Why nothing for us!!!!

It really annoys me, my brother has CMT and there is a weekend expecally for him and he found his gf there who also has CMT.

I have High functioning Autisim and there is nothing for us, no weekend meetup that takes place every year. Wouldn't it be great if we could atcually have something like that, i might of met a girl if that had happened

Parents
  • How limited is limited? According to the 2015 - 2016 NAS Annual Report:

    Total income £98.7m. 

    Income from donations £6.3m.

    84% of all income from statutory bodies (the government).

    It is probably safe to say that the total income for the NAS is greater than the total income for all other ASD organisations in Britain put together.

    It's probably safe to say that most, if not all of the government allocation has significant strings attached, these have also got much more prescriptive post Kids Company. That funding will be provided on the basis that it is used for specific services for those at the more severe end of the spectrum.

    It could be argued that the NAS is less of a charity, in the traditional sense of the word, and is more of a government service provider. IMO if charities receive more than a certain percentage of income (about 25%) from the government then they should be forced to deregister as charities and become businesses instead. 

    Why though, what’s the point? If they don’t declare a profit and try to issue a dividend then they won’t function differently, apart from having considerably less oversight.

    The income from donations is a drop in the bucket of the total NAS income. This raises questions whether it is actually worthwhile for people to do fundraising for the NAS or whether the money would achieve much more for people with ASD who are currently poorly served by the NAS if it was instead donated to another smaller ASD organisation.

    It depends how you look at it, in some ways it is, in others it isn’t. Fundraising is also about raising awareness, those additional funds also allow the NAS to do things outside of its government mandate, without those it can’t work in other areas, similarly its operations wouldn’t be significantly impacted by the loss of the funding from donations. Similarly cancer charities despite claiming to fund research haven’t made a major breakthrough and Oxfam’s delivery percentage is pitiful. If people feel it’s worth it then it’s their choice, if you don’t then there is no need for you to do so.

    £235,395 was raised in Word Autism Awareness Week 2015. This is several times the total annual income for my local AS support group. What has the NAS spent the money on?

    It won’t have been spent specifically on anything, it will go into general funding, some of it eaten away by admin costs etc. the best way to look at it is a small contribution to everything that the NAS does, rather than try and allocate it to a specific project.

    It has been argued many times over the years that the NAS is only interested in chasing public money by prioritising services towards a small number of people with traditional Kanner autism who require residential care services or children who fit the criteria for NAS run schools.

    NAS was originally an organisation set up for and by the parents of children with ASD to help allow them to help their children, that’s where it’s model, goals and ethos has evolved from. It is trying to target and help those at the most severe end of the spectrum (or “Kanner autism” as you call it), its raison d'être isn’t helping those who can already cope, it’s helping those who can’t.

    There is virtually no public money available for people with high-functioning ASD who do not require residential care services or fit the criteria for NAS run schools. This is why the NAS only offers the minutest crumbs of support to these people along with sweet but hollow words.

    That’s the way of the world, public money/funding is there for those who can’t manage without it, it’s a safety net for those who would otherwise fall. The NAS offers services to those in most need, to those who it’s specifically funded to offer services to and the rest it will offer what it can.

     You seem to want “freebies” either funded by the donations of other, or funded by taxpayers, whereas most people (myself included) would say that if there is a limited amount of funding available (and it is limited, no matter how much people might try and claim otherwise) then you target that at where you can do the most good and at those who without assistance wouldn’t be able to look after themselves. The idea that we should be spending money on some form of ASD dating club rather than on helping those unable to leave their own homes is one many people would find objectionable. 

Reply
  • How limited is limited? According to the 2015 - 2016 NAS Annual Report:

    Total income £98.7m. 

    Income from donations £6.3m.

    84% of all income from statutory bodies (the government).

    It is probably safe to say that the total income for the NAS is greater than the total income for all other ASD organisations in Britain put together.

    It's probably safe to say that most, if not all of the government allocation has significant strings attached, these have also got much more prescriptive post Kids Company. That funding will be provided on the basis that it is used for specific services for those at the more severe end of the spectrum.

    It could be argued that the NAS is less of a charity, in the traditional sense of the word, and is more of a government service provider. IMO if charities receive more than a certain percentage of income (about 25%) from the government then they should be forced to deregister as charities and become businesses instead. 

    Why though, what’s the point? If they don’t declare a profit and try to issue a dividend then they won’t function differently, apart from having considerably less oversight.

    The income from donations is a drop in the bucket of the total NAS income. This raises questions whether it is actually worthwhile for people to do fundraising for the NAS or whether the money would achieve much more for people with ASD who are currently poorly served by the NAS if it was instead donated to another smaller ASD organisation.

    It depends how you look at it, in some ways it is, in others it isn’t. Fundraising is also about raising awareness, those additional funds also allow the NAS to do things outside of its government mandate, without those it can’t work in other areas, similarly its operations wouldn’t be significantly impacted by the loss of the funding from donations. Similarly cancer charities despite claiming to fund research haven’t made a major breakthrough and Oxfam’s delivery percentage is pitiful. If people feel it’s worth it then it’s their choice, if you don’t then there is no need for you to do so.

    £235,395 was raised in Word Autism Awareness Week 2015. This is several times the total annual income for my local AS support group. What has the NAS spent the money on?

    It won’t have been spent specifically on anything, it will go into general funding, some of it eaten away by admin costs etc. the best way to look at it is a small contribution to everything that the NAS does, rather than try and allocate it to a specific project.

    It has been argued many times over the years that the NAS is only interested in chasing public money by prioritising services towards a small number of people with traditional Kanner autism who require residential care services or children who fit the criteria for NAS run schools.

    NAS was originally an organisation set up for and by the parents of children with ASD to help allow them to help their children, that’s where it’s model, goals and ethos has evolved from. It is trying to target and help those at the most severe end of the spectrum (or “Kanner autism” as you call it), its raison d'être isn’t helping those who can already cope, it’s helping those who can’t.

    There is virtually no public money available for people with high-functioning ASD who do not require residential care services or fit the criteria for NAS run schools. This is why the NAS only offers the minutest crumbs of support to these people along with sweet but hollow words.

    That’s the way of the world, public money/funding is there for those who can’t manage without it, it’s a safety net for those who would otherwise fall. The NAS offers services to those in most need, to those who it’s specifically funded to offer services to and the rest it will offer what it can.

     You seem to want “freebies” either funded by the donations of other, or funded by taxpayers, whereas most people (myself included) would say that if there is a limited amount of funding available (and it is limited, no matter how much people might try and claim otherwise) then you target that at where you can do the most good and at those who without assistance wouldn’t be able to look after themselves. The idea that we should be spending money on some form of ASD dating club rather than on helping those unable to leave their own homes is one many people would find objectionable. 

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