autism bill passing through parliament.

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i am not sure whether this has been mentioned on the boards before- apologies for being repetative if it has. thought it might be interesting to know that there is a proposal to improve autism care and treatment.

so- there is an autism bill wending it's way through the house..... bill is from a tory mp!

from- http://news.bbc.co.uk/1/hi/uk_politics/7915261.stm

Autism bill clears first hurdle

Mrs Gillan says she has widespread support for her bill . A Tory MP's bid to improve support for people with autism has cleared its first Commons hurdle, despite government opposition. Cheryl Gillan's bill would put a legal duty on councils and NHS services to look after people with autism.

Labour claims their autism strategy would achieve the same effect without the "blunt instrument" of legislation. But Tory MPs cheered as they won a vote to stop the bill being "talked out" by 131 votes to 25 - a majority of 106.

They had entered the Commons chamber to support the closure motion in unusually large numbers for a Friday and the bill was given an unopposed second reading - allowing it to move into its detailed committee stage.

'Landmark victory'

Chesham and Amersham MP Mrs Gillan came top of the private members' ballot in December, which allows opposition parties and backbenchers to launch their own bills. But although it had cross-party support, a letter from Health Minister Phil Hope to MPs earlier this month raised concerns the government would try to block the bill at its second reading on Friday.


and from the house's site http://news.parliament.uk/2009/02/secon ... tism-bill/

Second reading of Autism Bill
27 February 2009
House of Commons debates Private Members' Bills, starting with the second reading of the Autism Bill.

Commons Hansard: Second reading of the Autism Bill
Bills and Legislation: More on the Autism Bill, including Library research paper
Parliament News: Private Members' Bills Ballot
The Autism Bill aims to provide better information about the numbers of people with autism and their needs and to improve the local planning and delivery of services.

The Bill is sponsored by Cheryl Gillan, the first MP to be drawn from this session's Private Members' Bill Ballot.


all power to Ms Gillian!!

I watched the entire thing on TV on the day the authorities refused me autism services.

excellent- i hope you saw the irony!

seriously, that is terrible. i am already hatching a plan to go and see this woman and ask her to help me with the seminal lack of help i get- they wont help, but if i say i feel depressed, i get threatened with sectioning.
HOW IS THAT HELPFUL???? i hate being around other people, hate noise, light, smells, sleeping on strange beds, sharnig a room, etc etc-utterly pointlesss. high time something changed.

if/when i do make it, i will gladly take a letter from you, or you could email her yourself. or you could come along!!

my council once entirely refused to pay my housing benifit and several appeals failed, but a wee letter from my MP did the trick. it does have some weight to it.
i am also planning to write to the health sec and the work and pensions min (help would perhaps get me off benifits) etc. though im really quite depressed at present, so none of this is imminent (unable to do washing up- letter writing seems way off).
good luck with your problems- if you phone the NAS they can tell you about advocacy groups in your area- though i cant really speak on the phone at the mo, so its no good either.

good luck,a nd if you would like to come along to see this woman, or give me a letter to give to her, PM me.

I'm considering emailing her my story because she seems to collect them. However, it's against parliamentary rules for an MP to deal with enquiries from another MP's constituency, so I'm not sure what to do. It's best to write to my own first, I think.



That's interesting. I think I'll write off to my mine as soon as possible; but just so many letters to write already!



I find the washing up more challenging than letter writing . Good luck with yours too. I have to wait a while to get someone to phone the NAS for me. I have the same problem with phones.



If you manage to get a meeting with her, and it's not against the rules about dealing with non-constituency members etc., I will go with you. Let me know by PM if you obtain a meeting. Maybe we could try to find others to go too.

It's about time too! This has been mentioned anywher. I have been passed the buck so many times in my life between various services. I have also paid for these services (council tax) as well but did not receive any. This made me furious about the situation and the person generated circumstances of autistic children and adults.

I heard about the autism bill earlier today, I guess it's a good thing (I think) from what I see of it.

hullo outlier- i will- once im a little more high fnctioning- find out all about it. im sure MPs can speak to people from outside their constit, if it's their area of interest. ministers definatly can- ben bradshaw is def going to hear from me.
i also have to call channel 4, as in watching the parliamentary awards a few weeks ago, there was a lab Mp who was raising autism,a nd made a special speech- was up for mp's mp award or sim- but i lost the bit of paper with his name on, and cant find him after much googling.

luckily my mp is dobson, who was the first health min for this gov in 97, and he appears to retain an interest.

i am MOST amused to hear im not the only one unable to tackle washing up- hillarious!!
though i can cook very good, cordon blue didshes, i tend to eat biscuits and crisps at the moment, as even cooking ready meals is too much. on the strength of this, i should qualify for a care component on dis livinging allowance, but since i dont cope well with people when im being so low funtioning, id never ever do it... 'high functioning autism' seems a pretty crappy label sometimes...
i hvae had vague images of speaking before a select comitte baout this- ironically again, i hvae no fear of public speaking- but small talk? gives me heeby jeebies!!

Aspiewordsmith- i agree- ive paid taxes too- i get no help at all; its really wrong.... worse still, i live in an area with a lot of immagrants who all refuse to learn to speak english ('dont want o loose their culture'), dont work, but have interpreters (on the nhs!!) to speak for them at the dr!! ! just BIZARRE!! !! ironically- people who have a gentic condition which is well known to make communication dificult- get no little or no help.

no one ever understands how dificult it is to constantly repeat information to someone how is supposeed to be helping you- thats why its just easier to hide away and do nothing. 'just' do something, 'just' call taht person, 'just' post this letter is generally beyond my capacity. its hard for even me to explain, but it makes life impossible.

anyway, contating these people is a whle off at the moment, but when i do get round to it, ill post here and PM you.
(so glad its not just me rubbish at washing up!!)

I wish there was a law similar to that in my country. You just don't many autism services in the U.S. and that depresses me.

misslottie,
am dont understand this autism bill well,so haven't said anything about it on the threads about it here and another forum,but how come they say

is there not already a legal duty to look after autistics who are assessed as having care needs?

it is strange to hear it has come from someone in the tories as well,the institution am used to live in was closed, and sold off to builders to make money by the tories,which ended with all auties being rehoused into unsuitable residentials,it's like the whole group [tories] dont know what each other are following.

If this bill is going to help more autistics as a whole,then...more of it!

Out of this,am would like to see social services make an ASD department so that autists who are severely affected enough to qualify for the usual LD services that get shoved in- are understood and treated better,and higher functioning autists who havent been able to qualify for LD services would be able to get help and support this way,providing there's not the usual fuss about 'funding'.

i found this elsewhere- 'including a new national strategy to be launched in April and guidelines on caring for people with autism.'
april?? EXCELLENT!!

here is the link to hansard- ie- full record of her speech
http://news.parliament.uk/2009/02/secon ... tism-bill/ or
http://www.publications.parliament.uk/cgi-bin/search.pl


(extract)- Autism is a relatively recent diagnosis that was recognised only after world war two. Indeed, Asperger’s syndrome became part of international diagnostics manuals only in 1994. That may go some way towards explaining the low public understanding of autism, because although there is a high public recognition of autism and the fact that it is a disability, there is a host of myths and misconceptions about it. One of the most common is that autism affects only children, but one recent estimate put the number of adults with autism at well over 300,000. Often the interest in autism concerns its negative impact and burdens, but there are positive aspects, such as the outstanding talents, which have been considered far less often than the negative impacts. Professor Uta Frith tells me that about 10 per cent. of individuals exhibit special talents, mainly in art, music and memory. Many people also continue to believe, wrongly, that there is a cure for autism.


hi- DeVoTeE . well, as you can see, people in the UK struggle terribly with getitng help,a nd though i know its better than in the US, since we have a half decent welfare state (though the current and previous gov have tried to dismantle it,a nd still try to do so) and the NHS is good, but not great.

its still really hard to get diagnosed, and after that, to get help. i have only read of a couple of peiople on the boards here- kingdom of rats and someone else, who really get assisted living help- though of course others may do, but not mention it, or ive not read it.

also autism comes under mental health in the NHS, this is the most underfunded service, and each time cuts are made to spending, big chunks get taken out of this area- though its very under reported. cancer care gets lots of money now, and neo natal care always has. there is areally long waiting list to see a therapist of any kind. perhaps things will change now- obama seems v. aware of the need for healthcare, especially as he now has hillary on board, who has always been mrs health service??

hi kingdom of rats - i was really surprised too it was coming from a tory. though i imagine she knows someone personally with autism (thought she does not mention this). i dont know what duty of care the NHS has to autistics at present- i imagine she is trying to get it altered to apply specifically to autism, rather than a more general 'vulnerable people' or something. also, were it to be specified, it would qualify for funding and get budgets, i imagine,and have targets etc? rather than people simply falling through the cracks,a nd not appearing on anything but the sickness benifits figures. obvoiusly one of the greatest problems w autism is lack of communication, and if the ststem is hard anyway, its a million times harder to seek help if you cant communicate.

more generally, even with being diagnosed, i dont get the sense that there is currently any joined up thinking- even within the NHS, let alone betwween the nhs and councils, about care, in the same way that- man looses legs in car crash does (though i know that is also a nightmare to get help with). at present, my housing officer is just a general 'vulnerable persons' officer. though- freakishly- her brother has a.s.. she still gets really angry with me when i dont communicate though, so its still not ideal. i know im frustrating. i wish i wasnt.
anyway, it would be good to get a more concrete - ie written down- awareness of the problems autists have; esp since one finds it hard to describe, and to continually be asking for help and repeating things, when not really able to speak on the phone etc.

it would also be really useful to have a gerater focus on adults- since most stuff now is aimed at children, who- dud- become adults.
better dx aservices are the most needy part, however...
i will write to her when i get myself together....

anyway, id like to be optimistic, but i really cant be. i know things have improved immesurably with cancer, but 1 in 3 people get it- it was bound to happen. autism is still seen as akin to mental illness, and is therefore something one can 'recover from' with a 'more posative attitude' or in fact 'you dont hvae it at all' ( as i was told last week.).

That was like me when I lived semi-independently; I couldn't feed myself adequately. I'd buy tubs of dried noodles (of the nicer brands) that you pour boiled water over and add flavoured sachets to, but sometimes couldn't even manage that. Is it the process of dealing with people while applying for DLA that you are unable to cope with--I know you can do some applications for care online-- or the actual interaction with the carers they might provide? If it's the latter, maybe you could specify that someone drop meals to your door and that they mustn't come in.



Ok. I hope when you do contact Gillan she is helpful.

Thanks for posting the link to the Commons Hansard. That's very handy. Everyone can now read the entire second reading of the autism bill (and it's much quicker for me than watching them speak ).




Yes; however, they don't enforce it.

There's also a legal duty to provide assessment for AS, which I'll outline below, but they don't enforce that either:

After the Dept. of Health (DH) published Valuing People, in 2001--the guidance on learning disability--there was an outcry because it excluded AS (as it's associated with IQ>70). As a result, the DH issued a circular under section 7 of the Local Authority Services Act, 1970, saying the health and social services must make assessments available to those with AS.

Even though this has been used in several court cases, most people (e.g., parents and professionals) are unaware of section 7 of this Act and that they can use it if denied access to services. It is due to lack of awareness, leadership (by local authorities), and enforcement, that section 7 hasn't worked for those with AS. It's also difficult to interpret. Therefore, the current autism bill is required; it will raise system-wide awareness, as well as require that the government guarantee it will be enforced. It will also make it easier for people to take the authorities to court. Ridiculous, I know, since there's already legislation in place.

Local authorities currently ignore the statutory guidance produced by the DH etc. The government didn't want the autism bill to proceed and were just going to issue more guidance with their coming Autism Strategy, saying that it would be enforced this time, but MPs voted for the autism bill to ensure that this guidance is more likely to be enforced.




Yes. Although autism is a cross party issue, the opposition are relishing that this bill is theirs, not the government's. It's about scoring points against the government to a certain extent. It's only been in the last decade that politicians even recognised the existence of autism. In 2000 it was found that a significant number of them didn't know it existed or what it really was.



There is something I noted down while watching the second reading of the bill. Labour's Joan Humble said, while talking about Direct Payments, and about placement in adult services:

If an adult with autism is placed in their own tenancy, supported by care workers, then they have access to housing benefits and a series of welfare benefits that reduce the cost to the local authority. If an adult is placed in a specialist residential provision, they do not have similar access to the range of benefits. I hope that the needs of the individual will come first, not money. Will the Minister consider that point? Sadly, all too often adults with autism are expected to fit into existing provision, but they cannot do that. They may have the external characteristics of many people with learning disabilities or mental health problems, but autism is different, and so the response has to be different. That is why we need to ensure that there is more specific provision for people with autism ... those at the more severe end of the spectrum need their particular needs to be properly addressed.

She hopes the guidance on autism to be published in April (and, I think, finalised in December) will be put into practice. This will also prevent the 52% with HFA/AS who don't meet LD or mental health service criteria from being left out.


More on adults

In April they will launch the consultation on a new national strategy for adults with autism. An external reference group (made up of experts, such as the NAS, autistics, and academics) have developed 4 pillars of reform for this strategy:

1. Better specialist and mainstream health services
2. Tackling social exclusion and employment
3. Improved choice and control for autistic adults (e.g. individual budgets)
4. Improving the skills and knowledge of staff who work with autistic adults

These are already supported by statutory guidance; it just currently doesn't get enforced.