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Four questions from the Careless campaign

longman

I've seen the four questions that NAS Campaigns have highlighted from the Government consultation on social care (deadline 15th August).

It is not that I disagree with the four questiions, but to me NAS wants us to convince the Government about needs that NAS doesn't appear to raise on its own website. Surely the place to start pressing for these changes is for NAS to provide the information local authority services can consult.

Question 1 is about the need for specialist assessment. But NAS isn't clear as to what the specialist should be looking for. When people look up the NAS website about autism, they get the triad of impairments. That's what health and community service professionals consult. NAS seems to be saying that is not enough.

Could NAS moderators please raise with campaigns what they want the specialist to determine. At present NAS's only illustration is about asking the right question - if "how are you?" elicits "fine" as a response, that's not asking the right question.

We are supposed to make suggestions here as to why people on the autistic spectrum should get specialist assessments. But I think it is up to NAS to explain this better.

Question 2 is on risk of abuse, which may not continue as a criteria for social services provision. I don't think the NAS website adequately explains vulnerability to abuse, which is not adequately covered by a triad of impairments based explanation, and the NAS campaigns illustration is someone potentially facing bankruptcy - I'm not sure the Government would understand the connection.

Again we are supposed to make suggestions.

Question 3 is on assistance with activities. Needing prompting to do things, which is the NAS Campaigns illustration, is very pertinent, but it isn't explained as an issue on the NAS website, and I can see Government having difficulty comprehending why needing prompting is an issue. NAS needs to explain such difficulties properly on their website.

Again it is being left to us to explain this. Could NAS be more helpful in suggestion what they want said here?

Question 4 is on forming relationships and making friends. This again may no longer qualify for support. But the NAS website explanation of living with autism is about social communication problems, nothing to explain relationships or friendships. Surely if this is important the NAS website needs to cover it.

I can, to some extent, see the Government's difficulty in supporting services they might perceive as being for trivial reasons that could be got round another way.

To convince the Government this is important we need to explain better WHY people with autism do need this kind of support. For that to be achieved NAS needs to explain this properly on their website, and not just rely on us to tick the right boxes for them.

Parents

  • I've been trying to find out more about the context of the NAS Careless Campaign's Four Questions.

    The Care Act does (amazingly for this Government) appear to be doing two good things - providing people with more say in how they are cared for, and providing advocacy services for those unable to make such decisions themselves. It also require staff to have proper training. The object is prevention, by correctly identifying needs.

    A lot of the consultation is about the funding of services, wherein we are getting nearer the truth - where funding is scarce what provisions are scrapped first.....?

    So in that context the "Four Questions" seem a bit odd. The Consultation document does seem to be in favour of people getting specialist assessment by people trained in what their needs are - so in principle people on the autistic spectrum should have their needs assessed by people with autism expertise.

    So why is the NAS Campaigns Question 1 implying people with autism wont get that expert specialist assessment?

    My point above is that many of the issues that might not be addressed in a specialist assessment are not flagged up in current training on autism - not even flagged up on the NAS website.

    It might be that parents and carers can identify more areas of specialist assessment training needs, but if NAS hasn't provided for this in training, it is surely leaving a lot to chance asking "us" to come up with those training issues.

    Similarly in Questions 2, 3 and 4. Vulnerability to abuse, needing prompting to do things and difficulty making friends are things that should be clearly identified in the training materials being supplied for care workers.

    Asking us to respond to the Government is likely to lead to a puzzled reaction, well if these things are important, why aren't they emphasised on the NAS website, and included in training materials?

    The vulnerability issue seems to lie with the degree to which people on the spectrum are able to represent themselves. A lot of website information implies that where there is no associated learning disability and individuals can communicate that would seem to imply they don't need advocacy on their behalf. Much of the advocacy debate is about learning disability. If people on the spectrum without a learning disability need advocacy, then training materials and website information should make this clear. Otherwise the Government will just take the view respondents are making a fuss about nothing.

    Needing prompting implies an identifiable disability. This needs to appear on the NAS website and in training materials. It is no use "us" making the case for NAS, as without the evidence coming directly from NAS the Government could conclude this prompting could be achieved by other means.

    Likewise Question 4. Where is having difficulty and making friends explained in what is primarily triad-based training materials? Communication difficulties could make it harder to make friends, but so could a stammer. NAS literature needs to explain that people on the spectrum have real difficulties making friends and forming relationships. Triad-based training materials don't say that.

    I'm sure people find my attempts to explain this baffling, but I do feel it is important to set out these concerns. If we want the Care Act to take account of these issues, they neded to be in training materials and on the NAS website. I don't think they are clearly explained. Inference from related factors isn't enough.

Reply

  • I've been trying to find out more about the context of the NAS Careless Campaign's Four Questions.

    The Care Act does (amazingly for this Government) appear to be doing two good things - providing people with more say in how they are cared for, and providing advocacy services for those unable to make such decisions themselves. It also require staff to have proper training. The object is prevention, by correctly identifying needs.

    A lot of the consultation is about the funding of services, wherein we are getting nearer the truth - where funding is scarce what provisions are scrapped first.....?

    So in that context the "Four Questions" seem a bit odd. The Consultation document does seem to be in favour of people getting specialist assessment by people trained in what their needs are - so in principle people on the autistic spectrum should have their needs assessed by people with autism expertise.

    So why is the NAS Campaigns Question 1 implying people with autism wont get that expert specialist assessment?

    My point above is that many of the issues that might not be addressed in a specialist assessment are not flagged up in current training on autism - not even flagged up on the NAS website.

    It might be that parents and carers can identify more areas of specialist assessment training needs, but if NAS hasn't provided for this in training, it is surely leaving a lot to chance asking "us" to come up with those training issues.

    Similarly in Questions 2, 3 and 4. Vulnerability to abuse, needing prompting to do things and difficulty making friends are things that should be clearly identified in the training materials being supplied for care workers.

    Asking us to respond to the Government is likely to lead to a puzzled reaction, well if these things are important, why aren't they emphasised on the NAS website, and included in training materials?

    The vulnerability issue seems to lie with the degree to which people on the spectrum are able to represent themselves. A lot of website information implies that where there is no associated learning disability and individuals can communicate that would seem to imply they don't need advocacy on their behalf. Much of the advocacy debate is about learning disability. If people on the spectrum without a learning disability need advocacy, then training materials and website information should make this clear. Otherwise the Government will just take the view respondents are making a fuss about nothing.

    Needing prompting implies an identifiable disability. This needs to appear on the NAS website and in training materials. It is no use "us" making the case for NAS, as without the evidence coming directly from NAS the Government could conclude this prompting could be achieved by other means.

    Likewise Question 4. Where is having difficulty and making friends explained in what is primarily triad-based training materials? Communication difficulties could make it harder to make friends, but so could a stammer. NAS literature needs to explain that people on the spectrum have real difficulties making friends and forming relationships. Triad-based training materials don't say that.

    I'm sure people find my attempts to explain this baffling, but I do feel it is important to set out these concerns. If we want the Care Act to take account of these issues, they neded to be in training materials and on the NAS website. I don't think they are clearly explained. Inference from related factors isn't enough.

Children
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