Questions about trip to DW with MAW

[paulamyers]

Hi Me and my daughter are going to DW sometime in august through maw. I live with my parents and they said they can't go with us. My question is even though MAW will not let my parents go can they stay with us at GKTW. I called our MAW and the lady I talked to was real rude to me on the phone. She said she discourages grandparents from going, but my mom will be a great help. My daughters dad might go (he is having problems.....He is a drug addict) so i don't know if I want him to go anyway. We have limited funds and so does my parents so I was wondering if anyone knew if gktw did that for families.
Also do MAW normally throw parties for the child before they leave?
Do they provide transporation to the airport?(I don't have DL so I am not sure what they will do)
What kind of gifts do they give the child while there? I ask because I don't want to buy my daughter something and then they give her the same thing.
THanks for all your help I really do appreciate it.

 

[wendygrace]

I'm sorry you had a rude person at MAW. Do you have a wish grantor yet? They're the ones who come to your house and talk to your daughter? Have you talked with them? It is true that they usually do not allow grandparents to come along. I have heard of very few exceptions.

Each MAW organization runs their own way and your wish grantor should be able to tell you what they fund. Ours is funding our trip to and from the airport, the flight, and a rental car, as well as our expenses while in Orlando. Have you told the wish grantor you don't drive? The do provide gifts from my understanding but I don't think it would be anything that you would probably buy in advance.

good luck to you. I hope you get the assistance you need with MAW.

 

[Cheshire Figment]

Hi Paula and to disABILITIES and DisBoards!

You might want to look at some of the other threads in this Forum. At a quick glance I noticed at least three dealing with Wish Trips, MAW, and GKTW on the first page of the threads listing.

I have never dealt directly with MAW, but lots of people here have. I will sort of reiterate Wendy's question; was the person on the phone the "wish grantor" or somebody administrative? If the WG you might want to talk to the Director to see if you can get a different person, if it was someone involved with administration you might want to discuss what happened with your WG as it sounds like they have a very negative person working, which is not good for that type of organization.

 

[SueM in MN]

I have heard of some children who did get their grandparents to come as part of their wish. As was already mentioned, how things are handled does seem to differ a bit between the different MAW chapters and the wish granter assigned to your child would be the best one to answer the questions.

 

[dclfun]

I've seen vast differences in how each MAW chapter handles a child's wish- from allowing ( or not allowing )additional family members who live in the same home, to allowing ( or not allowing ) a caregiver to come with the child if there are several children and one parent, for instance...all the way down to the length of the wish and the funds given. I can only figure that budgets are different for each chapter. I have read on this board though that a few folks have brought grandparents who paid their own way. The Wish chapter has to make that decision though- not GKTW. Has anyone talked specifically to you about the trip? It's my understanding that during the pre-trip party you get most of the details and the spending money. I personally thought MAW was a national organization and that funds/ policies would be the same for each chapter but it seems more like it's on a local level. Just remember it's the child's wish and that's who they are focused on.---Kathy

 

[SueM in MN]

I personally thought MAW was a national organization and that funds/ policies would be the same for each chapter but it seems more like it's on a local level. Just remember it's the child's wish and that's who they are focused on.---Kathy

Someone who was in a state MAW chapter posted a long time ago that they were all the same and followed the same policies, but I know in Minnesota a few years back, the MN MAW had been doing things a lot different than the other chapters, then the national organization wanted them to change. Rather than change, most of the Board resigned. The news articles that came out at that time pointed to there being some general guidelines, but each state did things a little differently.

I think your last sentence is important. If your child and you live with the child's grandparents, it might be the child's wish to share the trip with the grandparents.

 

[MarieS]

Hi! Like other posters here I think you should call your MAW chapter and find out who your child's wish granter is. For my boys wish we dealt with the same person throughout the process. This would be the best person to answer questions. From reading other threads, it seems different chapters handle things differently.
For us, our MAW covered transportation( are you flying?), our stay at GKTW which included breakfast and dinner, and park tickets. Our MAW also gave us some money for lunch( and souvenirs) which I used for character meals. ( I booked these myself before the trip). I have heard that some chapters have a farewell party, but we did not since we live in another part of the state. My boys did receive a package before we left though. They also recieved several surprises at GKTW. These treats depend on donations from individuals and corporations so they are always changing.
GKTW was fabulous and the people there were wonderful! Once you are able to speak to your partciular wish granter I'm sure you're questions will be answered. Have a great trip!

 

[paulamyers]

I did talk to our wish granter she just called friday and said our trip would be aug17-23. I told her I didn't think her dad was going to go. She said that all they would still pay for is just me and her then. So It looks like I am going just me and my daughter. I am going to contact GKTW and ask them if my mom can stay with us there if she pays for everything out of her pocket.

 

[paulamyers]

We got our dates we are going august 17-23 anyone else going at that time....

 

[mindymouse1]

I have heard of people "convincing" maw to let another person go with them especially a single mother. I would try to talk to them some more about it especially if there was already supposed to be someone else and now there is not (obviously it was not the funding issue). Good Luck.

 

[dclfun]

It still makes me wonder what the issue is at your maw chapter- is it funding or is it just their policy. I wouldn't push too hard- I've been told by a friend who works with maw that they are discouraged that some see it now as an "entitlement program", but on the other hand it's your daughter's wish and you want to be sure it ends up being something that is really special and what she has been looking forward to. Hopefully they can be included if they pay their own way. I don't really understand the funding since it seems to vary so much- I know of one family who received a wish that OOP would have cost over 35K and then again for another one of their children for over 20K ( and their children do not have a life-threatening illness ). I just hope the OP and her daughter have a magical vacation either way.---Kathy

 

[4eyedbuzzard]

First, to Paulamyers, I hope your daughter and you (and family if they can go) have a wonderful visit to WDW and wish you and her all the best.

And...

...I don't really understand the funding since it seems to vary so much- I know of one family who received a wish that OOP would have cost over 35K and then again for another one of their children for over 20K ( and their children do not have a life-threatening illness )...

If they don't have a life threatening illness why did MAW fund their wish? I seem to remember "life threatening" being in MAW's mission statement and also being diagnosed as such in their funding criteria. Perhaps they had life-threatening conditions and recovered? Many MAW recipients do recover - but they are supposed to have life-threatening conditions to be considered for a wish. I hope the children mentioned were such examples, as abuse of both private and public funding for truly eligible recipients is strained and placed in jeopardy by those who abuse these charities and services. Any doctor who would aid in abusing this system by providing a false diagnosis ought to strung-up by their stethoscope.

And just FWIW, $20K and $35K is pretty steep unless there were major medical transport or life support issues - the average "wish" costs approximately $6200, per the MAW foundation. While the cost of a wish is not stated to necessarily be a determining factor, the reality is that MAW funding resources, like all other resources, is a finite one. The funds are NOT unlimited, and rely upon the generosity of private individuals, corporation, and often "in-kind" contributions relating to the wish(such as WDW tiks or packages, airfare, etc). The ability to continue to provide this wonderful opportunity for those who are legitimately eligible depends to a great upon the integrity of the requestor and the treating physician. Abuse of the MAW Foundation threatenens the perceived integrity of the organization, and ultimately its ability to raise funds and provide this wonderful service to those who are legitimately eligible.

Sorry, but there is a tremendous amount of abuse of both public and private programs such as ADA, MAW, etc going on and it really angers me. Too many people don't seem to realize that if these programs and systems are abused that it lessens their ability to help the very people they were designed for.

/rant

 

[Cheshire Figment]

Sorry, but there is a tremendous amount of abuse of both public and private programs such as ADA, MAW, etc going on and it really angers me. Too many people don't seem to realize that if these programs and systems are abused that it lessens their ability to help the very people they were designed for.

/rant

Last November the family of one of my grandnieces was given a wish trip. My understanding is that her illness is not life threatening but is serious and you may never lose that particular illness. Also she is small for her age.

She and her 5 year older twin brothers are both into Disney and even more into coasters. The family (of five) was given a trip by MAW from the New York area to Tokyo, where they spent time in three hotels and went to five parks, including TDL and TDS.

I have no idea how much this cost, but my thoughts are, when you consider air fares, park entries, hotels, etc., (and an interpreter/driver was provided for them), it would have easily been more than $20,000.

It appears that it is up to the local chapter to loosen the criteria, if they desire. It is also up to them to determine the level of funding.

I even volunteered to come along (at my own expense, meeting them in Tokyo).

Anyway, this is not really the correct forum to do a rant against service people are receiving.

 

[SueM in MN]

here's what it says on the National Make a Wish website about granting wishes.
Step 2: Medical eligibility
We determine a child’s medical eligibility with the help of the treating physician. To receive a wish, the child must be diagnosed with a life-threatening medical condition – i.e., a progressive, degenerative or malignant condition that has placed the child’s life in jeopardy.

The website also indicates that "the child's treating physician makes the final determination of whether a child's medical condition qualifies him or her for a wish."

So, the criteria are not completely clear and there is room for interpretation about exactly what a "life-threatening medical condition" involves.
We are not the deciders or the ones who are privy to the child's medical information, so I agree with Cheshire Figment that

Anyway, this is not really the correct forum to do a rant against service people are receiving.

Please, no more discussion about whether or not services that people receive are 'warrented'.

 

[dclfun]

The issue for me was about the cost and policy restrictions either being on a local or national level. I don't understand why one child's wish would entail a greater or lesser expenditure than another ( other than size of party and type of wish) and if the OP couldn't bring along the grandparents due to cost or if it was just their policy only to allow immediate family, excluding the older generation. If it's a policy issue then hopefully they can pay their own way and still go, but if it was cost then perhaps they are restricted by what is allotted for their party. I wasn't questioning the services anyone has received or their right to have them, just wondering about the above since I have seen a lot of differences in who has been allowed to go at the expense of the wish chapter and what has been allotted for each "wish". My son will (hopefully) be getting his wish granted to visit his sister in Boston and go to a Red Sox game. We're trying to see if he can go by himself as for me to go along it would greatly increase the expenditures. If he goes solo, he can stay with his sister ( as he wants to do) and visit some places that my wheelchair can't go. If I go along it means a hotel room, a lift rental van, and another purchase of airfare. Since it's his wish and not mine and I think he'll have just as much fun without me (and will have time and privacy to confide in his sister about his illness ), then I'm hoping his chapter can allow this based on their rules and policy. They are checking but again I'm not sure if it's a local or national issue and whether this exception will be allowed. Back to the OP...I just hope that you can be accomodated so that both you and your daughter will enjoy the wish as it should be something magical vs. having any kind of stress. ---Kathy

 

[SueM in MN]

I wasn't questioning the services anyone has received or their right to have them, just wondering about the above since I have seen a lot of differences in who has been allowed to go at the expense of the wish chapter and what has been allotted for each "wish".

I think the questions about the differences in how different chapters do things is a valid question. I just do not want this thread to go down the path of 'rights' to services, as it seemed to be going that way.

From what I have seen when people have posted about their wishes, it seems that different chapters do, indeed, do things differently, despite being part of one organization. I do think it would be nice to know what is required by the national chapter and what is at the discretion of the local chapter in terms of how the wishes are granted (i.e. grandparents allowed to be included - paid for by MAW or by the family).

 

[Kirlinale]

From what I understand and this is the policy I know to be pretty standard..

"Chapters shall include in the wish the wish child's parent(s), guardian(s), and siblings under the age of 18 who reside with the wish child when requested by the wish child. All other potential wish participants are approved on a case-by-case basis including: older siblings, siblings who do not reside with the wish child, grandparents, other relatives who reside with the wish family, step-parents and step-siblings, and others not mentioned. "


The reason for this I understand is budget, they want to give all the children possible a wish, and usually have to work within a budget and the budget is a Chapter by Chapter thing so in order to keep money working for the kids they level it to the immediate family only. I do know a few cases where G-Parents were Approved and a few where they weren't but were offered some discounts.

If you are not including the father and no other addtional family memebers then mabye have your child tell the wish grantor to allow her to come and it would be that case by case issue mentioned above.

I am sorry you were treated rudely, there is no reason for that. If you continue to have issues then I would seek higher level help from MAW. I do know however the choose to deal mostly with the kids directly and asking them what they want , need etc..

HTH.. Nicole

 

[5dwarves]

I know one child whose wish was to have a trampoline. $500 later he was happy and didn't want anything else. Wishes are subjective. We are so fortuante there are organizations like MAW, GKTW and Disney who help us make wishes come true for children who have been, or still are gravely ill. I was extremely grateful that our wish included my other healthy children and my DH, my kids' stepfather. They have been through a great deal as well, and have done without a lot (to include my attention sometimes), because their brothers' health needs have been first and foremost. We all need a little magic to erase the stress....

GKTW has their own website with a lot of information on it, as well as their contact information. Admittedly I spoke with a somewhat abrupt person when I called with my questions, but who knows...everyone has a bad day, and she could have been very busy at the time.

I hope you and your daughter have the most memorable time ever!

 

[iloveelias]

when in august are you going? we are going 8/19--8/25. See ya there.......

 

[5dwarves]

Paula:

We just got back from GKTW. In conversations with some of the volunteers, I met people who have frequently gone to the parks with single moms to help them maneuver around. One woman in particular said that she makes sure she gives the family their space, but helps them figure out how to deal with all the sensory overload that is going on around them.

You may want to call GKTW ahead of time and ask if they wil arrange for a volunteer that can accompany you to the parks if you are worried about going on your own.