Too disabled for ADA?

KarenNWendyn

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There’s no place like home.

The idea of being too disabled for ADA occurred to me at a recent stay in an “accessible” vacation rental. The “standard” ADA accommodations that I’ve observed in public facilities, hotels, and vacation rentals seem to include a barrier-free entrance into a building. If there are steps, then placement of a ramp or elevator allows access.

“Handicapped” bathrooms typically have a single grab bar on one side of the toilet and occasionally a grab bar behind the toilet. There is generally extra space for maneuvering in a handicapped toilet stall or bathroom. The toilet height is usually standard. The sink may have room for a wheelchair to pull in underneath. Showers typically have grab bars but may or may not be roll-in. Sometimes a shower bench is provided but the height may or may not be adjustable.

But ALS is a progressive disorder and one size does not fit all. Though ALS tends to start out with a functional deficit in one area, the magnitude and scope of disability grows over time, occasionally to the point of total paralysis. Somewhere along the way, “standard” ADA accommodations may no longer be adequate for a PALS.

In my recent vacation stay, the “handicapped-accessible” rental was a beautiful home that had the standard ADA accommodations plus a roll-in shower. However, I needed help getting off the bed and off the toilet (even with the portable toilet stand and toilet riser I brought from home), and there was barely enough room in the bedroom for both the power wheelchair and rollator. I doubt the space would be adequate for a pwc plus a Hoyer.

It occurred to me that I’ve become too disabled for ADA, and that saddened me.

I know some people bring along or rent portable lifts, commode chairs, and hospital beds. I’m curious what solutions people have come up with for travel and to hear others’ frustrations and experiences. I’m also venting and ranting.

I realize there may be a point at which overnight travel becomes impossible.
 

affected

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such a valid vent and rant - it sucks. make the most of what you have right now is surely something important to remember and consider!
 

Nikki J

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Accessible rooms vary a lot. I think Nuts ( Becky) had a lot of experience with this and traveled with Matt a lit with a Hoyer. I know some people recommend calling the property and speaking with someone onsite and even insisting they go to the room and verify that there is space under the bed to fit a hoyer , that there is a roll in shower etc. my limited experience has been that the accessible bathrooms are big enough for equipment at least in hotels

I think some hotel chains are better than others at accommodation
 

lgelb

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It's true that many home and hotel bathrooms lack room for both a PWC and Hoyer. As a reminder for newbies, you can transfer someone from the wheelchair to Hoyer and vice versa in a room other than the bathroom, or a hall. So it is not necessary to have room for both. The same goes for transferring into a shower/commode chair. So the bathroom really only needs to have room for the Hoyer OR shower chair. A portable heater if there is not heat in the bathroom can speed up drying, before going out of the bathroom to transfer.

Many people as they progress use a toilet while in a Hoyer hovering over it, or sitting over it in a commode chair, and some end up using a portable commode the same way.

If the threshold into the bathroom is an issue for the Hoyer or shower chair, you can smooth it out with tape, a "lip" made of various materials, etc. You also want to keep the Hoyer wheels clean/oiled for smoother movement -- this is easy to forget.

All that said, "handicapped/accessible" bathroom sizes vary quite a bit. High-end properties, no surprise, tend to have bigger ones.

I think that often, it is not bathroom access that constrains overnight travel, as much as the journey, bringing equipment, and adapting to another environment. Bed height is another issue -- it may not be as advertised, with implications for using a Hoyer, and so some people literally travel with bed risers or to places they have seen before.

No doubt, "accessibility under the ADA" is often a Lucy and the football proposition at best.
 

Ken15

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Great post, Karen.

I'll start out by saying that the US is much, much, much more consistent with accessible accommodations than Europe - we should be thankful for that.

We went to Italy for 2 weeks last (2018) August when Kathy was able to ambulate short distances, but needed her transport wheelchair for anything beyond 20 ft and could not do more than 1 or 2 steps up/down. I requested accessible accommodations everywhere we went and communicated directly with the proprietors about our limitations. We did it, but it certainly was a challenge - things varied considerably, within the same country.

Back in the US; we've made 17+ trips to the Mayo this year and all involved overnight stays and travel on I-95. Early on, we requested an "accessible" room at the Courtyard Marriott on the Mayo campus. We entered the hotel room and saw virtually no accessibility; turns out it was "hearing accessible"; had a button outside the door that flashed a light inside - duh! From then on we requested ADA accessible with roll-in shower. Also, we bring the rolling shower/commode chair with us, everywhere.

Now, "family" restrooms along I-95 ranged from clean & spacious (SC) to grungy, dirty, and cramped (GA & FL). Bring your own wipes and hand sanitizer if using interstate bathrooms and don't be surprised is the door doesn't lock :).

For hurricane Dorian, I researched evacuating to an Airbnb rental, but it was way too hard to figure out if the accommodations were really accessible for us (and time was short).

Bottom Line: if in doubt, call the hotel or the proprietor in advance.

Ken
 

blitzc

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Great topic!

My gripe is with ADA recommendations for toilet height. The bar height and positioning give me very little assistance because the toilet is way too low. I can't even sit down on one anymore without help let alone be able to get up. Like many PALS, my arms don't have the strength needed to pull me up. So for the last year or so, I have not been able to use public restrooms unless my daughter was present (a rare event). So shopping, movies, and dining out have been limited beyond my mobility capabilities.

So my goal is to advocate for higher toilets in handicapped facilities!

Ideas on how to make this happen?
 

Ken15

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Cathy,

Agree that if the facility is advertised ADA, it should have the correct height toilet seat. However, while my PALS could still use it, we carried a raised toilet with handles with us. Even on a "correct height" toilet seat, the handles made a big difference (vs the grab bars).

Ken
 
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KarenNWendyn

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Cathy, I don’t know how to advocate for higher toilets, but that’s exactly my issue too.

For a couple months or so, I benefited from bringing along a portable toilet stand and toilet riser. You can bring it into public restrooms. This elevates your seat by about 4” and puts the grab bars in a more functional position. However, even this is no longer an option for me.

My CALS (female) can now assist me in a public restroom using a female urinal. I have to stand, holding onto a grab bar, while she positions the urinal. It drains into a collection bag. This won’t work for me when I can no longer stand. The first time we tried it was at a road side rest stop, and we didn’t have the valve on the collection bag properly closed, so the urine ran all over the floor when we picked up the bag! Lesson learned. Fortunately we had an absorbent Chuck pad with us to clean up the mess.
It is legal for your hubby to come assist you in a public restroom if he is willing to do this.

At home, I can still arise from my shower commode chair placed over the toilet. Once I can no longer do that, it’s Hoyer time.
 

Wilson2009

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For what it is worth. the United States Access Board, Home - United States Access Board, is the go-to federal agency for all things related to ADA, whether it is parking access or web site access or facility access. The Board is the place to start to try to force an update or a change to the existing ADA compliance rules, which were first published in 2010 and effective in 2012. By the way, I recommend not holding your breath while waiting for action. :(
 

Ken15

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It is legal for your hubby to come assist you in a public restroom if he is willing to do this.
Been there, done that. I announce to the Women's restroom that I'm coming in with a wheelchair bound female and make sure I speak loudly while we are in the women's stall doing her business, so new entrants know I am in there.

Interestingly enough, some women's stalls are as grungy (or worse) as men's; never would've thunk it o_O.

Ken
 

lgelb

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Yes, I brought my husband into the ladies' room, or a family restroom (single stall, can be bigger). I would not have ventured into the men's room. But since he could not transfer, we used a UriBag (collapsible urinal) inside the stall, stored in a plastic bag inside an omnipresent shopping back over the back of his chair. For those of you going that route, the "recline" feature of the PWC is your friend.
 

blitzc

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Dave, thanks for the link! Here is what I found:

604.4 Seats. The seat height of a water closet above the finish floor shall be 17 inches (430 mm) minimum and 19 inches (485 mm) maximum measured to the top of the seat. Seats shall not be sprung to return to a lifted position.

I plan to measure my raised toilet seat...
 

Kristina1

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Great post.

Like some others stated, I find it frustrating that ADA doesn't require a designated unisex handicap bathroom. So often there is just an accessible stall in the ladies room and I need my husband's help I get stuck having to just hold it until we are somewhere with a unisex room or at home. I didn't realize it was legal for him to come in with me to the ladies room.
 

Doglady

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Wondering if a sliding transfer board might be helpful for some situations.
 

KarenNWendyn

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Wondering if a sliding transfer board might be helpful for some situations.
Hmm... good thought. I ran a search on this forum for “sliding board transfer”, and there are quite a few good threads. Also some YouTube videos on how to use them. They don’t take up much space, so I could see how they might be good for travel.

So many topics are brought up here that we could discuss, such as sliding board transfers vs. use of a Hoyer or other lift; when does one transition to using a Hoyer?

I also saw mention of a ”toilevator”, which is a way to get more height out of your home toilet (obviously not for travel).

Sooner or later, I think it boils down to needing a Hoyer if one can’t stand or otherwise assist in a transfer. Maybe more experienced PALS/ CALS can weigh in, but perhaps that is a topic for another thread. Ok, I’ll start another thread: sliding board transfers vs Hoyer.
 
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