Advise on an advocate please - change of mind??

[JeanneA]

Hi, going on from my 'advocate' thread: I would like a little advise please.

 

I have had a referral form through from the 'autism advocate' I found and I am about to fill it in.

I enquired about an advocate to try to help/support Glen (and us) staying where he is next year in the out of county care home where he is settled and happy in. Glen's social worker & essex county council want to get Glen back to Essex next summer due to funding mainly and of course being nearer home.

 

Although I would obviously like to have Glen nearer home I also want what's best for Glen. He's been in Coventry now since May 2011 and altough it took some time for Glen to settle which was to be expected, he has now settled down and I feel taking him away next year could be so distressing for him and all his anxieties/aggession would undoubtly surface so you can see why I''m worried.

 

On the referral form from the advocate, it has various categories for you to tick as to what you require an advocate to do on your behalf. I will not tick any because at the end of this it says 'is there another reason you require an advocate which is what I will tick and explain my reason, i.e. 'wanting an advocate to speak on Glen's behalf regarding staying where he is next year'.

 

If I change my mind for any reason, i.e. not wanting an advocate can I get out of it after the referral form is done? and also if I change my mind afterwards if I feel the advocate isn't doing what I wanted her to do, can I get out of it ok? I don't want to do the wrong thing thats all, I hate signing something and then regretting it or can't get out of it if you see what I mean?

 

Hope someone can advise me, thank you.

[dekra]

I really don't know anything about advocates sorry Jeanne but my concern would be that an advocates job is to speak for Glen not for you. And whilst you want what is best for Glen and what you feel Glen wanted - their interpretation of what is best and what Glen wants maybe completely different so they could be advocating for something completely different from you with both of you believing you are acting in Glens best interests. Neither of you may be wrong in your beliefs but you may find yourself at loggerheads. There is also the fact that sometimes Glen's best interests and what Glen wants may be different things. Is an advocate obliged to carry out Glen's wishes or act in his best interests? Do they have a judgement call between the 2 as a parent would and if so do you trust the person appointed to make that sort of judgement call.

 

Sorry I've not really helped but personally whilst it might take a degree of pressure off you it may also remove a degree of control you have and I your circumstances I would worry about that. On the otherhand you need to think to the future, will your daughter be able/willing to take on the advocates role that you currently fullfill if something were to happen to you. Maybe it is time to pass it on to someone else.

[JeanneA]

Hi dektra, thanks so much for your advice. This is really is a hard one to call so to speak. All I want is an 'extra' voice on Glen's behalf but like you say I don't want to do the wrong thing by making the situation worse. I need the advocate to be on my side. Glen is not able to say what he wants so the advocate would be speaking on his behalf which is what I have been doing. I would not want her to say the opposite to myself obviously. I guess before I complete the referral form I should speak to her. I do know that there are no legal ties in appointing an advocate so that is something.

[dekra]

I think speaking to her is important, you are placing a whole lot of trust in her and as I said previously you do need to think of the future and taking time to build up a relationship with someone you trust now maybe helpful in the long run.

 

Also playing devils advocate myself here - if you win the battle with the council to keep Glen where he is at the moment will the same battle not arise a year, 2 years, 5 years down the road? Maybe it might be worth considering the long term benefits if a suitable placement is available closer to home. IF there is a suitable placement then whilst in the short term Glen might be distressed but there won't be a constant battle to keep him where he is and he's closer to be able to establish a better home visit schedule then it may be worth that short term difficulty. It isn't just about Glen it's about the family unit remember, you are important too. Less stress and better contact for you is important IMO and you might think me nasty for saying that but it might be worth that sort term distress to Glen for him to have you at your best for him.

[Lyndalou]

Hi Jeanne

 

Don't have much time to write at the moment so this is a brief reply. When I worked as an advocate I actually had two roles. One role was to advocate on behalf of my clients, often with incapacity. As Dekra says, I was speaking on that person's behalf and there was a chance that what I advocated for was viewed negatively by family members. I tried to develop a good relationship with families and asked for their views to lessen the chance of this happening but if my client told me they had one view and the family had the other then I was to put forward the client's view. Of course, what was in the person's best interests and what they wanted could clash but I had to exhaust all avenues in finding a way to achieve what the person wanted first. Often trying to ensure that the person's best interests were also being taken into account was worked towards at the same time because I really couldn't separate the two! When what was in the person's best interest outweighed what the person said they wanted was different in every case. Sometimes it only took one conversation with carers and family members after having spoken to the client to determine that it was unlikely the person would get what they wanted but at all times I had to be seen to be on my client's side, fighting their corner. Sometimes, the situation was much more complex, for instance if the client had fluctuating capacity or if their condition had completely changed their personality leading them to have even opposing views to what they had prior to their illness. In this case, family members were invaluable as they could say what the person USED to say about what they wanted.

 

My OTHER role was to work with family members (and sometimes close friends) on their relatives behalf. This meant fighting the RELATIVE'S corner and putting forward their views THEY had on behalf of their mother, father, sibling or spouse. In this case, although when I spoke to the person with incapacity and took their viewpoint into account which I discussed with my client (I didn't want to be holding back information in this regard) ultimately it was the RELATIVE'S viewpoint I put forward. I accompanied them to meetings, I spoke to social workers, doctors, housing officers, carer organisations. One relative for instance I worked with on an ongoing basis over 2 years. Both her siblings lived in supported accomodation - one sibling was severely learning disabled and had Fragile X and shared a flat with someone he had a volatile relationship with. I went to regular meetings with her about his care. Her other sibling attended day care facilities one of which closed down of the course of time I worked with her leading to her becoming very distressed. I then also accompanied her to GP appointments as she became very upset trying to explain her own situation to the doctor among other things.

 

Lynda

[JeanneA]

Hi Lynda, I was wondering whether it is me that should have an advocate and not Glen? I am the one the knows Glen the best and have always spoken on his behalf. I don't believe an advocate would get anywhere with Glen as he just wouldn't respond, wouldn't be able to answer any questions etc. So is it possible for me to have an advocate and not Glen, would you recommend this?

[trekster]

Doing a google search has resulted in finding this book;

 

http://www.jkp.com/catalogue/book/9781853029806

 

"

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Autism, Advocates, and Law Enforcement Professionals

 

Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders"

 

If the cost is too great how about Glens social worker changing to someone from the Coventry area? After living in a certain area (which your son is doing) for adults at least the area you move to should take over your duty of care.

 

"If you were to move from one local authority to another, the usual process is for your care package to initially transfer over to the new local authority who should continue to provide the same level of care initially so there are no gaps.

 

Shortly after you move, the new local authority would complete their own community care assessment or self assessment questionnaire to determine your current needs. Your care package may then increase, decrease or stay the same, depending on the outcome. The new local authority would use the same Fair Access to Care Services (FACS) Criteria that your current local authority does, with most local authorities now only providing support to people in the substantial and critical categories."

 

This was in response to my enquiring with someone well versed in 'social services' about the current system.

[Lyndalou]

Hi Jeanne

 

I would think that having an advocate working with you to help you put forward what you feel is in Glen's best interests is a sensible way to go. You would need to check that this option is available to you through the service you are in contact with because it would depend on what the Autism Advocate is contracted to do as she may or may not be able to work with you and you might need to look elsewhere.

 

Most of the referrals we had through professionals to work with adults with incapacity were in cases where there was no family member acting as a 'natural' advocate or where professionals felt that family members were not working in the person's best interests (such as the time that one of my clent's relatives had systematically been stealing from her for 12 years). It could be very difficult to gather information about a person if there were no relatives to talk to and it could take a number of meetings to be able to document a pattern in what the person said. In cases of working with relatives, there were a number of reasons as to why they referred themselves for advocacy. They might have felt they were not listened to or were patronised in meetings or that they were overwhelmed by the (often very new and/or difficult) situations they found themselves in and needed help to find out information or know what their and their relatives rights were.

 

Let us know how you go.

 

Lynda

Edited October 20, 2012 by Lyndalou

[Sally44]

Do you have Power of Attorney for Glen?

[JeanneA]

Wow trekster, firstly thank you so much for this info, I had no idea that Glen could have a social worker in Coventry, why hasn't Glen's current social worker in Essex not told me this?? I will certainly purchase the book also, you a star.

 

Hi Lynda yes I am going to look into this on Monday and see if I could get an advocate to represent me so to speak for Glen's best interests.

 

Hi Sally, yes I have power of attorney over Glen, do go on :-)

[JeanneA]

One thing I've just thought of trekster is would I have to move to Coventry as they wouldn't be possible in my case, or as Glen is now an adult the social services could 'swap over' so to speak?

[Lyndalou]

Thought I'd clarify that even if you have a Power of Attorney, you are still entitled to advocacy assistance. It makes no difference to what rights you have in that regard

[JeanneA]

Thanks Lynda :-)

[JeanneA]

One other thing I meant to say was the advocate I've contacted has an autistic son of her own so is very knowledgeable where autism is concerned, she has been an advocate for 5 years and she now specialises as an advocate for autistic children and adults.

[trekster]

Sounds hopeful and im always happy to help you JeanneA :-) you're welcome. Unsure re the 'which authority is responsible for your son scenario' but if Essex wont pay then maybe Coventry will instead.

[dekra]

Just a thought on the LEA situation Jeanne.

 

Whilst he was in school his home address would officially be yours even though he was residential I assume so that would make him the responsibility of your LEA.

 

However now he is an adult and if I am correct in thinking has moved to an adult residence then that is is permament place of residence and therefore you could have a case to transfer his care to the LEA for that area. At the end of the day Glen won't be coming home to you for anything other than visits and the home is for all intents and purposes his home therefore his LEA should reflect where his home is. Also if he is settled and you are happy with the care he recieves there despite the distance for you then it would be helpful to have the Coventry LEA (West Midlands?) covering him for funding and social work as this is the most secure long term solution for Glen.

 

There is a grain of a memory about Glen still being classed as in education until next summer? Have I remembered that right? If that is so that might be why they want to move him when that ends. That might also mess up the residential status as I suggested above, but I still think it is worth pursuing. On the other hand is WM LEA able to provide services to the same level as Essex? The last thing you want to do is fight to change LEA then realise it was a huge mistake.

Edited October 28, 2012 by dekra

[JeanneA]

Hi thanks for your comments. Yes Glen is in education until next Summer. From July 2013 Essex County Council want him to move back to Essex so I don't if Coventry would be able to 'take on Glen' so to speak before then. I guess I would have to look into it somehow. Glen has moved to an adult residence 16- 25 year olds, the home he was in (which belongs to the same group) were keen to get him in his current because as the manager told me Glen would have more chance of staying there than be moved by ECC so she moved him due to his age and to help us keep him there if you see what I mean.

 

I will try and pursue this matter and see what I can come up with you. Many thanks for bringing this to light, much appreciated.