adult care

[gladysmay]

I am a staunch supporter of the needs of anyone being requested by the individual concerned, in a kind of 'whose need is it anyway?' approach, what is an inconvenience to others is not a need in the strict sense of the term! very occasionally you come across folk who appear to be in need by all other indicators but who do not recognise this themselves (adult) at what point does one, and can one, offer or insist on additional support. also, it seems different agencies have different ideas about levels of need and can go OTT or do nothing.

 

 

[Tally]

It's very difficult to get a person to accept support unless they want it. I had this problem with my ex who refused all treatment, benefits or support because he did not want to be a burden on tax payers, and just expected his family, friends (and mostly me) to look after him and bail him out of the messes his illness led to.

 

I don't think you can really insist a person accepts additional support unless they are a suicide risk or are behaving illegally.

[chris54]

A good example of this would be my 90 year old mother. Allsorts of help has been arranged for her by us and SS but she just turns it all down and struggles on alone.We have managed to get her all the benefits she is entitled to, got the benefits woman from the council to sort that out, not an easy job for her.

The money,for reasons known only to some government department and my mother and shes not telling, only �40 something of it goes into the post office the rest goes into the bank and because my mother is unable to comprehend what a bank is she does not seem to think that that money is hers to spend. So she tells every one that she only has �40 a week to live on with the result that they all feel sorry for her and give her things not knowing that she has over �15000+ and growing in the bank. The funny thing is that she will write out cheques to pay bills and give away as gift's.

 

And there is nothing we can do to help her.

 

It all gets a lot more involved, to much to go on about here.

 

Just to say that when you see it from the other side, things look a lot different to what you often read about in the papers.

 

 

[baddad]

Hi Gladysmay - I totally agree with you about 'whose need is it anyway' and get really angry when I hear of local authorities (or care providers) imposing 'support' based on their perception of what someone needs rather than the person themselve's perceptions. Quite often disabled people are 'forced' to live by rules and expectations that are a matter of choice for the rest of the population...

That said, there's a huge grey area where what the way the disabled person is living their life may have a huge impact on others, and that needs to be considered too. Often, if it's family, then the decision is really a personal one for the person being impacted upon (i.e. in the case Tally's outlined herself, family and friends) as to whether they continue to deliver that support or walk away, but that's an absolutely huge decision to have to make and the burden of guilt associated with saying 'no' is of itself a huge impact on the emotional well-being of the person withdrawing support.

 

No help whatsoever, and I guess it comes down in a nutshell to that old adage - "you can lead a horse to water"

 

L&P

 

BD

[gladysmay]

Hi Gladysmay - I totally agree with you about 'whose need is it anyway' and get really angry when I hear of local authorities (or care providers) imposing 'support' based on their perception of what someone needs rather than the person themselve's perceptions. Quite often disabled people are 'forced' to live by rules and expectations that are a matter of choice for the rest of the population...

That said, there's a huge grey area where what the way the disabled person is living their life may have a huge impact on others, and that needs to be considered too. Often, if it's family, then the decision is really a personal one for the person being impacted upon (i.e. in the case Tally's outlined herself, family and friends) as to whether they continue to deliver that support or walk away, but that's an absolutely huge decision to have to make and the burden of guilt associated with saying 'no' is of itself a huge impact on the emotional well-being of the person withdrawing support.

 

No help whatsoever, and I guess it comes down in a nutshell to that old adage - "you can lead a horse to water"

 

L&P

 

BD

 

thanks, I guess I am thinking in the area of 'being led astray' or being vulnerable to manipulation by those with the power to make decisions and maybe that individual should seek legal advice or maybe an advocate but is unaware of how vital it is to do so, especially if those doing the manipulating are not actively seeking to do harm but misunderstand autism??

 

[baddad]

thanks, I guess I am thinking in the area of 'being led astray' or being vulnerable to manipulation by those with the power to make decisions and maybe that individual should seek legal advice or maybe an advocate but is unaware of how vital it is to do so, especially if those doing the manipulating are not actively seeking to do harm but misunderstand autism??

 

Again, it's hugely difficult because different people can have different ideas about what constitutes manipulation and advocacy.

As a carer I saw many situations where (i.e.) case managers (social workers), consultants etc were seeking to empower disabled people and parents disagreed with the opinions of the professionals. The parents, of course, considered these opinions unnecessary and intrusive and meddling, and had far more sway over the decisions their children ultimately made than the professionals because of the emotional influence involved, but it wasn't always in the best interests of the disabled person. Before my son came along I knew several people who worked professionally as advocates, and I think all of them at some point or another found themselves in situations where carer's/parents were asking them to represent their views rather than those of the disabled person. It is just as possible (in some ways even more so, given the added emotional aspects) for a parent to 'lead astray' a disabled person and to do so with absolutely the best of intentions, and far harder for the disabled person to 'resist' in those circumstances.

 

Hope that's helpful

 

L&P

 

BD

[Kathryn]

I agree with you BD, that over involved parents can be a problem and can stand in the way of adults getting the right kind of support. However in some situations, the adult themselves may be the barrier, possibly because they believe they do not need support when in fact they are being expertly but unobtrusively supported by their parents. The parents have no choice but to continue in this role for life if the adult child rejects all other agencies who might help them, and the parents are unable to approach other agencies without the adult child's cooperation or consent.

 

However I think Gladysmay is talking about adults who don't have parents to support them and are possibly in a worse position. Even overinvolved parents are likely to have their adult child's best interests at heart and some grasp of ASD and what makes their child tick. But aduts on their own, are particularly vulnerable, especially, as Gladysmay says, they are in contact with other agencies who may not understand ASD and they themselves do not acknowledge that they have difficulties due to ASD . They might benefit from legal help and/or advocacy in some situations but may be unaware of their own needs, the services available and may not be able or willing to initiate the process of getting this kind of support.

 

K x

 

 

 

 

[Mumble]

I would give anything to have an over-involved parent

 

Quite often disabled people are 'forced' to live by rules and expectations that are a matter of choice for the rest of the population...

And judged by rules that NTs don't always conform to.

 

Support's always a difficult one - I do worry that if I had the support I should have (though it would be nice to actually get it so I could make a proper judgement) I would become less able to cope as independently as I do.

 

[baddad]

I agree with you BD, that over involved parents can be a problem and can stand in the way of adults getting the right kind of support. However in some situations, the adult themselves may be the barrier, possibly because they believe they do not need support when in fact they are being expertly but unobtrusively supported by their parents. The parents have no choice but to continue in this role for life if the adult child rejects all other agencies who might help them, and the parents are unable to approach other agencies without the adult child's cooperation or consent.

 

I said that, I did, in my first post see! I did, I did, I said just that!

 

However I think Gladysmay is talking about adults who don't have parents to support them and are possibly in a worse position. Even overinvolved parents are likely to have their adult child's best interests at heart and some grasp of ASD and what makes their child tick. But aduts on their own, are particularly vulnerable, especially, as Gladysmay says, they are in contact with other agencies who may not understand ASD and they themselves do not acknowledge that they have difficulties due to ASD . They might benefit from legal help and/or advocacy in some situations but may be unaware of their own needs, the services available and may not be able or willing to initiate the process of getting this kind of support.

 

K x

 

It is a hugely wide topic, but i guess if the person is an adult and feels they do not need support and the services that are supporting them (assuming the agencies are professionally monitored) don't see any reason for concern then it is a matter of perspective, and the perspectives of the adult individual must be the ones taken into consideration. Non-disabled adults do not (unless they run foul of the law) have other people making judgements about how they should or shouldn't live, even if some of the choices they make would not be the choices most people would make. That may be really hard for people around them, but they do have a right to mess up their own lives. If disabled people are living independently and are not judged 'medically' unfit to care for themselves (I know that's a really cr*p way of wording it, but can't think of another way right now) they have the same rights.

Non-disabled people make 'wrong' choices all the time - if you take that right to make wrong choices away from a disabled person purely on the basis that they are disabled rather than on a medical assessment that has shown them to be unfit to make that choice then it's discrimination.

(?)

 

[gladysmay]

I said that, I did, in my first post see! I did, I did, I said just that!

 

 

 

It is a hugely wide topic, but i guess if the person is an adult and feels they do not need support and the services that are supporting them (assuming the agencies are professionally monitored) don't see any reason for concern then it is a matter of perspective, and the perspectives of the adult individual must be the ones taken into consideration. Non-disabled adults do not (unless they run foul of the law) have other people making judgements about how they should or shouldn't live, even if some of the choices they make would not be the choices most people would make. That may be really hard for people around them, but they do have a right to mess up their own lives. If disabled people are living independently and are not judged 'medically' unfit to care for themselves (I know that's a really cr*p way of wording it, but can't think of another way right now) they have the same rights.

Non-disabled people make 'wrong' choices all the time - if you take that right to make wrong choices away from a disabled person purely on the basis that they are disabled rather than on a medical assessment that has shown them to be unfit to make that choice then it's discrimination.

(?)

 

 

totally agree, nt's make 'wrong' choices all the time and do not come under the scrutiny just for being 'disabled' and I believe this is against the law, possibly Human Rights and some other acts cant think of right now, what I am getting at is scenarios where the root problem is nt professionals mistaking asd behaviours as getting it 'wrong' and then taking action on that, another professional who is very aware of asd behaviours steps in and says, whoah, you cant do that, but may be over ridden?

 

complex but these things are happening.

 

[gladysmay]

I agree with you BD, that over involved parents can be a problem and can stand in the way of adults getting the right kind of support. However in some situations, the adult themselves may be the barrier, possibly because they believe they do not need support when in fact they are being expertly but unobtrusively supported by their parents. The parents have no choice but to continue in this role for life if the adult child rejects all other agencies who might help them, and the parents are unable to approach other agencies without the adult child's cooperation or consent.

 

However I think Gladysmay is talking about adults who don't have parents to support them and are possibly in a worse position. Even overinvolved parents are likely to have their adult child's best interests at heart and some grasp of ASD and what makes their child tick. But aduts on their own, are particularly vulnerable, especially, as Gladysmay says, they are in contact with other agencies who may not understand ASD and they themselves do not acknowledge that they have difficulties due to ASD . They might benefit from legal help and/or advocacy in some situations but may be unaware of their own needs, the services available and may not be able or willing to initiate the process of getting this kind of support.

 

K x

 

yes, Kathryn, it is a complicated scenario on all kinds of ethical levels as well as trawling through statutory duty or legal positions on rights etc, which seems to be what families end up having to try to understand and deal with,so easy for all involved to get it wrong. can we just standby and watch someone fail, we would not allow someone who was sight impaired to for example to take the wrong exit, we would provide alternative means of communicating the much needed information to be fair and evenhanded.

 

thanks for some very interesting input on this:)

[chris54]

When it is someone close to you and you see them making the wrong choices in life it is hard not to feel guilty about it.But unless that someone is deemed unfit for whatever reason to make those decisions then we just have to stand back.

 

We all talk about our rights. Which one of us is going to be the one who takes away their rights because they do not conform to "the norm".

 

I know what you are saying about ASD but where do you drew the line.

[gladysmay]

When it is someone close to you and you see them making the wrong choices in life it is hard not to feel guilty about it.But unless that someone is deemed unfit for whatever reason to make those decisions then we just have to stand back.

 

We all talk about our rights. Which one of us is going to be the one who takes away their rights because they do not conform to "the norm".

 

I know what you are saying about ASD but where do you drew the line.

 

yes, agree, what if the 'wrong' decision is the one being taken by the professional and yes, the authority to say no to that decision lies always with the individual, nt or otherwise - but that may not be 'recognised' by the individual i.e. has all or nothin g thinking, etc etc....you cannot tell someone what to do but you need to be sure they do have the information and information is for all of us, power:)

 

[bid]

This is an extremely interesting book that's part of the uni course I'm doing at the mo: Advocacy in Healthcare, Kevin Teasdale.

 

http://www.amazon.co.uk/Advocacy-Health-Ca...8542&sr=8-1

 

Some possibly relevant chapters: Empowering Clients to Self-Advocate; Advocacy Schemes for People with Special Needs; The Role of Patients' Relatives.

 

It might be a helpful starting point, Gladysmay...

 

HTH

 

Bid

Edited January 7, 2009 by bid

[baddad]

yes, agree, what if the 'wrong' decision is the one being taken by the professional and yes, the authority to say no to that decision lies always with the individual, nt or otherwise - but that may not be 'recognised' by the individual i.e. has all or nothin g thinking, etc etc...

 

Hi Gladysmay/all - This is such a difficult area to generalise about, but looking at the above:

The professional thinks a certain choice is 'right', the disabled person thinks that choice is 'right' and the person who thinks it is wrong is a third party. However well intended that person might be their view that it is the 'wrong' decision may be flawed. If they have sought further (i.e. second or third) professional opinions and they have agreed with the first professional opinion, and those professionals have arrived at those conclusions through a process of consideration rather than 'rubber stamping' the initial professionals conclusions then it is actually more likely, however strongly the third party might feel, that they're perception is the flawed one.

 

There's part of a quote that sums it up:

Everything we see is a perspective, not the truth. [Marcus Aureliius. AD 121 - 80]

 

One thing that was very relevent to this 'different perspectives' some years ago was the idea of disabled people (especially learning disabled) having sexual relationships and being supported and educated about contraception etc... Huge numbers of parents found this very disturbing and challenging, because they did not consider their (adult) children emotionally developed enough to 'cope' with relationships. The reality of the situation, however, was often that (regardless of any judgements about emotional development) the adults were physically developed, were sexually interested and experimental and were wanting such relationships, and to deny them those freedoms on the basis of a third parties judgement would be discriminatory. However heartfelt and well intended the objections of the parents were it went against everything the disabled person themselves wanted. If there is a clear 'danger' attached in allowing a disabled person a freedom then that has to be looked at and qualified by 'risk assessment', but risk assessments have to be undertaken by independent panels who haven't got any preconceptions about the outcome.

 

As I say, impossible to 'generalise' on such a complex topic, but I hope that helps

 

[Karen A]

yes, Kathryn, it is a complicated scenario on all kinds of ethical levels as well as trawling through statutory duty or legal positions on rights etc, which seems to be what families end up having to try to understand and deal with,so easy for all involved to get it wrong. can we just standby and watch someone fail, we would not allow someone who was sight impaired to for example to take the wrong exit, we would provide alternative means of communicating the much needed information to be fair and evenhanded.

 

thanks for some very interesting input on this:)

 

Hi.I thought it worth mentioning.I had a lot of practical experience of supporting people with physical disabilities as a community nurse in my previous life.Actually a person with a sight impairment would be given the information and would choose for themselves which exit to take ....allowing does not come into the discussion where an adult makes an informed decision and is considered to be mentally capable.

I have nursed many people who continued to live in awful conditions.I visited elderly people at this time of year when outside was warmer than the temperature in the house.Some of those people still had outside toilets.It is very difficult to understand why a person might wish to remain in the situation.Some of those people had caring families who were desperately frustrated.However it is actually very difficult to make a case for an individual being of insufficient sound mind that they are unable to make decisions for themself.

It remains a basic human right that as an adult one can decide how to live ones life.Karen.

Edited January 7, 2009 by Karen A

[Kathryn]

Agree with what you say, BD and Karen. But coming at it from a different angle - what if an adult is in danger of having his/her rights taken away because the professionals involved, owing to an incomplete understanding of ASD, misinterpret the adult's behaviour as indicative of mental illness, or instability due to other factors, and therefore a possible risk to him/herself or others? I think this is the question Gladysmay is posing.

 

K x

Edited January 7, 2009 by Kathryn

[baddad]

Agree with what you say, BD and Karen. But coming at it from a different angle - what if an adult is in danger of having his/her rights taken away because the professionals involved, owing to an incomplete understanding of ASD, misinterpret the adult's behaviour as indicative of mental illness, or instability due to other factors, and therefore a possible risk to him/herself or others? I think this is the question Gladysmay is posing.

 

K x

 

 

Hi Kathryn - The inherent difficulty there is who is making the 'judgement' about the professional's incomplete understanding or misinterpretation of the symptoms? And is the third party better qualified to understand or make the correct interpretation?

I think procedures have changed for the better now, but this kind of situation could develop within the mental health sector when people were sectioned... It's the classic 'catch 22' that the person who pronounces you fit or unfit defines what fit/unfit means, but that situation doesn't involve an adult who is perceived as being able to make their own decisions...

 

I'm a bit confused with the outline you've offered, , because if it is the medical professionals that that have misinterpreted the adults behaviour as indicative of mental illness or instability, then that professional interpretation is the one that 'opens the door' for a third party advocate(?)

 

Hope that makes sense

 

L&P

 

BD

 

[Karen A]

Agree with what you say, BD and Karen. But coming at it from a different angle - what if an adult is in danger of having his/her rights taken away because the professionals involved, owing to an incomplete understanding of ASD, misinterpret the adult's behaviour as indicative of mental illness, or instability due to other factors, and therefore a possible risk to him/herself or others? I think this is the question Gladysmay is posing.

 

K x

 

Ah.That is a complex question that is more difficult to answer.

I can think of several more questions or issues that come to mind but not many answers.

It appears to me having been here a while that mental health professionals do not necessarily have much knowledge of ASD .So could misinterpret the adult's behaviour as indicative of mental illness.

If an individual adult has a diagnosis of ASD at what point would professionals consider that they are unable to make informed decisions and who decides ?

If an individual has an ASD dx but also develops mental health problems the situation is even more complex.

I am not very up to date.I know that there have been recent changes or there are changes in the pipeline regarding mental health.I think the changes include the option for enforced treatment in the community .However in theory it was always the case that the only way an adult could be forced to have treatment was via a section.An individual could only be sectioned where there was considered to be a significant risk to others or serious risk of deliberate self-harm.

In my practical experience which was in general nursing rather than specifically in mental health,the most common issue was not one of deliberate self-harm but of what would probably be described as self-neglect .If an individual is not considered to be a serious risk then in my experience professionals are more likely to not do enough than to be in danger of overstepping the mark.

In the inner city boroughs I worked and live in there are so many people living in unsatisfactory conditions with little support that it is very unlikely that anyone would be sectioned due to anything other than an imminent serious risk to self or more likely others...... Karen.

 

[Karen A]

I have found the NAS information on the new mental health act which is what I was thinking about.

It is on this page and may be useful.http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=158&a=16644

[gladysmay]

some really interesting debate going on here thanks to all:)

 

putting it another way, a young male is picked up by the police and they misinterpret some behaviours/reactions as guilty of hiding something or being obstructive and lock them up in a cell, causing even more behaviors and so on....

 

what if the young male is not diagnosed but rellies suspect asd but gp is not knowledgable...

 

sorry to be vague but the above scenario is nearer to the root of my question. how long does it take to 'accept' a diagnosis, maybe some prefer not to know but may experience disadvantage at some point, true, this may be just an inconvenience but if the fallout were say, more tragic?

[Karen A]

The information on the NAS site re the latest guidance on compulsory treatment states ''As with the 1983 Act, a person whose only mental disorder is a learning disability is excluded from the definition and therefore cannot be detained, unless their learning disability is associated with ?abnormally aggressive or seriously irresponsible conduct ''.So if an individual has ASD and no other psychiatric dx then it appears that the professionals involved in the section would need to be able to demonstrate that they believe those criteria can be met.It is recognised in the NAS response that where an individual has ASD and mental health problems the situation is then more complex .

[Karen A]

some really interesting debate going on here thanks to all:)

 

putting it another way, a young male is picked up by the police and they misinterpret some behaviours/reactions as guilty of hiding something or being obstructive and lock them up in a cell, causing even more behaviors and so on....

 

what if the young male is not diagnosed but rellies suspect asd but gp is not knowledgable...

 

sorry to be vague but the above scenario is nearer to the root of my question. how long does it take to 'accept' a diagnosis, maybe some prefer not to know but may experience disadvantage at some point, true, this may be just an inconvenience but if the fallout were say, more tragic?

 

I can only speculate and see what others think.

I fear that without a diagnosis even where the gp is supportive the male probably has very few rights at all regarding asd.

Any advocacy or rights within legislation are I think probably dependent on a clear diagnosis.

To be honest even if an individual had a clear ASD dx it may not change the situation very much.The situation regarding being detained by the police is different to the one I have been talking about [mental health legislation ].I think though that although individuals with ASD may have extra rights to advocacy they can still be detained by the police if there is cause to do so.After all as has been mentioned on the Forum previously having ASD does not prevent an individual from committing an offence. Karen.

 

 

[Tally]

I think the best option is probably to make sure the relatives make the police and the suspect's solicitor aware they suspect ASD. The police may or may not bear it in mind, but the solicitor can help the suspect access proper assessment by a skilled professional.