Shall we all do something to support MN families with disabled children?

[SpeedyGonzalez]

I've been on a very brief discussion with a couple of MNers about the needs of families challenged by children with disabilities. Following on from Riven's heartbreaking post a few weeks ago and the ensuing news story, I would love to see us as a community do something more to help such families.

Obviously there's a limit to what we can do, and there are so many families across the country that need help - sadly we couldn't possibly help them all. So I have come up with the following proposal, which I would love the whole MN community to think about and decide: (a) whether you're interested; (b) if so, whether you can offer suggestions to make it work better:

1. I propose that we as an online community raise funds through individually-organised sponsorship activities to support the families in our community who have children with disabilities
   

1. Though initially this would be a one-off in 2011, if it works well it could become an annual project
   

1. Recipients would be selected initially from the people who post on the SN boards - we could choose, for example, everyone who's contributed up to the date that Riven's story hit the press. That way we could initially avoid people joining the boards under false pretences to get a free cash handout. If we repeat the fundraiser in future years we can discuss ways to manage selection of new recipients at a later date.
   

1. The award will not be 'means-tested': the families deserve dignity. I propose that we simply divide whatever we raise equally among the selected families and leave them to spend it as they see fit.
   

1. To minimise admin, I propose that we use a fundraising website such as JustGiving, to collect ALL donations. We'll set up a single section on JustGiving where every fundraiser adds their own page, so that we can see the whole project on one weblink. The site takes a fee from all donations, but it is an excellent way of ensuring as much transparency as possible about exactly how much has been raised.
   

1. We'll also set up a thread once fundraising has closed, to discuss/ present information on how much we'll be giving to each family (again for the purposes of transparency). It seems appropriate to me that we should not reveal the names of recipients online but if they wish to do so themselves they may.
   

What are your initial thoughts? I have never organised anything like this before, and you can probably tell that I've just scratched out some ideas on the back of an envelope. I welcome as wide a range of views as possible, so that if people are keen we put many heads together to make it work. I'm more of an ideas person than an organiser (and certainly not an administrator - I have a well-fitting admin dunce cap) so we'd need a small multi-skilled team to get it off the ground.

I also think we should keep it as admin-lite as possible (possibly because I'm allergic to admin ) - hence people organising sponsorship activities by themselves, and the use of a fundraising website.

What are your thoughts? Please offer BOTH criticisms and constructive suggestions. Anyone caught not doing so shall be placed in detention.

Thank you!

[GypsyMoth]

i prefer the ideas of mumsnet supporting ALL families....sorry,but i do!

saying that,i'd probably join in with anything you organise!

[SpeedyGonzalez]

Why's that, tiffany? Btw you're teetering on the detention line at the mo...!

[wannaBe]

I have a few issues with this.

Firstly, how will you decide who benefits? Ok so let's say everyone who posts on the sn section benefits, are you going to make the money dependent on the type of disability? so for example would someone with a child who has severe and multiple disabilities receive the same donation as someone whose child has a less severe disability? In which case who is going to be the one to make that decision. While having a disabled child is hard for any parent, I wouldn't necessarily equate that with the need for money.

Secondly, how do you know that the people you are donating to are genuine? The reality is that we don't know anyone on here, and just because someone is a regular doesn't mean they are who they say they are. Raising money for a complete stranger is, IMO, complete madness.

Thirdly I have a real issue with just handing over actual money. Firstly I think it's actually quite patronising, but again to come back to the question of whether someone is genuine, if you were raising money for something in particular that would mean that certain people - the intended recipiants would be able to benefit, and there would be no chance of fraud.

There is also the issue of participation. A couple of years ago I tried to organise a similar fundraiser to raise money to purchase bikes/trikes for severely disabled children such as riven's dd and 2shoes' dd etc, but with the aim to make these bikes more widely available, not just for children of mn'ers. I had a couple of threads but the reality is that people just weren't interested. Lots of people will attend a fundraiser, but most don't actually want to be involved in organising one. Also lots of people will help raise money for a cause, I don't think that if you went to the local community and said "we want to raise money to give cash handouts to some people on a website, who we've never met," they would be very forthcoming tbh. (obviously I don't imagine you would use that exact wording but the principle is the same.

There are already several disability-related charities who desparately need funds. it would perhaps be a better idea to nominate some charities and do a fundraiser with those charities in mind rather than just doing it for cash. That wa you also wouldn't have to administer distribution, and it wouldn't be limited to mn'ers.

[GypsyMoth]

detention would be good.....free childcare!!

SN has its own hidden topic,so i actually dont know/see who posts there or their dc disabilities. sometimes we hear of posters,such as Riven,but she was alot more than a mum of a disabled child. many of her posts were about other things. i coulddn't even name another MNer with a disabled child!! (possibly 2 shoes?)

i'm more aware of the MNers in chat/lone parents where i post more. sounds selfish i guess,just my initial thoughts.

[GypsyMoth]

bump for you!! >>helpfull

[GypsyMoth]

And another!

[amistillsexy]

What about those of us who spend time on MN to AVOID talking about their DCs disability because it's the only thing they do all fucking day long, and they come on here for a bit of light relief and to feel like they have something to OFFER to the world instead of always being in the position of taking things!

I have a DS who is disabled, and has complex needs. I don't post on the SN boards because it would just take too bloody long to explain to be honest, and I don't want to post long and boring stuff giving details of the last 7 years nor do I want to drip-feed a thread.

However, I have (on occassion) alluded to my son's disabilities. Would this mean I was eligable ('proof' being that I posted before Riven's thing blew up).

I was actually going to post for support the night that I logged on and read Riven's OP. I held off, folowing her thread, and to be honest, I would have hated it if that sort of publicity had happened to me.

I think it is a great idea to get MNers to support us, but TBH I think the best way to do this at the momnet is to get behind the campaign to keep DLA. It is literally our lifeline-without it, we would not survive as a family. I had to give up work as the trials of getting DS to school and keeping him there have meant that I could not be relied upon to be there for my job .

DLA is a 'key' into all sorts of other things, from Carer's allowance to help with buying a suitable car to getting a queue pass at a theme park (apparently-I've never been! ).

If MNers really want to help us, they will *lobby their councils not to cut essential services and support groups,
*lobby their MPs to keep benefits for the disabled as they are, and
*lobby their schools to be more bloody inclusive and understanding of the needs of the families of disabled children so they don't end up like ME!
(getting rather angry that DS has been out of school since November and only 1 school has agreed to speak to me about taking him on out of the 30+ that I've contacted!

Sorry, OP, I don't mean to pour cold water over your idea, which is lovely and so obviously from the heart, but to be honest, if every MNer did the lobbying things above, and maybe made friends with a mum with a 'quirky' child like mine (instead of avoiding us a sthough it was catching ), they would be doing alot to make this country more inclusive.
X

[SpeedyGonzalez]

Ah, well thank you all for your posts. I can see that it would be far more complex than I'd realised to arrange - stillsexy it never occured to me that there might be people, like you, avoiding the SN boards. I wouldn't want you to be excluded just because you've chosen to do that.

For that reason plus having just seen poor Rinder's current thread, I think it's best if I drop this proposal. There are so many people fighting one thing or another, it would be awful if it looked like one group was being singled out. 'Twas just an idea. Sigh.

Good suggestion to back the DLA campaign. Stillsexy, I am appalled at the schools' response/ your being ostracised by other parents.

[Goblinchild]

'maybe made friends with a mum with a 'quirky' child like mine (instead of avoiding us a sthough it was catching ), they would be doing alot to make this country more inclusive.
X'

Best and most useful thing anyone can do for a parent and a child with additional needs.
Not even best friends. just a bit of tolerance and understanding. Worth more than cash to most in my position.

[madwomanintheattic]

not keen at all.
despite the fact i've posted on the sn board for a good few years.
i really don't think that a (board of selected?) mners digging around the sn board prior to the riven debacle to see who's going to win the 'lucky few' lottery is a dignified response to a very real problem.
sorry, but no.
glad you have sacked the idea.