Petition re Adult Services

[Cat]

I have been asked to forward this to as many groups as possible. I personally think that anyone who has a child or an adult with AS should think about signing this petition.

 

Cat

 

Government intention and the law?s demand is that for people with social care needs, ?the needs of adults are reflected in the full range of statutory services.? However, the minister admits to me that ?the current position whereby some people with an autistic spectrum disorder can ?fall though? local services....is unacceptable?, but it is manifestly obvious that this is not happening for people with Asperger?s. Services do not exist, people are fobbed off and excluded because they are square pegs.

 

The population of people with Asperger?s in the UK is about the size of the population of Cardiff ? something should be done, but still professionals refuse responsibility, diagnoses are made late and inaccurately or not at all, and inappropriate services are offered as the only answer.

 

It seems to me that there is an impasse and so I am floating this petition to gather support for the creation of a dedicated government budget for these people in the belief that when money is available to offer the support that is needed, innovation in service design will follow and people will begin to wonder what can actually be done.

 

If you feel that this is a worthwhile cause to bring to the Prime Minister?s attention, please sign this now at http://petitions.pm.gov.uk/aspergerbudget/ and pass it on to others who may be interested.

 

Thanks

 

Bill Goodyear

 

]

Edited April 9, 2008 by Karen A
Link removed in line with Forum rules.Karen.

[lorryw]

The problems is that many local authorities are only providing social care to those with "critical" need. Only those with the most severe disabilities will be eligible for any care at all.

[Cat]

I agree with you but this is something that we have to keep bringing this onto the political agenda. I have managed to get myself onto a new ASD Consortium where I am making sure that they are aware that everyone with a diagnosis of ASD will need lifelong care and attention. It's the same triad for all and it's time that this was taken on board.

 

Cat

[warrenpenalver]

unfortunately not enough money to solve the problem at the moment and even with this petition its just not high enough profile compared to the mainstream problems in NHS, education and crime, and imigration. ASD's are well down the pecking order. not fair unfortunately but we can only blame an inefficient and inept government the last 20 years selling out everything privately. If all the profit made by companies contracted to NHS was returned to the NHS we wouldnt have such a bad service!!

[warrenpenalver]

mmmmm just re-read that. maybe im becoming synical in my old age.

[baddad]

Hi all/cat -

 

Cat, I totally agree that:

 

[appropriate support]... is something that we have to keep bringing this onto the political agenda

 

but at the moment I keep seeing lots of online petitions that don't seem very well thought out, and I wonder if that really helps or whether it actually detracts from the ones that do have more achievable objectives?

I don't know whether other disabilities have money ring-fenced in this way, but it would seem (IMO) more practical to lobby on the basis of support for the disabled generally rather than trying to highlight Asperger's Syndrome as a specifically disenfranchised 'branch' of the population. It's not ring-fenced services that people with AS need, it's recognition that their needs are often not being met by the existing services. Unfortunately, that's also true for just about every other sector of the disabled population, from those with lifetime conditions like Downs Syndrome or Spinabifida through those who develop mental health issues or just become disabled by advancing age. I think every case of 'need' has to be judged individually, and support offered on that basis. The ways that assessments and 'judgements' are made are really key issues, but that's about education rather than ring-fenced support funding.

 

I hope you don't think I'm being 'picky' but I was also very uncomfortable about the generalisation that:

 

everyone with a diagnosis of ASD will need lifelong care and attention.

 

I think it's far more likely that people with AS/ASD are going to need some kind of support at some points in their lives (but then I think that's true for the one in eight of the population who have mental health issues too, etc), and certainly there will be large numbers who do need lifelong care and attention, but I think it's quite dangerous to make claims like the above, because they are so easy to challenge by pointing to those with (particularly AS) the skills that do enable them to live independently and work and generally negotiate their lives. Once that happens, the whole argument is undermined to the detriment of those who do fall into the lifetime need category. It may(?) be "The Same Triad For All", but certainly the implications (and the 'degree of disablement' for want of a better way of putting it) from individual to individual vary enormously. we object vehemently if professionals make 'one size fits all' judgements, but how can we possibly argue against that if we are making the same kind of claims?

 

BD

[Bard]

I think it's far more likely that people with AS/ASD are going to need some kind of support at some points in their lives (but then I think that's true for the one in eight of the population who have mental health issues too, etc), and certainly there will be large numbers who do need lifelong care and attention, but I think it's quite dangerous to make claims like the above, because they are so easy to challenge by pointing to those with (particularly AS) the skills that do enable them to live independently and work and generally negotiate their lives. Once that happens, the whole argument is undermined to the detriment of those who do fall into the lifetime need category. It may(?) be "The Same Triad For All", but certainly the implications (and the 'degree of disablement' for want of a better way of putting it) from individual to individual vary enormously. we object vehemently if professionals make 'one size fits all' judgements, but how can we possibly argue against that if we are making the same kind of claims?

 

BD

 

I totally agree with this, I'm concerned that such a blanket statement will undermine support for people like my son, who will not need constant lifetime support, but may need some adaptation and understanding of his condition by College, University and work. The support needs to be as variable and flexible as the people on the spectrum that need it.

We don't get DLA, we don't need it. Others out there do, and at different levels. I would feel very uncomfortable taking money that another might be turned down for.

[Mumble]

We don't get DLA, we don't need it. Others out there do, and at different levels. I would feel very uncomfortable taking money that another might be turned down for.

What do you do, then, when DLA is seen as the key to other services?

[Bard]

What do you do, then, when DLA is seen as the key to other services?

 

I wasn't meaning to sound dismissive of the huge need for DLA for those to whom it is necessary to provide services for their child, or themselves.

What services does B need? Flexibility on the part of those educating him, those involved in the clubs that he attends, the people that he interacts with. he has a good SENCO, and has seen the Ed Psych who in turn fed back to the school. Who listened.

I'm his interpreter and facilitator, he's keen to learn and understand the world and the social dynamics. We work together on building his independence, and review situations and misunderstandings as they arise.

So what extra services does he need that I'm denying him? Not an attack, a genuine question.

 

He gets all the support he needs in mainstream school, and when talking with Bid, Lya and Kathryn, it really annoyed and exasperated me that other schools aren't doing the same as B's. It's not complicated or expensive, it's just seeing him as an individual and what his individual needs are. If his school of 1,200 can do it, why can't the rest?

[baddad]

What do you do, then, when DLA is seen as the key to other services?

 

 

Hmm..Dunno about this one... is it?

I'd have thought the dx was the 'key', and that DLA was more an 'indicator' of monetary support needs than actual support needs?

I don't have a problem with non-means tested benefits per se, but I do think that where the financial support isn't a necessity there should be more encouragement for people who don't need it to show a degree of social responsibility about it. That doesn't just apply to disability benefits, I also feel the same way about (i.e.) child benefit and things like that. Being entitled to something doesn't mean that you necessarily need it, and not taking up a particular resource because you don't need it shouldn't debarr you from accessing the resources you do need. Now there's a petition topic for you!

That said, if too many people 'opted out' because of being good, socially responsible people it would be 'spun' as a reason for cutbacks... so what they should do is take the award, but then donate it anonymously and on a regular basis to a charity that offers support for people with the same condition who are living on the breadline - 'cos there will be plenty of 'em

 

BD

[Karen A]

Hi All.

I am aware here that I may be asking a slightly contoversial question but do all individuals with AS want care and attention ? and is it right to generalise about what people need if they are perfectly capable of voicing an opinion themselves ?

I am talking specificaly about AS rather than ASD because that is the group the petition refers to.

Some may consider that I am over optimistic or in denial.

However I want Ben to be enabled to be an active participant in whatever he wishes to do in his life.I hope that with acceptance of his unique skills and abilities and an appreciation of the areas that are more difficult Ben will have the same oppurtunities as his brother...to go to university if he wishes, live independently if he wishes and to develop relationships.Ben certainly does not see himself as a passive recipient of care and attention.

Surely what many individuals with AS want is to be enabled to have equal oppurtunities in education,leasure,housing and work not to be seen as passive recipients of care.Karen.

[alanm]

Surely what many individuals with AS want is to be enabled to have equal oppurtunities in education,leisure,housing and work not to be seen as passive recipients of care.

Very well said Karen. I am far from a "passive recipients of care" as an able adult with such mild AS, I have been able to live independently since leaving home as a student at 18, and am now 36. The equal opportunity in work is particularly significant for me, some of you will have read my threads on the Beyond Adolescence pages.

 

Another interesting petition on number 10 which caught my eye a while ago is this one for more public sector jobs for people with Asperger syndrome. So many public sector organisations appear to champion "Equal Opportunities Policies", "Positive About Disabled symbol" etc yet you still see "good communication skills" in almost EVERY vacancy ever advertised by such organisations. They need a framework for helping un- and under-employed AS people to fast-track into vacancies where the reasonable adjustment can be made to job specifications to be AS compatible.

Edited April 10, 2008 by alanm

[Mumble]

such mild AS

I don't understand this. The diagnostic criteria for AS state that: "The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning". How does clinically significant fit with mild? The use of mild in ASD is a real bugbear of mine.

[Mumble]

Hmm..Dunno about this one... is it?

From what I've so far found out, yes, and it's really upsetting me. If I don't claim it (as currently) I can't even begin to access some forms of support. Not having family support means that unless I do what I morally disagree with, I have no access to support. I desperately need support with accommodation at the moment - I've been placed in the most inappropriate, un-autistic friendly accommodation you could think of for next year, that could, quite literally, be the death of me. But I can do nothing about accessing wider services unless I choose to take what I do not need.

[Bard]

From what I've so far found out, yes, and it's really upsetting me. If I don't claim it (as currently) I can't even begin to access some forms of support.

 

But I can do nothing about accessing wider services unless I choose to take what I do not need.

 

Think of it like a branching data base. If you need to be at a specific point, and there is only one route into the system, then take it. Take what you do not need, in order to obtain what you do need. The fault is in the system, not in you.

[Tally]

Mumble, are you saying that you feel it would be wrong for you to claim DLA because you don't need the money, but you are finding it impossible to access the support you do need because you need to receive DLA to qualify? If that is the case, then perhaps you could apply for DLA and put the money aside for something that does feel right to you, perhaps donate it to a charity that supports people with autism.

[Canopus]

We don't get DLA, we don't need it. Others out there do, and at different levels. I would feel very uncomfortable taking money that another might be turned down for.

 

You could always contribute the money to an AS "fighting fund" because this is something Britain lacks at the moment. A large pot of cash in the hands of the AS community would go a long long way because our government isn't going to give a crumb to people with AS at the rate things are going. This has nothing to do with lack of money but lack of interest.

 

Offensive content removed by moderator

Edited April 10, 2008 by mossgrove

[Mumble]

Mumble, are you saying that you feel it would be wrong for you to claim DLA because you don't need the money, but you are finding it impossible to access he support you do need because you need to receive DLA to qualify?

Exactly. Maybe I'm misunderstanding something, because if this is the case, it seems ludicrous.

[baddad]

Hi Mumble/All -

 

Mumble, I think tally/bard have given you the answers re DLA, but I don't understand why you feel you don't need it? You've said that living in halls is difficult for you, so why not use your DLA to pay for more appropriate living accommodation (you could maybe become a 'lodger' in a small family home) or if it wouldn't stretch to that maybe to pay occassional one night/two night hotel or YHA rooms as 'respite' when things in halls got really difficult. Both of those seem perfectly legitimate ways of purchasing 'services' which provide for your well-being?

 

As for the 'Mild'/'significant clinical impairment' thing - i don't see any inherent incompatability for the terms... An artificial limb is a significant clinical impairment, but it's not the same as lower body paralysis... whatever words you use (mild/HF/profound/severe) the differences in support needs between two autistic people may be just as wide, or even more so...

 

BD

[Kathryn]

This is a really interesting thread and it's an issue I think about a lot, as I often wonder what my 19 year old daughter will get in the future in terms of support.

 

I don't know the answer to that, as I find it hard to analyse what she needs, as I together with her dad provide most of it on a day to day basis in a subtle way and we don't really think about it.

 

I find it hard to identify with campaigns for adult support such as the one the NAS is running at the moment, as L doesn't really need "services" from another organisation. Neither does she want to access them, as she shies away from being categorised as "a person with AS". Like others have said so eloquently on this thread she needs adjustments, and understanding - this includes the acknowledgement that sometimes she will be functioning at a level similar to an NT person with very little discernible difference, and at other times she may behave in a more obviously autistic way and need lots of overt support. That's hard for people to grasp if they have a stereotypical view of disability (i.e. either you are or you aren't disabled).

 

Re DLA: I fought really hard for L to get it and we're really lucky although she did have a physical disability as well which made it a bit easier. Although her problems are not as severe as when I applied I still think she is entitled to it, at least until the next renewal comes up. She has nothing to show for 10 years of state education except a bunch of mental health problems. So the state can jolly well pay to smooth her path through adult life for the moment at least, until she is able to support herself, if that moment ever comes. She's going to be a student for a little longer than most, and she may not be able to hold down a full time job. So it's the hard cash we need - not AS specific services.

 

K x

Edited April 10, 2008 by Kathryn

[Mumble]

she needs adjustments, and understanding - this includes the acknowledgement that sometimes she will be functioning at a level similar to an NT person with very little discernible difference, and at other times she may behave in a more obviously autistic way and need lots of overt support. That's hard for people to grasp if they have a stereotypical view of disability (i.e. either you are or you aren't disabled).

Totally.

[pearl]

JP's DLA is due for renewal at 21. If he is holding down a full time job & on the way to living independently by then I doubt we will reapply, but it has been a real bonus for us over the years we have had it. Now he gets it in his own right he uses it as his "board" money so he's contributing at home, but he's only on a small wage so he gets to keep everything he earns. When he was younger, I regarded it as enabling me to work part time instead of full time, it didnt cover the wages I lost but helped a little. I honestly couldnt have worked full time as he required so much attention & I really admire those who can do it all, cos I certainly couldnt.

 

As far as specific services go, I would like to see a local social group he could attend, AS specific counselling services, and specific help with the transition from living at home to living independently - help with budgeting, shopping etc. That would do very nicely.

 

Mumble, I agree with bd - you are entitled to DLA & you could use it to ease the accommodation situation. <'>

[Cat]

Sorry to be late coming back to this but here are my thoughts for what they are worth.

 

I will not make any apologies for batting for those who reside on the autistic spectrum as opposed to batting for every child or adult with a disability. My sons have autistic spectrum conditions and so I bat in their direction.

Sadly Aspergers Syndrome is, in my opinion, already a disenfranchised 'branch' of the population. While it would be down right stupid to suggest that other disabilities were sitting pretty it would be correct to say that some, including Downs and 'all' learning disabilities have at least made it onto a ladder which is hopefully going to take them in an upwards direction.

 

When Valuing People was first launched in 2001 (I think) it left out adults with AS - they did a hasty re-write because so many parents complained and were anxious that once again AS was being singled out and left out as the poor relation of the spectrum, but in reality people with AS were left out of this Government Paper because most people with AS do not have a learning disability. I accept that many with AS do not have a learning disability as it is defined by ones IQ. But if there are significant issues wrapped around social communication which is affected by an ASD is that not then a 'type' of learning disability? How we receive information, process it and then express ourselves must surely affect our capacity to learn? Some adults, indeed many, will at some point during their adult lives need to access service provision. Who is going to help them communicate their needs by helping them to fill in the necessary paper work? I know that my adult son, who is very high functioning AS is unable to successfully even read these wonderful 44 page long documents along with their 'how to fill this form in' notes. At the moment that provision does not exist which is why so many parents, who are becoming desperate, are trying to force this onto a political agenda.

 

I totally accept and 100% agree that adults with AS will not require the same type of service provision as some other disabled people but when I read 'Valuing People Now' I see much of what I personally feel that our adults could also do with.

 

Here are the key priorities for shaping service provision from 'Valuing People Now'

 

Personalization

 

What people do daytime-night-time - weekends - leisure (how do you spend your spare time is there anything for you to do or access?)

 

Better health

 

Improving housing - and helping independence

 

Advocacy and rights

 

Partnerships with families

 

Including everyone

 

Seeing people as local citizens

 

Making transition from teen to adult painless and seamless

 

Improving the workforce

 

Legal and civil rights

 

Inclusion

 

Independence

 

Choice

 

You see I read this list and I think I would like all of these things to be available for my sons. I know that they will need supplying in a different package deal but at the moment there is no package deal at all.

 

If you read 'Valuing People Now' it talks about life chances and working life. It says that 5 to 17% of adults with a learning disability are in some type of employment. The percentage for adults with AS in some type of employment is 12%. This says a great deal to me ? it may not to other people but it does to me.

 

'Valuing People Now' spares one paragraph to adults that have autism and AS and says thus:-

 

Valuing people rightly only applies to people with autism and Aspergers syndrome if they have a learning disability. This has caused some confusion in some places and whilst the ?Life Chances of Disabled? people will help it needs to be clear how Government policy for people with autism and Aspergers Syndrome will be delivered.

 

Policy can only be made clear if there is one to make clear.

 

 

The guy who has started this petition is saying

 

Appropriate support barely exists until people get so depressed and anxious they qualify for mental health support.

 

In short you have to reach crisis point. This is true - only a few weeks ago Genevieve Edmunds well known in the AS community, who co-wrote a National report on the needs of adults with Aspergers Syndrome, and also a much published authoress committed suicide. The suicide rate amongst adults with autism is high. The problem is that many of our adults do not always know that they need to access services, they do not see themselves as disabled (to me this is a big part of the problem) and because there is no cover for them at all and they are basically set adrift at the age of 19 they often do hit crisis point before something is done or it is too late.

 

The petition states

 

Access to services is prevented by:

'Professionals refusing to take responsibility' Diagnoses that are wrong, confusing, late or not made ? Service being inappropriate for individual needs ? Budgets being too tight to allow for an appropriate service ? Lack of understanding/knowledge amongst professionals at all levels ? Absence of appropriate services.

 

I have to agree with all of this and it starts long before adult hood. Every Disabled Child Matters claimed a huge success by managing to secure funding for respite care and short breaks and the money is being pumped into the new 'Aiming High' initiative. However the money is essentially for severely disabled children and the criteria to access this money is High Rate Care for DLA and I have this in writing from the National Co-coordinator for Every Disabled Child Matters. So yes DLA or lack of it can and does disqualify children and adults from accessing provision. In some LAs having a statement is part of the criteria for accessing provision so that would mean that a bona fide diagnosis stands for very little as a child and more so as an adult.

 

Both of my sons are highly verbal and I often say that they are well able to speak for themselves and in part they are. But they do not always take away from a conversation what is meant by the person speaking to them, which can cause both of them a great deal of frustration when I have to point out what was actually meant by the person speaking to them.

My 20 year old son does not think that he needs any provision at all and has said this. However when he thought about this he said that he probably did not need to access any provision because we continue to do for him what he is unable to do for himself. We are still fighting his battles for him and still making sense of the grown up world for him. Most 20 year olds are well able to not only speak for themselves but act for themselves.

 

I now know a fair few adults with AS (most are not working at all) and many say that they do need services to help them to function without feeling totally stressed out and anxious but the vast majority to not tick the right boxes for support and so struggle on a daily basis.

 

On the whole I agree that petitions are not going to make a difference but something needs to. If life is tough and one long battle to get what we need for our kids, the battle for adult provision is that there is nothing there to fight for. Can this be right?

 

Cat

Edited April 12, 2008 by Cat

[baddad]

Hi cat - very quick 'cos I was just on my way to bed

No, it isn't right, and i agree with many of the points you make...

what I was trying to say, though, with my original post, is that the petition you linked to (and many others I've seen) seem so ill considered that they do more harm than good.

The key to recognition and acknowledgement for people on the autistic spectrum lies not in 'ring-fenced' resources but in better understanding of the condition and its implications. In addition to that, the autistic lobbyists have to recognise that resources are finite, so fighting for 'more' is unrealistic, while fighting for better allocation of existing resources (by promoting better understanding of needs) is the way forward. Anything less than that is 'robbing peter to pay paul' and that's never going to be acceptable (nor should it be) in practice when 'peter's' need is perceived as the greater.

The key points you highlight that you would like to see for your son are absolutely 'spot on' but I don't think the autistic community is any more disenfranchised from those things than a majority of the rest of the disabled population. In that respect, there has to be a united 'front' on general disability rights rather than a divisive one that differentiates between autistic people and the rest of the disenfranchised community...

Blimey - much more than I intended!

 

Orf to bed now

 

 

BD

[pookie170]

The key points you highlight that you would like to see for your son are absolutely 'spot on' but I don't think the autistic community is any more disenfranchised from those things than a majority of the rest of the disabled population. In that respect, there has to be a united 'front' on general disability rights rather than a divisive one that differentiates between autistic people and the rest of the disenfranchised community...

 

BD

 

 

I don't know that I agree wholly with that,BD.. Yes, there must be a united front on general disability rights but I DO think that some parts of the autistic community are certainly more disenfranchised than a majority of the rest of the disabled population. I believe that EVERYONE who has a disability deserves support that makes the transition with them as they move out of their teens and into adulthood. But I'm sure many will agree that if the disability is not immediately apparent then this is often not the case-Iit's so very hard to get the support even when the disability IS apparent, we had to fight for so much for my Dad.

I really do think that those members of society who are on the spectrum, and whose issues do not require the provision of ongoing, 24-hour care, are very much disenfranchised. The same goes for people who have a mental health issue (I am not linking this to ASDs, just another example!) that does not require hospitilisation or round the clock care/support...And yet still there is far more understanding and support available for sufferers of a wide range of mental health problems...

Ooh, it's late, and I can't think through my wooly brain to see if I've even got what you said right or not, BD!!! And my Cal is only 10, so we have'nt really got personal experience....but I do live in hope that some day understanding and support will be the norm....(Im starting to sound like John Lennon now, but I hope you catch my drift....)

 

Im off to bed!!!

Esther x

[Karen A]

I don't know that I agree wholly with that,BD.. Yes, there must be a united front on general disability rights but I DO think that some parts of the autistic community are certainly more disenfranchised than a majority of the rest of the disabled population. I believe that EVERYONE who has a disability deserves support that makes the transition with them as they move out of their teens and into adulthood. But I'm sure many will agree that if the disability is not immediately apparent then this is often not the case-Iit's so very hard to get the support even when the disability IS apparent, we had to fight for so much for my Dad.

I really do think that those members of society who are on the spectrum, and whose issues do not require the provision of ongoing, 24-hour care, are very much disenfranchised. The same goes for people who have a mental health issue (I am not linking this to ASDs, just another example!) that does not require hospitilisation or round the clock care/support...And yet still there is far more understanding and support available for sufferers of a wide range of mental health problems...

Ooh, it's late, and I can't think through my wooly brain to see if I've even got what you said right or not, BD!!! And my Cal is only 10, so we have'nt really got personal experience....but I do live in hope that some day understanding and support will be the norm....(Im starting to sound like John Lennon now, but I hope you catch my drift....)

 

Im off to bed!!!

Esther x

 

Esther . I do not agree with your theory that there is far more understanding and support available for sufferers of a wide range of mental health problems.

Mental Health is widely recognised as being the most under resourced section of the NHS.

Individuals with mental health issues are stigmatised and labled.

I am certain that in terms of rates of inprisonment and suicide rates those with mental health issues are statistically those most at risk compared with the general population.

I am obviously a strong advocate for improved provision for and understanding of AS.

However I have every reason to know that there is not more understanding and support available for those with mental health issues.

Karen.

[baddad]

I don't know that I agree wholly with that,BD.. Yes, there must be a united front on general disability rights but I DO think that some parts of the autistic community are certainly more disenfranchised than a majority of the rest of the disabled population. I believe that EVERYONE who has a disability deserves support that makes the transition with them as they move out of their teens and into adulthood. But I'm sure many will agree that if the disability is not immediately apparent then this is often not the case-Iit's so very hard to get the support even when the disability IS apparent, we had to fight for so much for my Dad.

I really do think that those members of society who are on the spectrum, and whose issues do not require the provision of ongoing, 24-hour care, are very much disenfranchised. The same goes for people who have a mental health issue (I am not linking this to ASDs, just another example!) that does not require hospitilisation or round the clock care/support...And yet still there is far more understanding and support available for sufferers of a wide range of mental health problems...

Ooh, it's late, and I can't think through my wooly brain to see if I've even got what you said right or not, BD!!! And my Cal is only 10, so we have'nt really got personal experience....but I do live in hope that some day understanding and support will be the norm....(Im starting to sound like John Lennon now, but I hope you catch my drift....)

 

Im off to bed!!!

Esther x

 

Hi pooks : That's kind of the point I was trying to make - that all sorts of adult services are equally scarce and the people who need them disenfranchised. Mental health is one area (the 'revolving door' has been a reality for over 20 years now), and the elderly etc... and despite all the new legislation accessability for wheelchair users in real terms has made little progress on a day to day basis. I totally agree that services are dire, but I think they are dire across the board. The problems autistic people face don't arise from a specific disenfranchisement but from a general shortfall in provision, and the fact that adult services are the poorest isn't exclusive to autistic people - it's the case in every area of disability and arises from a political agenda that concludes once somebody is out of the education system and an 'adult' that the return on investment is negligable. basically, once you've reached adulthood (in the politicians eyes - not mine I hasten to add) the potential for independent living and paid work etc is pretty much 'fixed', and it then beomes a matter of cheap warehousing rather than expensive greenhousing... It's horrible, but that's the way it is.

To change that, you've got to provide needs led support services, and ring-fencing actually works against needs led services, by allocating a specific chunk of the budget to a specific pool. In a way, it's like schools 'standard' SEN budget against individual payments - in theory, it is far the best way of doing it, but it falls flat when the budget doesn't meet the needs. On the other hand, direct payments miss completely those people who are less able (either themselves or via their advocates) to represent themselves, who are, often, actually the most disenfranchised and needy of all.

Joseph Heller had a term for it..................

 

BD

[pookie170]

Argh, see this is what happens when you log on and post in the dead of night!! Soz, BD, in the light of day and with a few hours sleep under my belt, I can read and comprehend your post and can finally say, I getcha. And can further say, 'D'oh!!'

 

Karen, I also want to say that I don't think I phrased things right- I quite agree that Mental Health services are horribly underresourced, I didn't mean to come across as saying all is well there- sorry!

Yet again though, a lot of provision comes down to where you live- I do know for a fact that its far easier to access Mental Health support services where I live than, say, Glasgow, simply because of the vast numbers of people in dear old Glasgow who have need of the service..... I have got to say that where I live for adults, there is more provision to assist and support those with certain mental health issues than there is for those on the spectrum, particularly HFAs.....

 

God, im as clear as mud aren't I? However, didn't mean to upset anyone,and I do agree with so much of what has been said here!!

 

Esther x

Edited April 12, 2008 by pookie170

[Karen A]

Argh, see this is what happens when you log on and post in the dead of night!! Soz, BD, in the light of day and with a few hours sleep under my belt, I can read and comprehend your post and can finally say, I getcha. And can further say, 'D'oh!!'

 

Karen, I also want to say that I don't think I phrased things right- I quite agree that Mental Health services are horribly underresourced, I didn't mean to come across as saying all is well there- sorry!

Yet again though, a lot of provision comes down to where you live- I do know for a fact that its far easier to access Mental Health support services where I live than, say, Glasgow, simply because of the vast numbers of people in dear old Glasgow who have need of the service..... I have got to say that where I live for adults, there is more provision to assist and support those with certain mental health issues than there is for those on the spectrum, particularly HFAs.....

 

God, im as clear as mud aren't I? However, didn't mean to upset anyone,and I do agree with so much of what has been said here!!

 

Esther x

 

Esther...yes you may well be right.I am posting from the perspective of an individual in inner London.

I thought I would say that I am not saying that provision for AS is adequate in my area.Karen

Edited April 12, 2008 by Karen A
addition to post

[Canopus]

What particular services do you have in mind for adults? Describe in detail.

[Mumble]

What particular services do you have in mind for adults? Describe in detail.

That's a really good question and has had me thinking - because of course the services I/others need are context dependent.

 

I guess something I may like at the moment would be an ASD specialist advocate who could understand me and help me access what already exists, but whom I wouldn't feel guilty about going to to ask for help or support.

 

Other things would be specific to my current environment - the university - I would love for my disability department to actually acknowledge that ASD exists - they have gone down the road of listing individual disabilities and I think it has been detrimental because it's then very easy to leave people out - I can see no rationale for instance as to why students with dyslexia, cerebral palsy, cystic fibrosis and mental health issues are included, but those with ASD (and others) are not. I'm not sure if should be about specific disabilities but about a willingness to listen to and engage with people - acceptance and understanding, that's what I'd really like, not being singled out. I think I've just contradicted myself there, haven't I? I guess I'm saying that if they're going to name individual disabilities then I want to be included, but I'd rather they didn't do that at all and looked at individuals rather than labels. That's not to say labels aren't helpful... Cor, I'm confuzzeling myself...

[baddad]

I guess something I may like at the moment would be an ASD specialist advocate who could understand me and help me access what already exists, but whom I wouldn't feel guilty about going to to ask for help or support.

 

Hi mumble ...

 

But that's open ended, isn't it? If you had an 'ASD specialist advocate' then shouldn't somebody with cerebral palsy have a 'specialist cerebral palsy' advocate and someone with dyslexia have a ......In addition to that, ASD (perhaps even more than any of the others mentioned) differs greatly in how it is manifest so you wouldn't need an 'ASD' specialist but a 'Mumble' specialist (ten years training and then she sacks you at the end of it! )

 

You have sort of answered that yourself in the next bit of your post:

 

I'm not sure if should be about specific disabilities but about a willingness to listen to and engage with people - acceptance and understanding, that's what I'd really like, not being singled out.

 

That's the key, I think... and it is a good argument, as I've said, against ring-fencing because it pigeon-holes people by a label rather than by needs...

 

As I've said, I'm all for improvements in services, but I think the way to achieve that is through better awareness/acceptance/tolerance across the board... all of which comes down to education and 'social reform' more than funding... the big problem is, we live in a society where disenfranchisement of some is seen as a 'good-thing' because it means more for the rest, and while the 'legitimate targets' shift from time to time (remember when the miners were the villains? single mums? Yoof? Lager louts? Tories? New labour? old labour? Communists? capitalists? (oops, I missed the capital out of Capitalist! ) Those with mental health issues...

Erm, rent a copy of Reggie Perrin and watch Reggie's conversation with Jimmy about his underground army!) the reality is that while the disenfranchisement of any minority is applauded the status quo is unlikely to change.

 

Blimey - where'd that soap box appear from?

In a nutshell - better understanding is the key - not better funding. If better understanding creates an environment that includes better funding (and i suspect it would) you get two birds with one stone*

 

 

 

 

----------

Our sponsors would like us to point out that no birds were harmed in the transcription of this over the top rant. baddad has been transered via wheelbarrow back to the maximum security wing and is now 'resting' comfortably

[Mumble]

you wouldn't need an 'ASD' specialist but a 'Mumble' specialist

That'd be me then. Ho hum, back to supporting myself

 

In my defence, I did say I was contradicting myself

[Mumble]

Ok, I've reworked it. How does this sound:

 

I guess something I may like at the moment would be an advocate with an understanding of ASD issues but who could still see the individual and who could understand me and help me access what already exists, but whom I wouldn't feel guilty about going to to ask for help or support.

 

[baddad]

I'd like an advocate too - preferably with lemonade and a hint of lime...

snowball fight anyone?

[Mumble]

I'd like an advocate too - preferably with lemonade and a hint of lime...

snowball fight anyone?

:shame:

 

I try to have a sensible discussion, and look what happens ...

 

(but you have given me a useful line against the witch who won't/can't/some other excuse, allow me an advocate ... :devil:)

[Canopus]

As I've said, I'm all for improvements in services, but I think the way to achieve that is through better awareness/acceptance/tolerance across the board... all of which comes down to education and 'social reform' more than funding... the big problem is, we live in a society where disenfranchisement of some is seen as a 'good-thing' because it means more for the rest, and while the 'legitimate targets' shift from time to time (remember when the miners were the villains? single mums? Yoof? Lager louts? Tories? New labour? old labour? Communists? capitalists? (oops, I missed the capital out of Capitalist! ) Those with mental health issues...

 

There are certainly pointers that say that people with AS are less popular with society than in years gone by. It might actually be the result of a label given to the condition, whereas in the past someone with AS would be seen as eccentric. I have a theory that if AS was still unknown in Britain, then kids would have a harder time at school but adults would have an easier time in the workplace simply on the grounds of lack of a label.

 

Can social reforms be implemented except via Eastenders? Every nation has a culture; and an identity; and a way it does things; and a set of values and traits which are admired - and others that are despised, all amongst other things. Something I have coined is a tea with milk in analogy to describe ingrained pieces of British culture and identity that will not go away in the forseeable future. It has crossed my mind that trying to make British society en-masse view AS as a highly desirable trait is like trying to make British society en-masse drink tea without milk in.

 

In a nutshell - better understanding is the key - not better funding. If better understanding creates an environment that includes better funding (and i suspect it would) you get two birds with one stone*

 

Exactly how much funding is needed to provide services to adults with AS? Until someone comes up with a clear figure then few people will be inclined to give a penny.

[Cat]

Exactly how much funding is needed to provide services to adults with AS? Until someone comes up with a clear figure then few people will be inclined to give a penny.

 

 

Before funding can be allocated it first needs to be decided under whose umbrella adults with AS come under. It would be helpful if the Government could decide and then inform LAs under whose remit adults with AS fall. A nice level playfield would be a good place to start.

 

My Region now boasts a newly formed autism consortium of which I am fortunate enough to be a member. The consortium covers the whole of the North East Region which has been broken up into four sub groups. What I have found so far is that every LA does it differently and services are provided by different providers. Some LAs cover AS with their Learning Disabilities Team, some do not. Some have AS under mental health, again some do not. I had huge fun trying to find out whose umbrella my own son would come under in my own LA. I was told that AS is not in the remit of the Learning Disabilities Partnership. After a two day phone around I was finally told that AS was covered by the Life Long Condition Team. Great - I rang them and asked if I was in fact speaking to the right team and if they did hold the remit for Aspergers Syndrome. I was asked 'What is it?' I replied that AS is a form of autism. I was asked 'How do you spell it?' I spelt it. I was told to hold the line. A few moments later I was told that I was in fact speaking to the right team that they did cover AS but had nothing to do with autism. I replied that AS is a form of autism and was told 'well we don't do it then'

 

This is what I said earlier about not even having a foot on the ladder. It would certainly help if people even knew what AS was. There are members on our consortium who, having come from mental health and learning disabilities backgrounds before moving across to autism, are shocked that services for people with autism and AS are so far behind other disabilities. Given that the prevalence of autism is growing rapidly it would suggest that service provision should be growing to. It's not.

 

There are far too few professionals around who are qualified to deal with adults who have AS so they are sent to see the professional who is deemed the next best thing. The next best thing often makes things worse for the adult with AS with catastrophic results. Telling a clinically depressed Aspie that they need to get out of the house, join some social groups, make friends have fun and get a life is not really the best way to help them is it?

 

There has been a big difference between the way the petition has been received and commented on by parents who have children with AS and the way that it has been received and commented on by parents of AS adults and the adults themselves.

 

For anyone who is interested in the way forward for adults with AS the following report might be worth reading. It can be found here http://www.aspectaction.org.uk/ The report was compiled by Luke Beardon, Senior Lecturer in Autism, Sheffield Hallam University and the late Genevieve Edmonds, an individual with Asperger Syndrome, who tragically died in February 2008

 

Cat

[baddad]

Hi all/canopus - I think you are absolutely right that people are resistant to change, but lets face it the world has changed massively in the past few decades so it's not a question of standing stiull but a question of how to move forward in the right direction... I haven't got the answers for achieving that, but it seems logical that those changes can't happen without big changes in how disenfranchised minorities are viewed by the wider population.

The reason I said you would kill two birds with one stone is that better understanding and acceptance would almost certainly provide more clarity about what disenfranchised people need. If you have that clarity, and a social agenda that promotes and encourages a willingness and desire to provide for those needs, it's a done deal!

 

I think the second part of your question - how much - is sort of a redundant question. Society today cares little (and is encouraged to care little) for the underdog. Putting a price-tag on providing for their needs wouldn't make people willing to provide it, it would just give them more justification for pointing an accusing finger and shouting "why should I...?

 

Just as I posted i saw the latest post from Cat...

couple of quickies:

 

It would certainly help if people even knew what AS was.

Before funding can be allocated it first needs to be decided under whose umbrella adults with AS come under.

Some LAs cover AS with their Learning Disabilities Team, some do not. Some have AS under mental health, again some do not. I had huge fun trying to find out whose umbrella my own son would come under in my own LA. I was told that AS is not in the remit of the Learning Disabilities Partnership. After a two day phone around I was finally told that AS was covered by the Life Long Condition Team. Great - I rang them and asked if I was in fact speaking to the right team and if they did hold the remit for Aspergers Syndrome. I was asked 'What is it?' I replied that AS is a form of autism. I was asked 'How do you spell it?' I spelt it. I was told to hold the line. A few moments later I was told that I was in fact speaking to the right team that they did cover AS but had nothing to do with autism. I replied that AS is a form of autism and was told 'well we don't do it then'

There are far too few professionals around who are qualified to deal with adults who have AS

 

All of the above are excellent examples of lack of understanding and awareness... social education, not funding problems...

 

Telling a clinically depressed Aspie that they need to get out of the house, join some social groups, make friends have fun and get a life is not really the best way to help them is it?

 

telling a clinically depressed anybody the above is not the best way to help them... not a reason for ring-fenced funding, but an argument for holistic assessment... you shouldn't be treating a clinically depressed person for 'autism' you should be treating them for clinical depression...

 

BD

Edited April 13, 2008 by baddad

[Tally]

Telling a clinically depressed Aspie that they need to get out of the house, join some social groups, make friends have fun and get a life is not really the best way to help them is it?

telling a clinically depressed anybody the above is not the best way to help them... not a reason for ring-fenced funding, but an argument for holistic assessment... you shouldn't be treating a clinically depressed person for 'autism' you should be treating them for clinical depression...

 

Depression is very common in undiagnosed or recently diagnosed adults with AS, who have lived the majority of their lives feeling like they don't fit in. It is a serious problem, and people with AS are far more likely to suffer depression than the general population. I have been in and out of the mental health system for 8 years, and told on many occasions by several different professionals in four different regions that I would feel better if only I would go out more, even at the time when I was working a full time job, and involved with many social activities connected with a 'church' - I don't know how I actually could have fitted more social contact in! I have been discouraged from cycling many times in favour of something more social, even though cycling is one of the few things that gave me real pleasure.

 

When I left the 'church' (which was more of a religious cult), I was encouraged to go back to them for the social contact. I did explain the level of abuse, manipulation and control that was going on, but my counsellor believed that the benefits of the social contact outweighed the negative effects of the abuse

 

When I first raised the possibility of AS with my counsellor, he started sending me to all kinds of completely inappropriate group therapies. After around a year he discharged me, telling me I was wasting NHS time and resources because I was refusing to co-operate with the treatment. My crime? I had not made any friends at group therapy. No one told me I had to make friends, he told me it would be good for me and help me learn coping skills. Afterwards he told me that I would feel like I fitted in if I met other people "with problems," and the only reason for my social difficulties is actually that I fear mentally healthy people Of course, he only told me this afterwards, thus denying me the opportunity to co-operate with his wishes for me to make a friend.

 

This type of medical advice has not caused me to feel any better. In fact, additional to long-term depression, I now find it difficult to trust the very people I need to approach when I need help.

 

It's difficult for me to explain how my experiences have affected me. This was not one badly educated person, none of the people I have seen have helped in any way. The entire mental health system is hard-wired to help people who feel better if they get constant social contact, and they need to be educated to understand that there is a significant minority of people who actually require some time alone. Education, research, training courses and materials do cost money, and if funds are not set aside particularly for the purpose of educating mental health professionals about autism, it simply will not happen.

Edited April 13, 2008 by Tally