Disability Reviews http://disabilityreviews.org Private and Public Policy Reviews for the Disabled Fri, 09 Mar 2018 23:30:57 +0000 en-US hourly 1 3823000 May I Change the Subject? http://disabilityreviews.org/2018/03/09/may-i-change-the-subject/ http://disabilityreviews.org/2018/03/09/may-i-change-the-subject/#comments Fri, 09 Mar 2018 23:29:15 +0000 http://disabilityreviews.org/?p=530 I am a behavior support specialist in the developmental disabilities system in the State of Oregon. I am also a personal support worker (DSP) and a partner in ARISE Mentors, LLP, a provider organization employing several people as direct support professionals to work with adults with developmental disabilities. In all three of these roles, I see the service agreements and potential client announcements of a great many customers in that system.

A common theme I see in recent years is a mention that the customer “needs a lot of redirection.”

As a personal support worker and employer of direct support professionals, my reaction is something like, “This is not going to be fun!”

It usually means that someone before us has found him to have significant behavioral issues, especially around obsession with certain topics that cause him to become upset and escalate into anxious or angry communication.

As a behavior support specialist, my reaction is quite different, though my assumption about why lots of redirection is recommended is the same.

This is only my opinion, but I think that changing the subject, as redirection, is overrated. I’m not saying that it doesn’t have its place, but I feel that a note on a service agreement that says, “needs lots of redirection,” is grossly inadequate as a plan for how to deal with challenging behavior and may be more problematic for the customer than to leave the note off entirely.

What bothers me about it is that there is almost an assumption that the things the customer is trying to express when she escalates should be cut off and redirected to something more acceptable and comfortable for the worker. Yes, there does come a point when it may be doing a customer more harm than good by getting upset, but it is likely that the upsetting topic is exactly what the customer needs to discuss.

The safest assumption I make in writing functional assessments and behavior plans is that the customer experiences a lot of frustration around feeling heard. Escalation is likely to be the result of the anxiety that one more person is not going to listen.

Many adults with developmental disabilities grew up in environments where they were told what they were getting, had to like it, and that they weren’t entitled to make their own choices or have their own preferences. Because of their cognitive challenges, it was assumed they couldn’t structure their own lives around their own values. They often have found themselves in a situation where they not only couldn’t make certain choices for themselves, they were not allowed to even express their preferences.

We who serve them usually recognize this when we begin to work with a customer, but fail to notice when we start doing it to them too. After all, we’re in a profession who understands these things so we know even better than their families and custodians what they need, right? Wrong.

So, while redirection can be a useful technique for helping a client remain calm and not get upset, like a lot of techniques, it’s only postponing a problem. It will arise again in the future, and more’s the pity, because solutions may be closer than they seem with a little patience and tolerance.

One of my deepest believes about people, whether disabled or not, is that the path to positive change makes its way through the forest of self-expression. It’s like they say in 12-step groups, “If I stay in my head, I’m dead.”

For myself, when I am in an environment where I can say whatever I feel I need to say, that the very act of saying it changes my thinking about it. There’s nothing better to sort out thinking errors than to try to say them out loud. While I’m only thinking about something, it makes perfect sense to me.

I experienced that very thing in writing this. I had all sorts of what seemed to be valid arguments to support my theory here, but upon writing some of them, I promptly deleted them because I finally saw the thinking errors I had when I was only rehearsing them in my mind. When I try to say it or write it, it becomes clearer.

Yet, we deny people with developmental disabilities that opportunity by redirecting them prematurely. For a profession that prides itself on supporting people in having the same opportunities as others, we can be quick to deny them the opportunity of self-expression when the tone becomes the sort of tone that creates as much upset in us as it does in our customers.

Verbal redirection does have its place. While honoring someone’s need to express themselves, we are also responsible to protect them from harm, including self-harm. It is appropriate to redirect the tone of what they are saying, for safety’s sake, or help them postpone it until a more private setting.

Similarly, we want them to have a good social experience in activities that involve others, so redirecting them may be appropriate to facilitate a good social experience, with the promise that they can express themselves later in a more private setting.

Of a greater priority than redirection, is the setting of boundaries. Many professionals would say that setting boundaries is a form of redirection. I agree with that, but to try to change a subject is a far lesser kind of redirection than having firm, professional boundaries.

An example of this is when it comes to a worker’s private life. It is important, especially with customers with behavioral issues, that a strict professional relationship be maintained. Workers should not use examples from their private lives when trying to teach a concept to a customer. Customers will ask. It should be a firm professional boundary that a worker will not reveal things like going through a divorce, having family problems, or even irrelevant medical information.

When a customer asks, the only response should be to decline to answer, citing the professional boundary that needs to exist. This is a form of redirection, but if the customer persists, then changing the subject could be the next step.

For other things on a customer’s mind, as uncomfortable as some topics may be for the worker, the customer should be allowed to have her say in an appropriate and safe setting. Changing subjects should not circumvent an opportunity for a customer to explore their feelings and wishes on difficult and challenging topics.

It seems to take longer, but consistently letting customers stay on uncomfortable topics for longer than the worker wants to listen, is more likely to result in permanent changes than trying various ways to keep them from expressing themselves. Workers who don’t have the capacity to bear with difficult verbal and nonverbal communication should consider only accepting clients with no behavioral issues.

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The Oregon Zoo Revisited http://disabilityreviews.org/2014/06/01/the-oregon-zoo-revisited/ http://disabilityreviews.org/2014/06/01/the-oregon-zoo-revisited/#respond Sun, 01 Jun 2014 05:50:57 +0000 http://disabilityreviews.org/?p=492 A few years ago, I reviewed the Oregon Zoo. Many things have changed since then, so I offer an update.

Introduction

The Oregon Zoo is in Portland, Oregon in the hills over downtown in beautiful Washington Park. Washington Park is 130 acres of beautiful trees, valleys, streams, gardens, arboretums, and paths located withing walking distance of skyscrapers and the apartments. Due to the zoo’s location, the terrain inside the zoo is hilly.

Mobility

After standing in line at the ticket booths, you move into an area where there are shops, lockers, restrooms, and the mountain goat exhibit. In one of the shops, you can rent a scooter for $25 for the day. You’ll need a credit card or leave your identification with them. The scooter is relatively powerful. I weigh nearly 400 pounds and rode it most of the way through the zoo without it slowing down much. They also have wheelchairs for $6, but you’ll need someone strong to push you.

I am partially ambulatory, which means that I’m fairly good at walking short distances. I usually don’t even rent a personal mobility device. It depends on how I’m feeling that day. There are enough places in the zoo for me to find a place to sit for a minute or two and let my pain subside. On busy days, the entrance can be a problem for me. There are two entrances—one where you buy your ticket and later when they take your ticket. At both of these places, when there is a long line, I can develop enough problems in my back that I can ruin the rest of the trip just standing in line.

On the day I took notes for this update, I did not rent a scooter as I had done in 2008. With the scooter, I was able to visit all of the exhibits, but there were four kinds of impediments:

  1. Narrow passages – Some parts of the trails were narrow, making it difficult to maneuver the kinds of scooters they rent.
  2. Unfinished passages – There were a couple of dirt and gravel sections. The scooter navigated them fine, but I imagined it would be more difficult for a wheelchair.
  3. Steepness – Well, you can’t expect them to excavate the entire zoo to be one level. Part of Oregon’s beauty is the unevenness of its terrain. Still, it is very difficult to push a wheelchair up some of the inclines. Scooters low on power will be hopeless.
  4. Clueless human obstacles – I don’t know if they’re clueless or just stubborn. Many people will stand right in front of you, even facing you, and expect you to go around. This is not, of course, the zoo’s fault, but on extremely crowded days it can be very discouraging. This is especially true when there are school field trips in the zoo.

The zoo provides a service known as The Zoomer. It’s a golf-cart-like, electrically-powered vehicle that can hold people and wheelchairs hung on the back. If you can’t get out of your wheelchair, this won’t help you much, but it’s a nice service. There are several stops around the zoo where you can sit and wait for one to come by, or with a cell phone you can call for it. The number is on the zoo map you get when you enter. They give people rides, no questions asked.

The Zoomer cannot go everywhere in the zoo. As I said, some of the trails are barely wide enough for personal mobility devices. If you are like me and can walk a little, you can get down into one of the areas where the zoomer can’t go and then find yourself in pain and still have to get back to a place where the Zoomer can reach you.

On this most recent visit, we found ourselves near the somewhat new lion exhibit when we realized our decision to not rent a scooter was ill-conceived. Our knees and backs hurt and we wanted a ride. We went to the nearby gift shop and asked the attendant to call for the Zoomer. He made the call but before they arrived, he was relieved by another zoo employee. We asked the replacement to call again. He said that the Zoomer was on its way, but couldn’t make it down to his area. We would have to walk back up to the Orangutan exhibit which was not close. When the driver arrived, he told us that the shop keeper was misinformed and he could have picked us up near the lions.

The Great Northwest

There are two entrances to this  section of the zoo. Go down below this entrance area and you pass through the ticket takers. After this, to the left through The Great Northwest you can see some of the northwest’s animals: river otters, beavers, eagles, fish, cougars, and some bears. The Great Northwest section includes a new California Condor exhibit. Some of the old gravel and sawdust trails have been paved over, improving access for mobility devices. Many of the trails in this section are fairly narrow and difficult to navigate in the scooter and I imagine, a wheelchair. I went on a busy day and got crowded in around my scooter by people and didn’t know how I was going to get out. A lot of people seem to resent a person in a scooter or completely ignore them.

Pacific Shores

There are two ways to get to this exhibit from the entrance. One is to go through The Great Northwest and the other is to go down a long and laborious hill. Either way, it’s going to be difficult for a wheelchair returning back to the top. Take the Zoomer.

This exhibit is a beautiful aquarium-like structure that houses some kinds of fish, sea otters, and sea lions. You can see them from above the surface of the water or from below. They’ve accommodated for personal mobility devices for both.

Trillium Creek Family Farm

This area has a family farm motif with chickens and various species of goat. There are rabbits and a tractor. The ground here is dirt with a bit of gravel, so some mobility devices may have trouble with it. You can go into a goat pen when invited to pet some of the goats, although the gate may be difficult to get some devices into.

Elk Meadows

Elk Meadows is gone to make room for a larger facility for elephants. It is still under construction.

Bears

The bear exhibits are all ramped with places to park a chair or scooter.

Primates

The primate exhibits are all level. The doors have buttons to open them.

Elephants

At the present time, the zoo is under a lot of construction for a larger facility of elephants. It has rendered visiting the elephants a bit of a challenge.

Penguins

The penguin exhibit has a ramp down into it with a buttoned door, but the interior can be a little cramped.

Aviary

There is an aviary with lots of birds to see and a concrete path through it. It can be a little narrow. The doors have buttons. There are two doors to pass through as a precaution to keep the birds from escaping.

Africa

A concrete path winds around through the Africa Savannah exhibits where you can see rhinos, hippos, giraffes, gazelles, and storks. The path is adequate. Near the giraffes is an exhibit where you can see naked mole rats and other rodents. There is a button on the door.

The part of the Africa exhibit that is difficult is where you can see bats, some kinds of primates, and reptiles. The path is narrow with sharp turns. On a busy day, it is almost not navigable.

A relatively new part of the Africa exhibit is the lion enclosure and a building from which you can view African wild dogs and other animals.

Insect Zoo

This small building houses a lot of interesting insects, some you can get up close to. There’s a platform that you can’t get a scooter onto, but they will bring some of the insects to you, weather and staffing permitting.

Lorikeet Landing

This is a delightful exhibit. You can purchase a small paper cup full of nectar and enter the exhibit. Birds will land on you and eat from the cup. They’ll also leave droppings on you if you’re not careful. They no longer allow mobility devices. The gates are doubled to prevent escaping birds.

Amphitheater

The amphitheater is still there, but the stage has been torn down.

Big Cats

The tigers and leopards have an area of their own.

AfriCafe

There is a cafe with lots of spendy food. You can get to it in a wheelchair or scooter, but as with most things here, it’s a daunting task on busy days.

Railway

At this time, the railway is closed.

Summary

The Oregon Zoo has made a valiant effort at accessibility. Below are some of the points I made previously and their current status.

  1. Widen some of the trails. Have an employee navigate the whole place in a wheelchair and in a scooter. You can’t decide these things without putting yourself in the place of the disabled person.
  2. Make a concrete path through the Trillium Creek Family Farm. This has been accomplished as part of the California Condor exhibit.
  3. Nothing can be done about the steepness. It’s Oregon. The Zoomer is a good thing, but sometimes it has a hard time getting around all of the people. I knew I would not be able to get up to the top. The neuropathy in my feet was causing my problems and my arthritic back had been taxed to its limit.I suggest that there be some kind of phone at the places where the Zoomer looks for people so I can call for it.
  4. For people like me, standing in line for tickets is a real problem. Make them available online.
  5. Add more disabled parking spaces.  This one was addressed but I am not happy with the outcome. The parking lot is now part of the City of Portland’s park system and everyone pays, even people with disabled parking permits. (See Systemic Discrimination.)
  6. (New) When you do construction, why is it that you take things away from disabled people? There are long stretches of tarped fences to separate the construction areas from the view of visitors. Unfortunately, to make room for them, all of the benches that were there for people weary of body have been removed. While waiting for the Zoomer, we had to walk back to the base of the AfriCafe and wait there on hard, flat cafe chairs.

 

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Systemic Discrimination http://disabilityreviews.org/2013/08/29/oregons-broken-disabled-parking-system/ http://disabilityreviews.org/2013/08/29/oregons-broken-disabled-parking-system/#respond Thu, 29 Aug 2013 14:40:55 +0000 http://disabilityreviews.org/?p=450 disabledparking2

The Problems

Oregon, a state that prides itself on its generosity towards protected classes, such as disabled people, has a system for disabled parking that is flawed, unfair, and largely unenforced. There are different kinds of permits, but I’m going to focus on the common, renewable parking permit that is obtainable with a doctor’s signature, and, of course, a fee. I will also be mentioning the newer Wheelchair User permit.

The problems begin with fraud. It is pretty easy, if a person has a good relationship with a physician, to get a signature on the form for obtaining a permit. An IRS employee, go figure, recently admitted to having a permit simply because she didn’t want to pay $150 per month for parking in downtown Portland.

Anyone who uses a disabled parking permit has seen it. Someone parks in one of our spaces, gets out of the vehicle and bounds off like a fully-abled athlete. If you stay long enough, you’ll see them return no worse for the wear, get in, and drive off. I’ve made the effort many times to go look at their rear-view mirror to see if there’s a valid permit hanging from it. There usually is.

I don’t often go into downtown Portland, but when I do, I have a need to get as close to my destination as I can. I suffer from severe osteoarthritis in my knees and back. Walking on hard concrete is excruciating. I can bear it if I must, but I’ll end up laid up for hours later. Parking spaces filled up with unneeded parking-permitted cars forces me to park farther away and further damage my joints.

Oregon Revised Statutes allows for free parking in metered spaces where the time limit is over fifteen minutes(see ORS 811.265(1)) but also for local city and county governments to disallow it for everyone but people with Wheelchair permits.

In addition, what takes an able-bodied person 30 minutes to do probably takes me between 60 and 90 minutes. I have to walk slower, and I have to take frequent breaks. The lack of places to sit in downtown Portland is a whole ‘nother complaint.

The result of this is that if I must pay for a meter, I pay 2-3 times more than someone who is not disabled. That’s a point of discrimination I find reprehensible. In places like Portland, where you can still park in a metered space for free, it isn’t the local government that is punishing me. The people who are taking up spaces that don’t need them are doing this.

The second problem is that of enforcement. Oregon Revised Statutes allows for local governments to create a volunteer enforcement task group to patrol parking lots and write citations. The regular police do not do this. According to the law, a citation written by a volunteer has the full force of one written by a police officer. A great idea!

A law enforcement agency authorized to enforce parking laws may appoint volunteers to issue citations for violations of ORS 811.615…and 811.630…, or of ordinances dealing with parking privileges for persons with disabilities (ORS 811.865).

What is wrong with it is that some local governments don’t do this or do it poorly. I spoke with one of the volunteers in my own city of Gresham, Oregon’s 4th largest, and he told me that the city only allows three such volunteers for the whole city. These are part-time, volunteer positions without a regular schedule. The man I spoke with feels there should be many more and I agree. Gresham disabled parking is regularly abused.

Not all of Oregon is as useless. Washington County, a fairly large metropolitan area near Portland, has an enforcement program that allows citizens to take pictures of violators and has a small force of volunteers who patrol parking lots and write citations. They set an example every county in Oregon should follow.

Solutions

As much of a hassle as it is to go see a doctor and get an application signed, it needs to happen more often and physicians need to take it more seriously. Tags expire on the same date as your driver’s license, which in Oregon is 8 years after you receive it. At that time, if you want to renew your disabled parking tag, you have to submit a new doctor-authorized application. In my opinion, 8 years is too long for the disabled parking privileges without a review by a physician.

Even though my condition is mostly permanent, with significant weight loss and a couple of knee replacements, I could be good to go without a tag. There are probably a lot of people who qualified for a tag a few years ago that don’t really need one now, but they keep it and use it for their own convenience, resulting in more than mere inconvenience for the rest of us.

I’m generally not in favor of changing laws to create more work for citizens. Heaven knows we are overburdened with filling out applications for various services, but something needs to be done to take disabled parking tags away from people who don’t have a legitimate need for them.

I’m more in favor of public education. I think the government or some nonprofit organization should invest in a public awareness ad campaign about the problems created by people abusing the disabled parking system.

We also need more enforcement. Those local jurisdictions that have a trained volunteer force are to be commended as long as they allow enough volunteers. In a city the size of Gresham, there should be many more than three. Multnomah county, which includes Gresham, Portland, and Troutdale  should create, train, and manage a sizable force of volunteers.

Status

Here is how it stands in certain Oregon governments:

City Free Meters Volunteer Force
City of Portland ?
City of Eugene ?
City of Oregon City  ≠ ?
City of Gresham
City of Medford ?
City of Bend ? ?
City of Salem ?
Washington County (Beaverton, Hillsboro, etc.)
City of Newport

If you can report on your city or county’s policies or programs, please respond and I will include it in this list.

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The First to Go (Revised) http://disabilityreviews.org/2013/04/13/the-first-to-go/ http://disabilityreviews.org/2013/04/13/the-first-to-go/#respond Sat, 13 Apr 2013 23:41:30 +0000 http://disabilityreviews.org/?p=424 Since writing the following review, I received a call from Cascade Athletic Club letting me know that my concerns were heard and the situation was corrected. I am very grateful. As I said, they are very good with people with disabilities.

Why is it that disabled parking spaces are the first things to go when a business needs to use their parking lot for another purpose? I see it all the time. People who don’t use or aren’t eligible to use a disabled parking space don’t really see why they are important to those of use who have trouble getting around.

cac_parking

So, when they decide to plan some kind of event where they want to use part of their parking lot for something other than parking cars, they choose the disable spots closed to their doors. The most recent example I’ve seen is at my very own club: Cascade Athletic Club in Gresham, Oregon.

The weekend beginning 4/12/2013, the club is hosting a big racquetball tournament. To make a little extra money from it, they’ve invited Boyd’s Coffee, a local company, to set up a van and sell coffee to people coming to the event. In the photo above, you can see that they’ve set up orange cones to mark off three parking spaces, two of which are painted with the emblem marking them as for disabled people. Also, note the sign on the wall.

The car on the left with the paper in the window is there from a local dealer as an advertisement. There are three such cars on the raised entryway to the club which is to the left of the picture. There is another showroom car inside the club.

boydscoffeeWhile I was there, the Boyd’s Coffee van pulled up and parked to the right, perpendicular to the lines. After it was parked, a minivan was pulled in, another showroom vehicle.

I like my club. No, I’ll even go so far as to say that I love my club. Ordinarily, they are very helpful to people with disabilities. The pool area is equipped with a device for lowering people into the pool who can’t get in on their own. There is a lift from the main floor down to a lower level. They give me a nice discount for bringing in disabled clients. They’ve been awesome.

Yet, when it comes to parking spaces, they’ve been pretty lax. I think that a lot of people have a negative attitude about these spaces. They don’t like that some of us get to park closer to buildings. They see it as a convenience for us rather than a necessity.

For the last three days, my back problem has flared up. I’m walking with my upper body at a right angle to my lower body. Every step is excruciating. I have to walk from something to lean on to the next thing to lean on. Friday morning, when I pulled into the parking lot and tried to park close to the building, I was greeted by the orange cones blocking my way. On my way out, I left the comment in the suggestion box: “Selling coffee is an awful excuse for blocking disabled parking.”

I parked about forty feet behind where you see that I took the picture above, thirty feet farther away than necessary. I really wish that people would view these important parking spaces as inviolate. I know it won’t happen, because enforcement in Oregon is so pathetic, but I imagined Boyd’s Coffee getting a nice $288 citation as well as the car dealer who parked his minivan in one of the spaces.

If you are a company that is planning a special event and you need part of your parking lot to serve a different purpose, please do everything you can to keep the disabled parking spaces available to those who need them.

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It’s Their World Too http://disabilityreviews.org/2013/02/25/its-their-world-too/ http://disabilityreviews.org/2013/02/25/its-their-world-too/#comments Tue, 26 Feb 2013 02:54:32 +0000 http://disabilityreviews.org/?p=405 ddAs a skills trainer and behavior support specialist for developmentally disabled adults, I often find myself in the community and in the company of people whose behavior is often outside the realm of what other people find comfortable. In many situations, the reactions of my customers are often overstated by social norms and draw the attention of people.

There was a time when the looks I would get would be full of disdain and contained a nonverbal message like, “Can’t you control that person?”

Well, the truth is, I can’t control them, nor do I wish to. Every society has a way of doing things that the majority of people in the society think of as normal. For example, in a movie theater, you are supposed to laugh at the funny parts. Sometimes, I’m with people who laugh at not-so-funny parts, and when the funny parts come, they laugh even louder.

Not long ago, as I was taking a customer to go swimming, I stopped to use the restroom while my customer went to where his locker is. There is always some peppy music playing over the sound system. When I rounded the corner, there was my customer, in full frontal glory, doing a happy dance to the beat of the song that was playing. He was having fun. I laughed. It wasn’t a busy time in the locker room, so no one saw him but me. I’m glad, because men can get pretty judgmental about how other men behave in there.

Sometimes, my customers will talk very loud and make a ruckus that draws angry stares from people in the vicinity. The other day, we were in an office foyer and my customer was talking very loud. A man came out of one of the offices and demanded we keep it down.

It isn’t my job to control this behavior, but it is my job to teach my customers how to control their own behavior. I do this through induction and modeling. In other words, I tell them how and I show them how. Whether they choose to alter their behavior is completely their choice.

Induction is the process of reasoning with a person. It assumes that the person has the ability to understand their actions and the resulting consequences. I have found that most developmentally disabled adults have this ability to some degree.

Modeling is the process of exhibiting a behavior by example, not just as a teaching tool, but as a way of life that my customer can see as working for me.

And, I ask, “Why not? Why shouldn’t they be able to choose their own behavior to the best of their ability?”

I am also often in the company of people who can’t control their behavior, like with a person with cerebral palsy who has a hard enough time speaking without having to also worry a lot about volume. There are also nonverbal people who can’t speak or control loud noises they make.

In former times, and not so long ago, we would lock such people out of sight of the rest of the world. Today, we do our best to help them integrate into the community, to be part of things. Yet, despite improvements, there are still some who want them out of sight and out of mind.

At my gym, I’ve been told by some members that they don’t want me bringing my “crazies” to the gym. As much as I wish I were surprised at such behavior, I think it is still part of our culture to want things to be a certain way.

There is another side to the dilemma. I completely understand that people want to be comfortable, especially when they’ve paid money to enjoy themselves and feel that people who don’t seem to be able to control their behavior are infringing on that enjoyment.

My own tolerance was challenged recently when I went to a theater to see a show. I was accompanying two people who need mobility devices and one other companion. Before us in line were several other disabled adults, one of whom kept laughing out loud every few minutes. I really wondered how I would feel if I ended up in the same theater with that group.

I try to put myself into other people’s places. Let’s say that I have gone to a movie theater to enjoy a movie. I’ve paid for my ticket and I hope to have a relaxing and enjoyable time. A local group home for developmentally disabled adults has brought some residents to enjoy the movie, but one of them can’t seem to control herself when it comes to making sounds and laughing at inappropriate times. What do you think should happen?

Somewhere there is a balance and I don’t claim to know what that balance is. I’m inclined to make personal allowances and try to show some tolerance. I know that I expect accommodations to be made for my disability. When a store doesn’t provide a scooter or the disabled parking spaces are full, I get irritated. I think that if the store wants me to be their customer, they need to help me shop there.

I’m somewhat of a libertarian in my way of thinking. I don’t necessarily think that legislation is the answer. I like it when things are market-driven. We who are disabled are and should be a formidable customer base. We have our own money. I don’t have to spend it at establishments that make it difficult for me to be their customer. That should be incentive enough.

Yet, there’s not a lot about my disability that makes it hard for people to enjoy a movie in the same theater with me. I’m well-behaved by the social standards of most people. Yet, as much as I am frustrated by the lack of accommodations for my disability, how must it be for people who can’t express their frustrations as forcefully and articulately  as I can?

When I’m in professional mode, knowing that it is part of my job to advocate for people who need my help, I am frustrated on their behalf when establishments and our society try to exclude them. We all have to live in this world together. I like my world a certain way, but I keep reminding myself that it is their world too.

 

 

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PDX Gatherings http://disabilityreviews.org/2012/06/26/pdx-gatherings/ http://disabilityreviews.org/2012/06/26/pdx-gatherings/#respond Tue, 26 Jun 2012 15:23:53 +0000 http://disabilityreviews.org/?p=390 Announcing PDX Gatherings

PDX Gatherings is a forum and tool for arranging get-togethers of any size for customers with developmental disabilities, colleagues, and other interested parties living in the Portland Oregon area.

You can announce events you’ve already planned, or begin a discussion about planning something you’d like to do.

The best place to start is the to take the “tour” of the web site here. Once you register, you can request to join the forum. Once your request is granted, you can start posting about events.

To post an event or even just an idea for an event, just click on PDX Gatherings in the list of forums. Fill out a description of the event or idea in the main box and give as many details as you can in the forum underneath the main box. Publish it by clicking “Submit” and you’re done.

You can reply to events others have posted and try to make arrangements there.

You can also just talk about issues related to getting together. Give it a try.

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Sitting Bull http://disabilityreviews.org/2012/05/05/sitting-bull/ http://disabilityreviews.org/2012/05/05/sitting-bull/#respond Sat, 05 May 2012 17:26:25 +0000 http://disabilityreviews.org/?p=302 With all due respect to the old chieftain, I am talking about a different kind of bull. Pardon me for my indelicacy, but I find the issue of places to sit for people with disabilities like mine to be one full of a certain bovine waste product. Maybe when I’ve had my say, you’ll think I’m the one full of it. For most people, it may not seem like that big of a problem. You go to buy something at a store, maybe even a very large store. You park, you walk in, you find your items, you wait in the checkout line, you pay for your purchases, and you return to your car. From the time you alighted from your car and returned to it, you were on your feet.

Now, imagine that you have a condition like mine, severe degenerative joint disease in your back and knees. You can walk and even stand for awhile. Maybe even in a small store, you can follow the above steps and not need a place to sit, but find a mega store like a full-service Walmart or something of a similar size.

You would have some alternatives. A lot of stores have scooters you can borrow, though they are usually being used or have been rundown and not recharged. You could get a shopping cart and lean on it while you traverse the store, something I often do.

I always have loved the movie, “Ben-Hur”. When the main character was sentenced to rowing in a galley ship, the ship’s speed was controlled by a man beating a drum with hammers. They had various speeds, including “ramming speed” and “attack speed”. When you are just shopping at a store, you end up walking at what I call “shopping speed”. It always results in a backache.

Neither is a very good solution. For me, I like to reserve the scooters for people less mobile than myself. I once read that in order to be eligible for a scooter paid for by an insurance company, you had to not be able to walk more than ten feet. I can certainly walk that much. I try to only use a scooter when the store is just too big for me to walk in one long stroll without hurting my back and knees.

Leaning on a shopping cart takes some of the pressure off of my back, but none off of my knees. Ever since the injury that ruined my back, it has been hard for me to walk at what I call “shopping speed”. For a long time, I just avoided going to stores. My wife did the shopping.

That’s not a very inclusive way to live, so I’ve made the effort to go to stores more. There are still major challenges for me. One thing that helps immensely is when a store has the occasional bench or chair.

It is a rare store that has such places to sit in the store proper. Sometimes they have them at the entrance or at a cafe, but not out on “the floor.”

A couple of weeks ago, I was in Fry’s Electronics in Wilsonville, Oregon. I was with a client who was buying a phone. He already knew what phone he wanted. The salesperson started the process and couldn’t get the computer to work. It took over a half-hour. I had just bought the same phone there the week before. It took about ten minutes. After fifteen minutes of standing in one place on a concrete floor, I’m just about done in.

I found a nearby washer/dryer on display and went and leaned on it. It helped my back while I was leaning, but my knees were still aching and as soon as I stood up, my back started hurting again. Other than the office chair section, the cafe, and the toilets, there’s not a place for a customer to sit in the whole place.

The worst configuration is at Verizon stores in my area. They have these extremely low-to-the-ground cushioned stools.  To sit in one, I have to bend my knees and back as far as I can without hurting them and plop into the cushion. As if that weren’t bad enough, when they called my name to come to the counter and be helped, I couldn’t get out of it. It was just a large square stool—no handles, no nearby railings, nothing but air and a wall behind you. As I struggled to my feet, do you think the salesperson offered a hand? I used to think that some kind of seat was better than none at all. I’ve changed my mind.

While I’m on the subject of sitting, let me bring up another indelicate topic—toilets. They come in various heights. When they are low to the floor, it takes a lot of effort to get up. Probably the worst feature of most toilet stalls in facilities is the toilet paper dispenser that is so low and close to the toilet that you can’t sit on the toilet straight ahead. What idiot designed a toilet stall like that? Probably one that never sat on that toilet before he/she decided where to place the toilet paper dispenser.

Come on, you people who do this stuff! There are a lot of people like me out there for whom shopping in your stores is almost an insurmountable obstacle. We have money too. Don’t you want to sell things to us?

Recommendations


Make sure there is a place to sit in all departments of your store.

Raise the toilet paper dispensers. Try sitting on the toilet yourself before you decide how high you’re going to put the dispenser.

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Miles Wise, Hours Foolish http://disabilityreviews.org/2011/11/01/miles-wise-hours-foolish/ http://disabilityreviews.org/2011/11/01/miles-wise-hours-foolish/#respond Tue, 01 Nov 2011 18:10:31 +0000 http://disabilityreviews.org/?p=181 I’m sure you’ve heard the idiom, “Penny wise, pound foolish.” It refers to decisions made by people who scrutinize the smallest expenditures of money while ignoring the waste of great amounts of money. A decision is penny wise and pound foolish when it wastes more money that it saves.

In Oregon, some services for developmentally disabled adults are managed through state-approved brokerages that handle a certain amount of case-management activities and broker contracts between clients and providers of services. These service providers are sometimes offered reimbursement for miles driven at somewhere near the federal allowable mileage deduction. Miles claimed for reimbursement must be used with the client in the vehicle and while providing services that match a contract for hourly services provided. Among other things provided by the brokerage are bus passes for the local transit system, Trimet.

There are other things provided by the brokerage in terms of products and services, but these three are the focus of this review.

  1. Mileage reimbursement to providers at a rate around $.45 per mile.
  2. Hourly reimbursement to providers at a maximum rate of $23.72 per hour.
  3. A bus pass for clients that currently costs $26 dollars for those who can qualify with Trimet as Honored Citizens.

I am such a provider. My clients/customers annually are reviewed for their services in meetings at the brokerage that I usually attend. In recent meetings, personal agents representing the brokerage, have expressed a sentiment that is now becoming policy. The sentiment is expressed in the following question:

Why should we pay for mileage when we already provide the customer with a bus pass?

On the surface, it seems like a fair question. However, like so many other “fair questions”, if one thinks it through, a lot of inconsistencies come to light.

Consider the following scenario:

A customer whom we’ll call Arnie lives near Clackamas Town Center in a suburb just southeast of Portland proper. He has an appointment in downtown Portland for which he needs support from his provider, whom we’ll call Ralph. Using Trimet’s Green Line light rail train, it takes an average of about 42 minutes to go from Clackamas Town Center to downtown Portland, according to Trimet’s online trip planner. According to Mapquest, it takes approximately 20 minutes by car to drive the 14 miles, using the fastest route.

Now do the math:

For a round trip, taking a car saves 40 minutes (20 x 2) over taking the light rail. 40 minutes at the rate of $23.72 per hour comes to $15.81, a time-based savings over the more time-consuming choice of taking mass transit. The round trip of 28 miles (14 x 2) at the rate of $.45 per mile is $12.60, reducing the savings to $3.21 for that one trip.

On any given work day for me, I am likely to make an average of three such trips with a client. With most clients, I usually work once per week, or about twelve trips per month. So, for one month, using my car for transportation, I would save my customer’s budget about $38.52 per month, $12.52 more than the cost of a $26 Trimet Honored Citizen’s pass for the month.

The numbers in this example are not typical of a trip in Portland. There are few to/from combinations that don’t require a transfer of some kind. Rather than a one-way trip taking 42 minutes by mass transit, it is likely to take more than an hour, but often about the same amount of driving time in a vehicle.

Here is another more realistic example:

Arnie has an appointment at his doctor’s office near Good Samaritan Hospital. It is 140 minutes round trip by mass transit including time waiting to transfer from light rail to bus. Ralph can drive the 32.3 miles and back in 48 minutes for a savings of 92 minutes times the hourly rate of $23.72 for a savings of $36.37. Ralph will be reimbursed $16.37 for the trip, saving Arnie’s budget $20. That’s just $6 shy of the cost of the Honored Citizen pass.

The realism doesn’t stop there. Ralph can drive from door to door. He can pick Arnie up at his home and deliver him right to the doctor’s office. On the other hand, if they use Trimet, once they arrive in Northwest Portland, there is still the task of walking from where the bus drops them off to the office.

To be fair, sometimes taking the bus does represent a savings. To see this calculated for all sorts of scenarios, use my easy calculator.

There are also differences that can’t entirely be measured in time and miles. For that 92 minutes saved in the last scenario, Ralph could be providing skills training services that can’t be performed while riding a bus or train.

While I am in my vehicle with a client, we can talk about anything related to his situation and the work we do together. There’s no one around to hear it. That ever important confidentiality is maintained. Not so for the entire 140 minutes spent on a bus or train. I can’t do much more than carry on casual conversations with my client. To do more than that would potentially reveal protected information about my client to anyone within earshot.

Now, if the concern in all of this is the environment, the dependence in this country on foreign oil, or any other arguments that extol the virtues of mass transit, the choice would be clear. Take the bus. However, the question that started all of this was, “Why should we pay for mileage when we already provide the customer with a bus pass?” The question, as posed, doesn’t really have anything to do with saving the planet, does it?

Sometimes, I am contracted with a client to help him learn how to navigate around on the mass transit system. At times when I am teaching that skill, going by bus is an easy decision. As long as we’re not going to places he already knows how to reach by bus, it seems taking the bus is the right thing to do. If, however, I am supporting him in an activity where he knows how to get there on the bus, I’m wasting valuable time getting there by bus that could be used to work on other skills.

The implementation of the new policies based on this ridiculous question will require me to justify why I drove somewhere instead of taking the buses. To me, it’s upside-down. Given the above facts, I should be required to justify why I wasted valuable skills-training time by taking the buses.

I am only with clients about once a week, sometimes less. For the rest of their 20+ days that don’t include me, they are getting around with their bus passes. The bus pass provides them with freedom, accessibility, and independence when I am not there to support them. That is the right answer to, “Why should we pay for mileage when we already provide the customer with a bus pass?”

None of the personal agents who are repeating this asinine question are able to identify just exactly who first asked it. It is always a mysterious “someone” who is coming up with this stuff. I tend to think that we only get “someone” as a reference because Someone doesn’t want to answer for it.

The scary thing about even writing this review for me is that the same Someone will probably also get the idea that because you can’t do real skills training while riding a bus, workers like me shouldn’t be able to bill for time on a bus. You probably read this and laugh, it’s so ridiculous, but I’ve seen that kind of thing over and over in this system.

Maybe I’m wrong, but I always envision a bunch of administrative types sitting around in a conference room because they don’t want to be at their desks working. They are asking questions like the one that prompted this review and no one “in the trenches” like me is there to explain the realities to them.

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Home of the $12.99 Soda http://disabilityreviews.org/2010/06/27/home-of-the-12-99-soda/ http://disabilityreviews.org/2010/06/27/home-of-the-12-99-soda/#respond Sun, 27 Jun 2010 21:59:36 +0000 http://disabilityreviews.org/?p=156 Six Flags Discovery Kingdom lies north of the Golden Gate Bridge in Vallejo, California. It is a theme park based mostly on marine life, including Shouka the Orca, Merlin the Dolphin, who are each other’s best friends. More about the Saga of the Soda later.We were there with our daughter and her young family. They have season passes. We went there as their guests.

I just want to start by saying that there’s no other influence that could make me not enjoy a place if my grandchildren are present and having fun. The park was definitely fun. It was also very clean. The attractions and food options were of high quality and entertaining. The shows we saw were well-done.

Of course, here on this web site, the focus is on how well an establishment like Six Flags Discovery Kingdom does when it comes to accommodating people with disabilities. If I were giving a grade, it would have been a D.

So, here comes the nits I have to pick. If you’re waiting still for the Saga of the Soda, it’s still later.

We arrived in the early afternoon. Across the street from the park is the county fairgrounds. The fairgrounds parking lot also serves as overflow for the park. By the time we arrived, the regular parking lot was full. Coming from the north along Fairgrounds Drive was a traffic jam, complete with an injury accident. It was caused by people trying to get into the park’s parking lot. They were being diverted across the street to the fairgrounds.

We happened to know that thanks to cell phones and our son-in-law who was guaranteed a spot at the park because of his season pass. We went directly to the fairgrounds lot and saved ourselves some time.

As we waited in a long line to the front, I asked the person directing traffic if there were spots reserved for disabled people. She didn’t know. I asked the person taking my money. He didn’t know. I asked the person along the route to the parking area. He didn’t know.

So, we parked where they directed us, even with my parking tag hanging from my mirror in plain site. My wife wiggled it at him so he could see it. He just kept waving us into a spot.

Of course, using it was risking a ticket. See California Travel Advice.

So, we walked down the long aisle towards the park and saw a row of cars parked against the fence. My wife said, “Gee. We could have parked there.”

The man guarding the spots curtly said, “You have to have a disabled tag.”

“We do,” I said, annoyed.

Did I mention it was a gravel parking lot and my cane sometimes slipped on rock?

The path from the fairground parking lot to the front entrance is probably a good half-mile. Once you cross Fairgrounds Drive, it is asphalt. The troubling thing was that all along this path you could see faded paint on the asphalt surface where disabled parking once once. It had been replaced by the path to the front gate.

Why is it that establishments consider the disabled parking spaces the most expendable when things change? See Piles of Shame.

Inside the gate are some lockers. I had been carrying a backpack with medications and other stuff I might need but didn’t want to carry around. The locks are all electronic. You pay for a locker. The computer opens it for you and prints out a receipt with a code. When you want to open it, you go back to the computer console, put in your code, and it unlocks your locker. I made the mistake of putting the receipt in my wallet and then putting my wallet in the locker. That was my fault.

I went, hobbling with my cane, back to the main entrance area looking for a human being to help me. There were ticket-takers and photographers. I interrupted a ticket-taker and asked for help. They called someone to come help me.

Once we got that out of the way, we had a very enjoyable time with our family. My daughter and son-in-law wanted to ride on the whitewater ride, so we took the kids to watch Shouka. We got there late and had to sit in the back. My son-in-law helped.

We had to leave the stroller down below. When the show was over, which was great, we had to wait for our son-in-law to come help us with the kids. Before he got there, a security person told us we had to leave.

There we were with three kids under five, including an infant less than one year old. I had my cane, a backpack, and a hefty diaper bag. The nearest exit was down a flight of stairs. My wife and I had to get all of that down the stairs without any help. It was touch and go.

While our grandchildren rode a little elephant ride, I waited by a souvenir shop. In the shade of the shop was a nice woman in a skooter. I asked her about her experience there. She said that they got to park in a disabled space but that the shuttles that came to pick them up couldn’t accommodate her skooter. Finally a shuttle came that could. I gave her this web site’s address. I hope she will visit.

So, now what you’ve been waiting for:

The Saga of the Soda

I noticed people wearing a wrist band that said they were entitled to All-You-Can-Drink soda. I found a place that offered them. You pay $12.99 and get a green cup and one of the wrist bands.

I showed my wrist to the cashier. There was no way the band was going to fit around my wrist. My wrist is not just big because I am overweight. It has always been big, even when I was skinny. The last time I bought a wristband for unlimited something-or-other, it popped right off.

The cashier attached my wrist band to the handle of the soda. I assumed this was standard procedure when someone’s wrist is large like mine.

I planned on drinking a lot. I’m not accustomed to California weather and I like to keep hydrated.

When I was ready for a refill, I went into an area with a lot of food stands. Remember that I have difficulty walking and use a cane. Even more difficult for me is standing. So, I looked for a stand that had a small line.

I handed my cup with the orange band on the handle. The man said, “I can’t refill that unless you wear it on your wrist.”

I showed him my wrist and explained to him why I wasn’t wearing the band. He stepped back and put his hands in the air like I had a gun aimed at him. “I can’t refill it!” he said adamantly. It seemed clear to me that he’d call security and have me arrested if I pressed it any further. I was scaring the poor guy, though I was calm throughout.

I went to find another food place that had a short line. It was around dinner time and there wasn’t any that I could have managed to stand in.

While looking around, I noticed a small booth with a security officer behind it. I went to him and explained it, asking if there was anything he could do. He acted as if he were sympathetic, but all he could offer was that I go all the way back to the front entrance and explain it at the Guest Relations counter. I pointed out that I was disabled and that walking that far and walking back to my family was going to be difficult. I asked if there was someone he could call. He couldn’t.

I thought about going back to the corn dog shack where I had been refused and asking them to call someone, but considering how the man there reacted, I didn’t want to scare him anymore. Am I really that scary?

So, I walked around for the rest of my visit with my worthless green cup. When my family left, I told them I was going to Guest Relations to complain. Of course, Guest Relations wasn’t really near to the front of the park.

You see, when you have to get somewhere with the aid of a cane or a walker, what seems close to others is not close to you. I was determined to at least have my say, even if nothing came of it.

I arrived at a small counter with one woman, Theresa. Guess what? There was a line and nowhere to sit without losing my place in line. So, I leaned on my cane and waited.

When my turn finally came, I explained what happened. Theresa couldn’t do anything about it either. Theresa tried to reach the person who sold me the drink but she wasn’t available. I showed her my receipt.

She made a phone call and said that a food supervisor was going to come and escort me to a food place that would refill my drink for me. When the food supervisor arrived, I was in a great deal of pain from standing in line and waiting for her. My family was outside the front gate waiting for me.

I told her that escorting me to a place to get a drink would have resulted in me getting exactly two drinks for my $12.99 and that I already had to walk back the half mile to my car with my backpack, cane, and drink. She offered to carry the drink with me to my car.

At this point, let me say that I wish I had gotten the name of this food supervisor. She really did a good job of listening and empathizing with me. She was the highlight of the entire incident.

I believe she was sincere about the offer. To my objection that I would get only two drinks, she offered to get me a second cup and carry them both back to the fairgrounds parking lot for me. I declined. My family was waiting and I just wanted to leave.

She took my name and address and promised to send me some complimentary coupons for things to make up for my trouble. As of this writing, I haven’t received them, but there is still time.

Recommendations for Six Flags Discovery Kingdom

  • Either restore nearby parking places for the disabled or equip all of your shuttles with the ability to accommodate disabled people.
  • Have more benches in the shade. I had to stand a lot because there was a shortage of shaded places to sit. The shortage seemed the worse in the kiddy play area. Do they think that only older people whose kids are grown are disabled and may need to sit? What about grandparents? What about young disabled people with children?
  • Better yet, have seating around that is specifically reserved for elderly and disabled people. Buses do it. Parks can too. There was a dolphin encounter pool. It would have been easy enough to have about three benches facing the pool and a sign saying, “Please give preference for these seats to the elderly and people with disabilities.”
  • I tried to ride a ride but couldn’t stand in the line. I couldn’t see if they would accommodate me because of my disability. They don’t even say what their policy is on their website. Instead, it says to contact Guest Relations. Poor lone Theresa will no doubt get to you when she can. Put the policy on the web site.
  • Is it really running a guest relations department to have one person at the Guest Relations counter on a day that is so busy that parking overflows into the fairgrounds? Have more than one person at the counter.
  • Have a roving guest relations person. I should have been able to expect that the security guard I spoke to could have made a call and someone could have come to me to help me with my problem.
  • There were several food places that had one window operating. If a worker sees a person with a cane or walker standing in line to get food, someone should come out, take the person’s order, and let the person go sit down. I saw a lot of people standing around behind closed off counters.
  • This one is for the fairgrounds parking staff, which I assume is not part of Six Flags. Train your people about where the disabled spaces are and have them keep in touch as to availability.
  • To be truly disabled-friendly, have a roving disability ombudsman type of person.
  • Get longer wrist bands for your all-you-can-drinks.
  • Give the food supervisor who helped me a raise.
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Size Madness http://disabilityreviews.org/2010/05/20/size-madness/ http://disabilityreviews.org/2010/05/20/size-madness/#respond Fri, 21 May 2010 03:52:26 +0000 http://disabilityreviews.org/?p=144 A couple of years ago, about the only place I could find casual clothing for my large body was Kmart. There were other stores, including Casual Male Big and Tall, but the prices were too high for me. Then, suddenly, everything above 2X seemed to have disappeared from the Kmart racks.Some Fred Meyer stores had “big and tall” sections, but none of them had men’s swim trunks. That was the item I needed the most. Prices there were reasonable.

Wal-mart has large sizes, but the largest I’ve ever found locally has been 2X. They don’t really have a big and tall section. They mix the larger sizes in with everything else. The signs on their clothing fixtures have one price for the garment and a higher price for the larger sizes. I think they ought out to have a big and tall men’s section.

I checked back at Kmart every few weeks to see if the larger sizes had returned. It wasn’t just the swim trunks that weren’t there. I searched for sweat pants for myself and a client who also needs larger sizes.

Then, about a month ago, I was in a Kmart and saw men’s swim trunks, basketball-style shorts, t-shirts, everything. Size went all the way up to 4X. 4X is adequate for me, though I sometimes like a 5X t-shirt just for roominess.

I don’t know why Kmart decided for awhile to not carry big and tall sizes, but I appreciate that they carry them now. So, they get a big Thank You from me.

So, here’s what I don’t understand:

Everyone is saying that obesity is rampant in America. As I look around, it seems to be true. As unfortunate as that may be, it seems that large clothing is a must. It seems to me that it would be smart for chains like Kmart to carry large sizes. Yet, there are dry spells in America where big people have to buy expensive clothing from catalogs and web sites.

One example of this strange state of affairs happened at the gym where I swim. They are always trying to sell t-shirts, hoodies, and such there. Walk in a gym sometime where they sell clothing and look at the sizes. 2X is about as high as you’ll find.

My gym orders a few items above 2X, but not many. By the time I look the table over, they’ve sold out of everything over 2X. I talked to the manager at my gym about it, and he said they couldn’t sell the larger sizes, so they don’t order them.

The funny thing is, after a certain t-shirt is around for awhile, they mark down all of that type to sell them. For weeks, these smaller sizes sit there unsold while people ask for the larger sizes. I don’t think that people really understand. I’ve speculated that it has to do with the large sizes costing more when they buy them and they can’t sell them at as much of a profit. I think it is shortsighted, though. Better to have articles of clothing that people want and will pay for than having to mark down all of the “regular” sizes.

I think that retailers are in denial about big people. Like many things we find unpleasant, people like to believe that America isn’t obese. Now, I think it would be good if we’d all live healthier. I’ve lost 50 pounds myself. I’m quite proud of that. I look forward to wearing smaller clothing.

Let me ask a ridiculous question that I think illustrates something important. What do they want really big people to do while they work at losing weight? Go naked until they can fit into the clothing that retailers want to sell?

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