxnnl=1&adxnnlx=1325176919- Nhrsh5AFVgD828ev1jiW6w.

The financial history and hiring practices alone of the Federation are shocking enough. But the 27 citations for failing to meet health and safety standards in Federation’s Intermediate Care Facilities (all issued between 2006 and 2010) would be, one would think enough to make New York State want to sever ties with this operator. C.E.O. Danny King, who is a retired police officer with no experience in the developmental services field before starting work with the Federation, doesn’t seem concerned, according to the “Times”.

Just an Observation

Working in the developmental services field, I’ve noticed that we’re learning as we go along.  We thought that institutionalizing people with intellectual disabilities was the best thing for them for a while. Now we don’t. Now we’re becoming aware that even the best of community residential options brings up issues around rights and safety and how people in staffed homes should be interacting with the people they support. In the almost twenty years that I’ve been involved withNew York state group homes agencies that support people with disabilities, I’ve seen ways of thinking come into favour and fall out of favour and settle in the middle and then move toward one side again.

I’m okay with working in a field where there a lot of “grey areas” and issues that need to be worked out. I don’t tend to think in absolutes, and I’ve got a lot of patience. However…

No Patience or “Grey Areas” for New York State Group Homes

I do not see grey areas, and I have no patience, when it comes to people who violate the safety of vulnerable people and of animals.  Abused kids need to go to a safe place and parents should  have to go through a long, comprehensive rehabilitation process before they get them back (if it’s ever appropriate).  People who abuse animals shouldn’t be allowed to own pets.

And a service provider that receives 27 citations within 4 years for safety violations within housing (including the Federation’s failure to investigate abuse, inadequate medical care, and medication errors), should simply not be allowed operate New York state group homes. Period.

The article says that this all started four decades ago with the state’s decision to stop institutionalizing people with disabilities and a the lack of an oversight agency that could do proper and timely inspections of the group homes that people ended up in. Forty years is a long time not to have learned as they’ve gone along with this.  Particularly as the first small public group homes became multi-million corporations like the Federation, one would think that the state would have seen the need to put proper oversight and inspection procedures in place.

It makes me wonder, again, about how much society really values people with disabilities.

I keep seeing evidence that it doesn’t, and that makes me sad.

See the archive for the “Abused and Used” series about the New York state group homes situation here:


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Sex and Disability, and a New Book

Sex and disability can be a complicated business, but a new book has just been released that will hopefully help those with questions.

Intellectual Disability and Sexuality

I’ve written before about the widespread (and completely erroneous) assumption that adults with intellectual disabilities don’t have sex drives and therefore don’t need education about sex, sexuality, and sexual safety. http://www.girlwiththecane.com/wp-admin/post.php?post=161&action=edit

It’s not only erroneous, but completely unfair.  People with intellectual disabilities have the right to be in relationships and, when the time is right for both, to express physical love for each other. They may need counseling for longer periods about the potential consequences of decisions of sexual activity…but then again, plenty of people go off and have sex, presumably having gone through sex education in high school, still believing things like “Women can’t get pregnant the first time they have sex”.   *Everyone*, people with intellectual disabilities included, needs good, quality sexual education.

But, we already know that I have strong feelings on that. And I’ve certainly thought about sexuality issues for people with physical disabilities – but issues for people with intellectual disabilities have always dominated, because of the work that I do. Until recently, after some conversations with some women with physical disabilities. And then I saw the news about this book on Twitter, which made me think even more.

This blog is about how pleased I was to see that a book about sex has been written for people with all sorts of disabilities.



“The Ultimate Guide to Sex and Disability”: For All of Us Who Live With Disabilities, Chronic Pain, and Illness”

Because, like accessibility issues, most people just don’t think about how a physical disability and/or illness and/or chronic pain would affect their sex life until it becomes an issue. And there simply aren’t enough resources out there to help people navigate sex and disability, given that sex is such a difficult issue for so many people to talk about to begin with.

With so many professionals saying that sexuality is such an important part of our make-up, there’s no way that this part of life should just be expected to end because of a disability or illness or chronic pain. Sex and disability should be able to co-exist. I’m happy to see that “The Ultimate Guide to Sex and Disability” has been published. I hope that it helps people  to discuss issues around disability and sexuality with partners, medical staff, and care providers, and that the people they talk with will be open to hearing the information that the book presents. Open, non-judgmental dialogue about this subject is very important.

I may even buy “The Ultimate Guide to Sex and Disability” myself…learning is always a good thing, right?



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The New York State Group Homes Situation

I found an awesome commentary on the New York Time’s “Abused and Used” series that I thinkNew York State group homes should be required reading for everyone. I think that you can get the message without having read the articles, but for those who like a bit of backstory: The “Abused and Used” series examines a review that the New York Times did on some previously unreleased data about the mortality rates in New York State group homes for people with intellectual disabilities. The Times found that in the last decade, 1200 deaths have in state and privately-run New York State group homes have been attributed to unnatural or unknown causes – that’s 1 in 6. And that number is the start of a story of abuse reports, poorly-trained workers, lack of safety protocols (and little or no review of safety protocols when a death happens) and little accountability for residents’ safety in New York State group homes that just made me feel sick.


What the New York State Group Homes Situation Tells Us

There’s obviously something in our society that’s still very apathetic toward people with disabilities, or the situation in New York State group homes would not have happened – some governing body would have seen what was happening and snapped to attention long before it got to this point. I like Zoe Wool’s take on it (this is the required reading I was talking about earlier):


The problem is (and the family of  one the residents who died also said this; see link to article in the first section) is that we don’t value people with disabilities in our society. Wool suggests it’s because we value people with disabilities relative to what kind of contribution they make (or made), rather than on their inherent personhood, to the point it determines how we speak about them.

Or whether we try to assist them to have a life or,  just try to keep them alive.

That sort of difference shouldn’t exist. Everyone with a disability should have access to the resources that they need to not only live safely and with dignity, but to have equal access to the community and opportunities to build the life that they desire that people without disabilities do. We don’t need further inequality lines within the disability community itself.

What to Do?

This is why we have to whole-heartedly support efforts by people such as Nicky Clark to stomp out disability hate speech. Because when you can call people with disabilities disgusting names, it’s not that much further to believing it’s okay to do things like slack off on those boring, inconvenient little things that you have to do in your job to keep them safe (like make sure food is cut up small enough so they won’t choke and then actually stick around to see that they don’t choke while they’re eating; see link to article in the first section), and just a bit further to justifying withholding food. I don’t know how people get to the point where they physically and/or sexually abuse residents, but apparently plenty of both was going on as well, rarely reported to police, and dealt with internally by moving the abusing staff to another home where they would abuse again.


And I don’t know why people like this even want to work in group homes, or how they get past the interview process, but obviously in the New York State group homes a whole lot of them did…and now we’re seeing what happens when they get shuffled from house to house instead of fired and when the system doesn’t have enough safeguards to make sure the damage they do doesn’t happen again.

It makes me wonder how many other states this sort of thing is happening in… :(

Archive of the “Abused and Used” series about New York State group homes:


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To NVCI or not to NVCI, Part 2

Just to remind people…

DISCLAIMER:  I’m not in any way affiliated with the Crisis Prevention Institute or any of the training that it offers. I obviously have some strong opinions about the CPI’s Non-Violent Crisis Intervention (NVCI) training, but they are my own.

NVCI Holds

I’d like to continue the discussion of NVCI training that I started yesterday by talking about NVCI holds, or bodily restraints. You’ve likely seen variations on them in movies, but the NVCI holds are generally less dramatic. They are used are used as a last resort, constantly monitoring the person in the hold, and only until the person has indicated that they’ve regained physical control.

I’ve never had to use an NVCI hold on anybody. I was lucky that I didn’t have to in any context before my stroke, and after my stroke using NVCI holds wasn’t an option for me. Like the teacher in the Facebook conversation that I talked about in yesterday’s post, I really hope that, even if I got to a point where I could safely use a NVCI hold, I never have to.

NVCI Holds and Inaccurate Connotations

When I hear the word ”hold” in the context that we learn in NVCI training, I think “restraint”, and I think of being tied to the bed in the hospital (See the blog entries entitled “Finger Spelling” and “Finger Spelling, Part 2” for the story about my restraint experiences). The NVCI holds are bodily, with a focus on comfort and safety for the person, but they are still restraints, and they still conjure up the image of restraint for me.

But I was not a person who should have been put in a restraint, according to the NVCI guidelines around restraint.I wasn’t out of control. I wasn’t at risk of putting myself or others at harm. When a person has genuinely reached that stage, when they’re no longer in control of their actions and they’re at risk of putting themselves or other people in danger (and agencies should have criteria even beyond that for whether or not use of a NVCI hold or any other restraint is appropriate in a given situation), it’s not a nice feeling for the person. No one likes being at that point. A NVCI hold, done properly, (which is physically safe for both the person or people doing it and the person who’s out of control) can bring about a measure of security that the out-of-control person needs to become calm. But NVCI holds are restraints, so they need to be used as last resorts.

And they need to be done safely, because the person or people doing doing the hold can also be hurt if it’s done the wrong way.

I remember a situation several years ago in an airport where I believe a man died after being tasered by police. It astounds me that despite having the capacity through NVCI training and CPI-sanctioned means to safely and effectively restrain (and move an individual in restraint), more agencies don’t opt to make that part of the protocol. If the police were close enough to taser, they were close enough to do a safe, effective restraint until, if necessary, a chemical restraint was made available. The man could have lived.

No one wants to see people restrained. But if it must be done, as the last resort, agencies should take advantage of training that will ensure that staff can do it safely.

To sum up:

1) Agencies should have safety for both clients and staff as a priority in all matters, including those involving potential violence from any source.

2) NVCI is much more than the holds.

3) The verbal and non-verbal NVCI intervention strategies are good for anyone to learn, should they get the chance.

4) There’s no reason why staff working in sectors where clients take unpredictable action shouldn’t be taught the means to safely, for them and for clients, deflect any violence aimed at them.

5) NVCI Holds should be a last resort and have agency policy surrounding their administration, but can be done safely and with a minimum of trauma for everyone when done according to NCVI guidelines.

Obviously this is something about which I have strong feelings. This is another area where we have to balance respecting rights, responsibilities, and needs of the people we support, and that brings out strong feelings with anyone in this field.

More about CPI and NVCI:  http://www.crisisprevention.com/

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To NVCI or not to NVCI…

I caught a Facebook conversation recently between two friends about the Crisis Prevention Institute’s Non-Violent Crisis Intervention training, or NVCI training (which, for those of you who don’t know, is training in de-escalating potentially…I’m going to say violent, because it can get to that point, with the understanding that I’m reluctant to because I don’t want to contribute to the idea that certain groups are inherently violent because of a diagnosis…situations in a way that’s safe for everyone.)

DISCLAIMER: I’m not involved with the Crisis Prevention Institute in any way, besides having taken NVCI training in the past. I don’t speak for them. The opinions in this blog post (and the next one) are my own.

There.  Now that we’ve got that out of the way. :)

Philosophically Against NVCI training

The school at which I received my training to work with people with intellectual and/or developmental disabilities wouldn’t do NVCI training with us. They may have changed their stance on it now that more and more agencies require it. But when I was a student, we were free to pursue the certification outside of school, but it wasn’t a training that they’d offer in-class due to the section on “holds” (physical restraint). Their philosophy was that they were against physical restraint in all circumstances, so they wouldn’t offer the training as part of the curriculum.  One of the friends involved in the Facebook discussion that I mentioned earlier was lamenting that teachers now have to have NVCI training and hoped that she’d never have to use a “hold” on a child. While I do understand both lines of thinking, I don’t know if they’re realistic for support workers today.

Being Pragmatic – Use the Tools

First, I would hope that any agency or government institution (a school or a hospital, for example) that does NVCI training with staff hopes too that the holds won’t ever be necessary. If staff has to use a hold on a client, then the most important parts of NVCI training, the parts that make up the bulk of the training, have failed, and a situation has gotten much more out of hand than it needed to be. Most of NVCI training is about learning to defuse anxiety in a person or a

Tools for defusing anxiety and frustration…

situation the moment it    manifests. Trainers teach  course participants  verbal and nonverbal  tools to de-escalate  situations where it looks  like a person has the  potential to behave in a  violent manner, before  the behaviour itself  begins. These strategies  are the most important  part of the course, and  I’ve used them even off of  the job site, just to  reduce another person’s  anxiety or frustration – a  lot of it is common sense  about working with people, not just people whose anxiety might move their behaviour to a level that becomes a concern.

However, when I’ve taken the NVCI training, it’s been in positions where I’ve been required to work with people who, for a variety of reasons, *are* prone to anxiety and frustration and who sometimes behave unpredictably. Sometimes it’s been a pattern that anxiety or frustration mounts because they have difficulty communicating and making their wishes known, or letting people know that something’s wrong.  Sometimes it’s been because of medical or hormonal problems. Sometimes it’s been because of mental conditions. And while I’ve been lucky enough this far in my career not to have been the object of violence, I know that it does happen.

Using What Keeps Everyone Safe, Given Certain Realities

My school and I disagreed vehemently on this, but I saw (still see) no reason why workers in the developmental services field should be required to absorb violence from people that they support. It may be on the worker that he or she didn’t catch a situation soon enough or do a good enough job of defusing it, but I’m not going to begrudge *anyone* instruction on how to safely (for both parties) deflect an assault because he or she is still learning good verbal/nonverbal conflict de-escalation skills.

The key there being *safety*. NVCI violence deflection skills, if they absolutely must be used (assuming they are used properly) keep both people safe. And for something like this, agencies should strive to make the safe way to deal with violence, for both people, the instinctive way of dealing with it.

More on this in the next post.

For more information on CPI and NVCI: http://www.crisisprevention.com/Resources/Knowledge-Base

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Internet and Youth with Intellectual Disabilities

This post goes out especially to parents of teens with intellectual disabilities.

A Whole New World: Facebook

This post came to mind because I’m doing a project on social media sites such as Facebook and Myspace for an agency right now, but I’ve long had concerns about these sites when it comes to users with intellectual disabilities. I’ve worked with youth with mild intellectual disabilities who have profiles on sites like Facebook and MySpace, and some of them manage it quite well: they know what information to make public and not to make public, they know all the people on their “friends list”, and they’ve had someone look at their profile and make sure that their security settings are such that only authorized people can see what they post.

More often, however, I was dismayed by what I’ve seen when I searched for (and easily found) their profiles on Facebook (I can’t really talk about MySpace, as I’ve never used it, but I’d imagine that the situation isn’t much different there). For most youth that ended up on Facebook, I could see what they and others had written on their “wall” without being a “friend”, indicating lax security settings. Some include personal information on their profiles. And Facebook, as a general social force, causes no end of trouble, because this demographic doesn’t generally have 1) the discernment skills to be able to determine, “I should not be talking to this person” and 2) sufficient knowledge and skills to get out of a situation that they can’t can’t handle when their discernment skills let them down.

Strategy and Preparation

Please don’t take that to mean that I don’t believe there’s a place for people with intellectual disabilities on Facebook.  I think that all social media applications present a marvelous opportunity for people with all sorts of disabilities to network, educate, and make new friends (see “My Name is Sarah” in the blogroll to read a delightful blog by a young woman with Down’s Syndrome, assisted by her mother). But safety has to be considered. I’m of the parenting school that believes that it’s okay to insist that you have your teen’s Facebook password, whether they have disabilities or not (up until 18, and I’d prefer that they agree to let me have it longer than that if they have an intellectual disability, but I can’t force them), but you’ll have to decide what you feel about that.

If you have a young person with an intellectual disability in your life who wants to be involved with Facebook, please do the following for their sake:

  1. If he’s in school, get in touch with his teachers. Find out what he’s learning about the internet and services like Facebook. Is he being taught about Internet safety? Is it being taught once and then the class moves on (information this important needs repetition and reminders).  What kind of internet services are the students signing up for in computer classes? Are the students blocked from accessing any services from school?
  2. Talk to your teen. Why does she want a Facebook account? Does she know what it means to use it responsibly?
  3.  If you don’t feel comfortable having his password, does he know that he should come to you if he comes across something that he can’t handle?
  4. Does she know about the Facebook features that she can use to deal with conflict with others?
Heck, have these conversations with *all* your children.  Social media is good for a lot of stuff…but it’s best to make sure that everyone is using it safely.
Have any parents of kids with disabilities out there had some experience, good or bad, with the internet?  What’s your number one concern? What’s your number one suggestion?  Someday I’d like to write some sort of curriculum that agencies could use to educate people with intellectual disabilities about internet safety, so I’m interested in hearing about peoples’ experiences…
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My Choice, Your Choice

Last night I watched a few minutes of “Hoarders” on The Learning Channel. I’ve seen the show before, and I generally avoid it; not being a terribly organized person, and a bit of a pack-rat (not a hoarder, but a pack-rat), it makes me feel just a little bit too anxious.

How Would YOU React?

 But coming off the heels of a recent discussion with a psychologist friend, I was  fascinated by the “hoarders” on last night’s show. Amanda has done work in a  number of areas on psychology (including work with people with intellectual  disabilities, which is the area in which I’d do my concentration in if I was a  psychologist). She doesn’t like “Hoarders” and the methodologies used in the  show at all. She said to the group of us that were talking the other night that  if we realized just how meaningful this “stuff” that looked like garbage to us  was to the people that hoarded it, and how traumatic it was to them to even  think about giving it up, let alone have people march in and forcibly take it from them, we’d look at the show much differently.

Last night, as I watched an elderly man yell at his daughters, “Well, God bless America! Thank God you two are able to think so clearly on behalf of your father!” as the rusted-out cars in his yard were towed away, I finally got it: Yes they didn’t function anymore. Yes, they were an eyesore. But they were his cars. Nobody understood why he was so attached to them…but he was.

And if someone tried to haul away something really important to me without my consent, I’d probably raise bloody hell too.

“Why Are You Acting That Way?”

It made me think about times when I’ve supported people with intellectual disabilities. Sometimes, no matter how well I think I know a person, he or she will put up a block to meeting a goal that absolutely baffles me. The person could be making great progress, moving really quickly – and we hit a wall. It might be a behaviour. It might be a sudden fear of doing something. It might be a total change of heart, deciding that he or she doesn’t want to work toward that goal anymore, or an insistence that he or she does, but just never being ready to do the work.

I’ve learned from experience that if I decide that the goal still needs to be pursued and I keep pushing, I’m more than likely to get a meltdown like that old man’s. He needed his cars; no one understood why, but he did. Sometimes people just need to stop and regroup; I may not have a clue why, but they do. You take the choice away, you take away something larger and much more important.

Not So Easy in Practice…But Worth Trying When Possible

Of course, it’s not always this easy. People who hoard are generally living in houses that are physically unsafe for anyone to be in for even short periods, and some goals are a matter of “have to attain”; when the people involved don’t understand this, these situations are nothing short of absolutely heartbreaking, and may require intervention of a social or legal body to see that everything’s done that needs to be done to ensure that everyone involved is safe. In those cases, arranging to have someone else make decisions about the person’s health for a period may be necessary.

When it’s possible, however…when it’s feasible…we all need to remember that every single one of us is a jumble of things that move us forward…and things that sometimes hold us back, and other people may not always feel like making those “holding back” things obvious to us (or may not even be able to). And that there’s a reason why it’s very, very difficult to get someone declared unable to make their own choices. We need to realize how vital it is to let people choose, even when it’s difficult and even when people are making bad choices.

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