Scooters and Down Syndrome

[LisaBi]

Looking for ideas here. DS23 has DS and absolutely cannot walk the parks. For years I've pushed him in a wheelchair. But now I'm at a point that while I can still (barely) walk the parks myself, I can't push him. The only way it's going to work is if he can use a scooter or find some other way to get around. But he doesn't have the cognitive skills to drive one. I've tried some at local stores with little success. Then add the crowds at WDW to navigate, and it looks like a disaster waiting to happen.

Does anyone have any ideas or experience to share?

 

[redberyl]

If you can afford it, hire a helper to push the chair. Not ideal, hopefully others will have better ideas

 

[Betty Rohrer]

hire someone to push chair or bring a friend with you. only other possibility is to keep practicing at stores and malls in hopes that it gets better.if he is involved with any work or other programs ask them if they have any ideas to help you

 

[DisneyOma]

He could use a walker, or a rollator?

Shorter times in the parks with a good rest in between?

 

[gap2368]

Could he go between sitting and pushing the wheel chair and do it that way. Also take long breaks so you both can rest

 

[RubySue]

It doesn't sound like a scooter is a good option. I'm an experienced scooter driver and getting through the crowds at WDW requires a lot of concentration and sometimes quick reflexes.

I'm not an expert, but I seem to remember people posting here about power assisted wheelchairs that can be operated by the person behind. Maybe these can be rented?
Anyone here know if I am remembering correctly?

 

[SueM in MN]

It doesn't sound like a scooter is a good option. I'm an experienced scooter driver and getting through the crowds at WDW requires a lot of concentration and sometimes quick reflexes.

I'm not an expert, but I seem to remember people posting here about power assisted wheelchairs that can be operated by the person behind. Maybe these can be rented?
Anyone here know if I am remembering correctly?

No.
There is not a type of motorized wheelchair or power assisted wheelchair that can be rented.

 

[TheRustyScupper]

Does anyone have any ideas or experience to share?

1) Alas, you are coming to a point where alternatives are slim - and expensive.
. . . you might be approaching to the time of ending WDW vacations
. . . not everyone can be accommodated, or accommodated at a reasonable cost
2) The only method, as already described above, is to hire a companion to push the chair.
. . . you cannot use an ECV to pull a chair-wagon-conveyance, so not an option
. . . the person needs to have good skills to operate the ECV themselves, so not an option

 

[Pridemom]

Can you use something like this? It powers the chair, but is controlled by the attendant. http://www.vanosmedical.nl/en/excel-click-go-professional-ii.html

 

[Hiitsme]

If your son is supported by an outside agency like the ARC http://www.thearc.org/ you maybe able to use their services. The company I work for pays for staff's trip, meals, and we get 8 hours of pay per day when we accompany folks on vacation. If this is the case you could have the help you and your son need for your trip for free! I hope this info helps you and your son have a magical vacation.

 

[Hiitsme]

Oops, I forgot to add that since he's over 22 you should have adult resources available. That is why I mentioned the ARC. I don't know if you have a local branch but, I'm sure where ever you live there are agencies to assist you.

 

[Bete]

Outside services will probably cost around $20/hour. In addition, you are expected to pay their park admission and meals if you eat. Most of the time they expect a gratuity, too.

Bringing a helper friend or relative will require room accommodations for the three of you. Although, you may find someone you know to push the wheelchair I believe most will want their own space for sleep. You would have to probably provide meals, park tickets, air fare or whatever means, and accommodations for this helper.

I agree with the above poster that there may be an organization that could help out. I'm not with any ideas on that count.

Finally, although it may be hard and difficult you could continue to push the wheelchair and do short days in the park with a lot of rests as already mentioned.

Disney World to me is one of the toughest places to navigate a scooter especially using Disney transportation. Also, it's not easy to handle all the pieces in and out of a car on your own of a scooter especially Doing it yourself. It's difficult maneuvering through ride queues let alone the park. If you hurt someone this could lead to lawsuits.

Maybe, consider a different vacation that you could manage better. I'm sorry there isn't an easier and better answer.

 

[Hiitsme]

The company I work for doesn't charge the family to accompany a person supported on a family vacation. We encourage it and make sure they get to go. If the son is receiving services there is way for this family to go to Disney. I wouldn't recommend an outside agency, but one they are currently using, who are familiar with the family and know the son's needs. We have a manager who flies from the North East 4 times a year so the person we're supporting can spend holidays at their families condo in FL. The company pays for the manager's flight. We've helped people go on family reunion cruises. Staff's trip paid by company. So, please don't attempt to tell this person "Maybe a different vacation" just because of her son's needs. There is always a way!

 

[DisneyOma]

Can you use something like this? It powers the chair, but is controlled by the attendant. http://www.vanosmedical.nl/en/excel-click-go-professional-ii.html

Is that a real company? The typos on that page are dreadful -I'd be very, very cautious in doing any kind of business with this business.

 

[redberyl]

Is that a real company? The typos on that page are dreadful -I'd be very, very cautious in doing any kind of business with this business.

It's based out of the Netherlands, typos are probably just a translation issue. Would be worth checking into to see if there is a similar company in US

 

[blondietink]

We live in New York State and we have been told that since my sons' (yes there are 2) services are paid through NYS Medicaid, then the only place NYS will pay for staff is within NYS. So, whoever has a company that will pay for staff to accompany them, kudos to you. If we go on vacation out of state/country, we either have to do everything ourselves or pay somebody to go with us. This means airfare, tickets, food, lodging is all on us for the extra person.

I know of a family whose son has CP and uses an electric wheelchair. However, the son has never in 25 plus years been able to drive the wheelchair himself. The father or staff person usually walks alongside the son and uses the joystick themselves.

I understand your dilemma. My DH is now 70 with arthritis and we have discussed how much longer he can push the wheelchair. He will need a scooter soon himself, which leaves me pushing 2 wheelchairs. Guess I will have to become Wonder Woman! Or WDW will become a non-option.

 

[PatMcDuck]

I have not reached this point yet, I am 56 and DS (autism and Down Syndrome) is 26. But, I think about it. I push DS in a Convaid chair at the parks, and sometimes it is really really tough. Not to mention all the other stuff, like showering him, dealing with his toileting problems (he gets ALL out of whack on vacation with occasional disasterous results.)

I actually just ordered DS a new Convaid chair, his old one weighs 48 pounds (I weighed it last week). New one will weigh 29-30 pounds. I am so excited for the new chair, it really means so much, because I think I can get it on and off the bus. It means more years of Disney trips for me and DS, that heavy chair was getting to be too much for me.

I take Sean to WDW or DL twice a year, because I worry about the future when I will not be able take him, sometimes. For now, we are good to go, and I can handle it. (I am lucky, because Sean has siblings who may be able to help in the future as well.)

 

[SueM in MN]

We live in New York State and we have been told that since my sons' (yes there are 2) services are paid thru NYS, then the only place NYS will pay for staff is within NYS.) ...
I know of a family whose son has CP and uses an electric wheelchair. However, the son has never in 25 plus years been able to drive the wheelchair himself. The father or staff person usually walks alongside the son and uses the joystick themselves.

other people have written the same thing about payment, so I would check carefully and not assume care will be paid for.

Regarding the power wheelchair, I would guess that the family may have paid for it themselves or the person was able to use it at one time and lost ability.
A big part of the evaluation process for payment for a power wheelchair is justification, whether insurance or another payor. That includes proving that the disabled person would benefit from the power wheelchair and is able to use it independently. The evaluation of being able to use it involves observations of the person using it.

I have not reached this point yet, I am 56 and DS (autism and Down Syndrome) is 26. But, I think about it. I push DS in a Convaid chair at the parks, and sometimes it is really really tough. Not to mention all the other stuff, like showering him, dealing with his toileting problems (he gets ALL out of whack on vacation with occasional disasterous results.)

I actually just ordered DS a new Convaid chair, his old one weighs 48 pounds (I weighed it last week). New one will weigh 29-30 pounds. I am so excited for the new chair, it really means so much, because I think I can get it on and off the bus. It means more years of Disney trips for me and DS, that heavy chair was getting to be too much for me.

I take Sean to WDW or DL twice a year, because I worry about the future when I will not be able take him, sometimes. For now, we are good to go, and I can handle it. (I am lucky, because Sean has siblings who may be able to help in the future as well.)

hope the new chair works out well for you.

Our daughter's old manual chair was at least 10 pounds heavier than her current one. We were able to feel the difference in pushing it. You will hopefully notice a big difference

 

[blondietink]

Hope the new Convaid works for you. Wow, those things are expensive! We just use a regular travel chair for our son with DS. Weighs 19 lbs. and costs $150.00 or less.

 

[PatMcDuck]

We were able to order a 18" Metro, with headrest,which is less $$. The older chair is a Convaid (cruiser) Scout, transit model, that I bought used. The new one lacks the handbrakes, which has me a little worried, but we will see. (I realized most WC do not have handbrakes an those folks manage not to run into others going downhill). It also lacks the armrests, which should not bother DS, and does not have the tie down rings, which we never used anyway.

We had a transport chair, but DS also has sciolosis and leans forward in those, to the degree that he is looking at his own legs while pushing him. The Cruiser and Metro Convaid chairs have the 30 degree fixed seating, much like a stroller, which has him upright even if he leans a bit forward. I want him to look around on outings, and enjoy the sights. He is a super Disney fan after all.