Child using personal ECV issue

[bairdbeth]

My 8 year old son uses a scooter (medically prescribed and personally owned) for long distances and to conserve energy. He has Duchenne Muscular Dystrophy. He used it at Disney for the first time at the end of May. We had no issue at MK or EP, but did run into some negative encounters(they way/tone that they used and 1 very inappropriate question) with CM's at AK and DHS who, in summary, told me my child could NOT drive his ECV as Disney did not allow it. It was not due to his driving ability(he did not hit anyone and he is overly cautious and slow) It was so bad at DHS that we left the park after a couple of hours. I did stop by guest services and got the email of who to send a note to, which I did that evening. A supervisor did call me once we were home and we spoke about the situation and possible remedies for about an hour. I had hoped things would be better when we returned yesterday to go to the Frozen Summer event, but in fact they were worse. I never even got out of guest services before the trouble began. I spent over an hour there and had a long discussion with the Park Duty Supervisor who apologized and tried to remedy the situation(and really was very nice). They kept referring to their park policy that no one under the age of 18 may operate their rented ECV's. I won't go through our entire conversation here as I reiterated that it is his personal mobility device and a long slew of examples. The fix for yesterday was to put a blue tag on my son's scooter. He also said that they were giving a "one time exception" to the rule so we could enjoy our day. My response was "What happens next time? His scooter is not a one time exception, but a daily use item." The Park Duty Supervisor said that he can't make any decisions above that and that he understood completely and that someone higher up would be calling me in a few days. I don't want to start a debate or tirades of anti-Disney comments with this info. I still have faith that Disney will get this right. I have presented this info to make sure that I understand the ADA requirements correctly when I speak with Disney this week. It would seem to me that they would be out of compliance to refuse my son(or any child) to be able to use his personally owned, medically prescribed mobility device provided that it is not a device that doesn't meet the requirements for a mobility device(I know the Segway brought issue up) His ECV is a 3 wheeled Lynx L-3. I know that Disney would never tell a parent of a young child in a power chair that they could not use their chair in the parks. The scooter is my son's power chair right now. Is my understanding correct?

 

[SueM in MN]

My 8 year old son uses a scooter (medically prescribed and personally owned) for long distances and to conserve energy. He has Duchenne Muscular Dystrophy. He used it at Disney for the first time at the end of May. We had no issue at MK or EP, but did run into some negative encounters(they way/tone that they used and 1 very inappropriate question) with CM's at AK and DHS who, in summary, told me my child could NOT drive his ECV as Disney did not allow it. It was not due to his driving ability(he did not hit anyone and he is overly cautious and slow) It was so bad at DHS that we left the park after a couple of hours. I did stop by guest services and got the email of who to send a note to, which I did that evening. A supervisor did call me once we were home and we spoke about the situation and possible remedies for about an hour. I had hoped things would be better when we returned yesterday to go to the Frozen Summer event, but in fact they were worse. I never even got out of guest services before the trouble began. I spent over an hour there and had a long discussion with the Park Duty Supervisor who apologized and tried to remedy the situation(and really was very nice). They kept referring to their park policy that no one under the age of 18 may operate their rented ECV's. I won't go through our entire conversation here as I reiterated that it is his personal mobility device and a long slew of examples. The fix for yesterday was to put a blue tag on my son's scooter. He also said that they were giving a "one time exception" to the rule so we could enjoy our day. My response was "What happens next time? His scooter is not a one time exception, but a daily use item." The Park Duty Supervisor said that he can't make any decisions above that and that he understood completely and that someone higher up would be calling me in a few days. I don't want to start a debate or tirades of anti-Disney comments with this info. I still have faith that Disney will get this right. I have presented this info to make sure that I understand the ADA requirements correctly when I speak with Disney this week. It would seem to me that they would be out of compliance to refuse my son(or any child) to be able to use his personally owned, medically prescribed mobility device provided that it is not a device that doesn't meet the requirements for a mobility device(I know the Segway brought issue up) His ECV is a 3 wheeled Lynx L-3. I know that Disney would never tell a parent of a young child in a power chair that they could not use their chair in the parks. The scooter is my son's power chair right now. Is my understanding correct?

You are correct.
He should not have been stopped just because he was a child driving an ECV.

Your son is the victim of people who are renting ECVs and letting their (untrained) child ride it. The elementary age children I have seen driving ECVs at WDW had smaller ECVs, adjusted to their smaller size, so it was pretty clear they were not just taking Grandma's ECV for a ride.
But, a lot of people do allow their children to drive another adult's ECV. But, even then, they should be given the benefit of the doubt unless they are doing something dangerous, driving a Disney park rental ECV (since the rental agreement says no drivers under 18) or the ECV is so obviously big for them that controlling it would not be possible.

The correct treatment should have been to give you a blue tag - not as a one-time situation, but as a "it seems some of our CMs are having a difficult time understanding this belongs to your child, so let's use this blue tag to make it clears to them."

Personally, I would bling it up with stickers, lights, whatever you can your hands on so that it is velar he didn't just rent it and it does belong to him.

 

[bairdbeth]

Thanks Sue! Just wanted to be sure I was correct before I spoke with them. When I spoke with a lower end supervisor after the May incident, I suggested that they have a tag, such as the one they use for a stroller as a wheelchair, in order to alert CM's that it was a personally owned ECV with a minor driver. At this point I just want to be sure that Disney listens and puts something in place so that neither myself nor anyone else has to go through this ordeal and waste over and hour each trip.

 

[asta]

My 8 year old son uses a scooter (medically prescribed and personally owned) for long distances and to conserve energy. He has Duchenne Muscular Dystrophy. He used it at Disney for the first time at the end of May. We had no issue at MK or EP, but did run into some negative encounters(they way/tone that they used and 1 very inappropriate question) with CM's at AK and DHS who, in summary, told me my child could NOT drive his ECV as Disney did not allow it. It was not due to his driving ability(he did not hit anyone and he is overly cautious and slow) It was so bad at DHS that we left the park after a couple of hours. I did stop by guest services and got the email of who to send a note to, which I did that evening. A supervisor did call me once we were home and we spoke about the situation and possible remedies for about an hour. I had hoped things would be better when we returned yesterday to go to the Frozen Summer event, but in fact they were worse. I never even got out of guest services before the trouble began. I spent over an hour there and had a long discussion with the Park Duty Supervisor who apologized and tried to remedy the situation(and really was very nice). They kept referring to their park policy that no one under the age of 18 may operate their rented ECV's. I won't go through our entire conversation here as I reiterated that it is his personal mobility device and a long slew of examples. The fix for yesterday was to put a blue tag on my son's scooter. He also said that they were giving a "one time exception" to the rule so we could enjoy our day. My response was "What happens next time? His scooter is not a one time exception, but a daily use item." The Park Duty Supervisor said that he can't make any decisions above that and that he understood completely and that someone higher up would be calling me in a few days. I don't want to start a debate or tirades of anti-Disney comments with this info. I still have faith that Disney will get this right. I have presented this info to make sure that I understand the ADA requirements correctly when I speak with Disney this week. It would seem to me that they would be out of compliance to refuse my son(or any child) to be able to use his personally owned, medically prescribed mobility device provided that it is not a device that doesn't meet the requirements for a mobility device(I know the Segway brought issue up) His ECV is a 3 wheeled Lynx L-3. I know that Disney would never tell a parent of a young child in a power chair that they could not use their chair in the parks. The scooter is my son's power chair right now. Is my understanding correct?

I am probably not understanding this but if you need an ECV and are providing your own then I would think that you would not even need to go by Guest Services. From everything I have read mobility and stamina issues are to be entirely solved by an ECV/wheelchair. A DAS is not given for those issues at all so you would not have to go in guest services to begin with. A rude CM out in the parks is very regrettable and upsetting but is something that could be ignored. Of course, it would be different if they threatened to make you leave the park or denied entrance to a ride.

 

[bairdbeth]

When the comments are made, the purpose is to have him stop and get out of the scooter as he is not allowed to drive it. We stopped at Guest services as there are other issues that are not addressable by using a mobility device so he does have a DAS to address those needs if we have to. Plus in May we were stopped(literally stopped) by CM's 4 times within an hour and a half. A comment here and there I can address or ignore, but to have to do so that many times is a bit unreasonable and certainly not how I want to spend my vacation.

 

[Mrsjvb]

I am probably not understanding this but if you need an ECV and are providing your own then I would think that you would not even need to go by Guest Services. From everything I have read mobility and stamina issues are to be entirely solved by an ECV/wheelchair. A DAS is not given for those issues at all so you would not have to go in guest services to begin with. A rude CM out in the parks is very regrettable and upsetting but is something that could be ignored. Of course, it would be different if they threatened to make you leave the park or denied entrance to a ride.

I can see where ANY CM could be confused about child operating their own ECV.. size is not always an indication of anything. so yes I can see being Proactive and going to GS and requesting a visible sign that this is privately owned ECV and as such exempt from corporate policy about rented ECVs and minors.

furthermore you cannot always tell at first glance whether an ECV is rented( from on or off site) which means the CM will assume that it IS rented and as such MAY NOT be operated by a minor. having stag that lets the CM know at a glance that this is indeed a privately owned ECV is a far better solution than having the child and his parents accosted every where they go.

 

[Ms_Butterfly]

Try writing/e-mailing Disney and asking for a written reply stating that it is not against the rules for your son to use his personally-owned medical device on Disney property. If someone questions you, show them the letter to prove they are in the wrong. I had to do this for an airline whose employee went against the rules, so now I carry the letter (they sent it through the mail, so it is on letterhead and has a real signature, though I carry just a photocopy with me) with me as well as have a scanned PDF of it on my phone and tablet. I have had to use it, too. (The time I asked for the letter after was not the first time the problem had happened, but was the worst time, so I knew I needed to get it in writing so a I would not have to keep writing e-mails to get the problem fixed/talked about.)

 

[Lisa loves Pooh]

Perhaps it is just me, but this extreme burden of proof placed upon the OP is unacceptable and against the law.

As this seems to be a repeated problem, I would be tempted to look into letting an ADA attorney handle it.

If they do make child size ECVs and if children do get prescribed them, I don't see how this will be their only time in dealing with this. I'm not suggesting a lawsuit, but sometimes havjng that attorney in your corner would be enough for Disney to adjust their policy and train accordingly.


Their policy for their own rents ECVs is irrelevant in regards to your sons prep am mobility device. They do not retain the right to extend that policy to children with similar properly prescribed and sized ECVs. If they did, they could also dictate who could utilize wheelchairs since they rent those as well.

Having to carry a corporate letter to prove you have permission that is not legally required is ridiculous. (The suggestion wasn't--but the idea that Disney would think this a suitable solution that sounds like an illegal solution since no other guest is required to prove they have permission to use their devices or aids.)

 

[Donna3271]

WOW! I am STUNNED! THIS IS A DISGRACE!!!!

My nephew has DMD as well. The Disney CM's have always been overly compassionate and helpful. I am just gobsmacked they treated you so poorly!

We will be back at Disney for the Marathon in January. We have a team and run for Parent Project MD. We have experienced such great accommodations and service toward our group.

Come Join us!! http://www.parentprojectmd.org/site/TR?fr_id=3320&pg=entry

Hugs to you and your little guy!

 

[bidnow5]

Sorry this has happened I would be very upset. I would go to guest services and ask for the general manager I wouldn't leave till it was resolved I would also keep telling them they are breaking the law

 

[Donna3271]

Beth,
I am posting again… I am just SO UPSET you experienced this!!! I just can't believe this. You need to keep me posted on the outcome… please, either here or PM me.


Warm Regards,
Donna

 

[bairdbeth]

Hi Donna! I am a part of PPMD too! (not running, but conference and advocacy) I have gone to Disney for years and for a few had to use an ECV for a back issue and an ankle issue. They were always accommodating and I had great experiences.
I also understand that children using scooters are not the norm. That is why I did suggest in my discussion in May using a tag (or even a name plate like strollers have- a certain color or design to designate this an ECV with a child driver) I also let the supervisor know in that discussion, that more kids with Duchenne are being prescribed scooters at an earlier age so that they can be more indpendent and keep up with their peers.
I intend to follow through on this issue this time and will get an ADA attorney if Disney cannot come up with an acceptable way to deal with this. I really do not want anyone else ending up dealing with this on vacation.
I will say that in the end before we were given the blue one time tag and went out into the parks, they were trying to kill us with kindness They brought my son a couple of new toys and gave my daughter a handful of fastpasses. I guess they didn't believe my answer when they asked what they could do that day to help make up for our time lost. I told them all I wanted was to have Disney go back to being my place to escape reality, enjoy time with my family and to renew my spirit with the Disney magic. The almost seemed incredulous that I didn't ask for something material that they could give me. That is not what this is about. It is about not being singled out, or being on guard that at any moment another CM may stop you again and you have to repeat your story. It is about being able to use the mobility device you use everyday while on vacation and being able to relax and have a great time.
Also, several CM's did look and check out the scooter, but did not say anything. For one I just pointed to the blue tag as she approached and she smiled and nodded. Only one actually said something and ironically it was while we were headed out of the park around 5:30. I simply responded that I had spoken with Roy that morning and pointed to the blue tag. She said"Oh, ok, great!) So I really think it is an easy fix.
I still believe in Disney and I believe that they will handle this

 

[SirDuff]

Perhaps I'm just really dense. But, if WDW doesn't rent to children than they, presumably, don't have child sized ECVs, right? So, if they see a child in a child sized ECV, isn't it obviously not a WDW rental? And, if it's not a WDW rental, can they say it isn't allowed?

 

[bairdbeth]

Unfortunately they do not make child sized scooters(I searched and asked 3 different vendor's and they say there are not any.) So the doctors suggest the smaller adult models or travel models. My son's scooter is an adult one (a smaller adult one) with the seat at the lowest setting. It also has a big metal container that is attached to the floorboard so his feet sit flat. The biggest difference is there is no RENT ME!! sign anywhere on it Since children grow fairly quickly he will grow into this scooter and eventually not need anything for his feet However even then he will still be under 18 driving a scooter.

 

[ladyjubilee]

I don't know if it would help, but we didn't like how industrial my sons stroller looks.... so, we pretty much took it apart, spray painted it with a better quality spray paint, put it back together. Then let my son pick out fabric, customized his seats... anyway, it no longer looks like every other stroller and definitely looks 'owned' and not rented. The other benefit is that it looks more less industrial which seems to make people more comfortable, and more likely to talk to and interact with my son.

So maybe that is a way to build on the decoration idea which lets the CMS know it isn't rented.

 

[SueM in MN]

Perhaps I'm just really dense. But, if WDW doesn't rent to children than they, presumably, don't have child sized ECVs, right? So, if they see a child in a child sized ECV, isn't it obviously not a WDW rental? And, if it's not a WDW rental, can they say it isn't allowed?

WDW only rents adult size ECVs. The park rental ones are huge, pretty distinctive looking and have very little ability to be adjusted, so it's pretty obvious from looking at them, that they are too big for a child.

And, as bairdbeth mentioned, the off-site rental ones are also pretty easy to tell - they have something that says the company name and phone number, usually say RENT ME! and, I've even seen done with a little basket for rental company brochures.

Also, as bairdbeth mentioned, they don't actually make child size ECVs; children usually are using one of the smaller sized ones made for adults. It's usually pretty obvious that a child is using it though because the seat and the tiller (what you drive with) will be set in positions that would be pretty impossible for an adult to use. And, depending on the size of the child, they may also need the floor built up so their feet aren't dangling.

It's kind of weird that on our trips in recent years, we've seen kids not stopped who are obviously driving Grandma's ECV (a child sitting on her lap or standing between her legs to drive is kind of a dead giveaway), while this 8 year old, driving an ECV adjusted to his size, was stopped. And, not just once.

 

[Mrsjvb]

Perhaps I'm just really dense. But, if WDW doesn't rent to children than they, presumably, don't have child sized ECVs, right? So, if they see a child in a child sized ECV, isn't it obviously not a WDW rental? And, if it's not a WDW rental, can they say it isn't allowed?

as I said before, size is not always an indicator. I was in a WC full time from when I was 6 to about 12. and towards the end of that, I was in a full size adult chair. many of my peers were also using full size mobility aids( I pre date the ECV yes I am that old)

Furthermore you CAN rent smaller sizes from off site. smaller persons but of legal age to rent/operate often choose the smaller/child sized devices. many of the off site companies also have the same rule about only adults 18 and up. and we all know that there are individuals out there who will bend any rule to its breaking point if it suits their agenda, regardless of policy.

I don't find it an unfair burden to make it obvious that my chair is MY chair and not rented( although I am renting from off site this week as I don't want to drag mine along with me on the plane) My friend , a former SEAL who was diagnosed with ALS after his retirement and used an ECV up until his death last year, had his all tricked out, special paint job on the batteries, custom fabrics on the seat, the whole nine yards. anyone can hang a christmas wreath with battery operated lights off the back( saw that on a cruise) of any rented ECV. Having a hand painted Marvin the Martian stenciled on your personal one makes a far more eloquent statement

 

[WheeledTraveler]

You'd think they'd have figured this out by now. I have a friend who was prescribed an scooter when he was a kid 25 years ago (for cerebral palsy, so it's not just DMD where scooters are being used). It's more common now for kids to be using scooters, but it's definitely not something that only started in the last few years.

If you can't get a satisfactory response from Disney, I actually think the suggestion of consulting with a lawyer is a good one. You don't have to do anything with that info, but you should be able to get a single appointment consult for free that will let you know what the options are. It might also be worth asking around to see if you can find anyone else who has had the same problem at WDW as you have. As you know, this is a much bigger issue than just your family which is why a lawsuit might even end up being the way you have to go. I'd also suggest, if possible, printing out the relevant part of the ADA to show CMs at GS if the problem continues.

I think part of the problem is that WDW doesn't have a written rule about use of personal mobility aids (other than the Segway ban). There's nothing to tell CMs that "children using their own personal ECVs are welcome to do so in the parks". They fall back on the only rule they do know which is the one about WDW rentals. It might also be worth calling some of the offsite vendors to see if they've given permission for WDW to say anything to offsite renters misusing their ECVs. Some of the offsite vendors rent ECVs that are also models commonly used as personal ECVs and not all the vendors make it clear that it's a rented ECV (most, but not all).

I do still like the idea of blinging out your son's scooter. If your son doesn't want a blinged out scooter all the time, you could also make removable covers for the seat back or other parts of the scooter. Then he could switch them out based on what he wants or where you're going. He could put stickers on them or just use different fabric patterns or a whole host of things. You could also do something like LED light strings to outline the ECV. Those are useful for seeing him at night and fun Personalizing mobility aids is fun and, IME, very useful at any age.

 

[2tinkerbell]

I am sorry that you have had that experience. I appreciate your attitude in obtaining information prior to your call with Disney. I have learned that information is power. Sue gave you the correct information.

The flip side is that I also appreciate Disney CM's questioning your child an ECV. It seems that children driving grandma's ECV has become a big problem. Driving an ECV isn't as easy or fun as it looks and can be a real danger.

That said, it appears that when you had the blue tag, things went better for you and especially your son. It shouldn't be a struggle to get the blue tag at GS every time and it shouldn't be a one time thing. It also seems with the DAS that Disney has a way of keeping you "in the system." If I were talking to Disney, I would be recounting with them the hassle getting the blue tag and also using the examples of how the blue tag was working. I would ask that getting a blue tag for your sons ECV should be put into their system so you don't have to do this every time in every park.

I hope your conversation goes well and that you and your family continue to enjoy Disney.

 

[Donna3271]

Beth,
off topic… so glad you are part of the PPMD Family. We just did a cruise with our guy, and Disney was so WONDERFUL! He did the Castaway Cay 5k with me in his power chair. He was my pacer!

Thank you for advocating this. I understand your feeling of always having to be "on guard". One little comment from an uneducated person can ruin your whole vacation.

Hugs to you!!!
Donna