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Supported living for 17 year old boy, Asperger syndrome and Generalised Anxiety Disorder
  • HarHer
    Posts: 336
    Hello,

    My 17 year old son (H) is currently an inpatient at a CAMHS unit. He was brought there under Section last month. He almost certainly will no be returning home upon his discharge because he has a very difficult relationship with his younger brother (who is almost certainly undiagnosed PDA) and we are undergoing our second Child Protection intervention.

    H. is a very sensitive, extremely vulnerable young man who would probably thrive in a supported group home with two or three other young people and resident staff. He needs someone he can go to to help him understand relationships, social behaviour and to guide him into adult life. When his anxiety overwhelms him, he hears voices and he is very open about what the voices 'say'. This has led him into trouble with the police.


    My problem is this. I need to find him somewhere to live. I am frightened that if the choice is left totally to CAMHS and Children's Social Care, he will be given the most convenient 'best fit' rather than something that would really help him. I have two leads to follow today, but I cannot make a referral (as a parent).

    Please can anyone who has been through something like this tell me what I can do to help my son.
  • Holly59
    Posts: 2,586

    HarHer said:

    Hello,

    My 17 year old son (H) is currently an inpatient at a CAMHS unit. He was brought there under Section last month. He almost certainly will no be returning home upon his discharge because he has a very difficult relationship with his younger brother (who is almost certainly undiagnosed PDA) and we are undergoing our second Child Protection intervention.

    H. is a very sensitive, extremely vulnerable young man who would probably thrive in a supported group home with two or three other young people and resident staff. He needs someone he can go to to help him understand relationships, social behaviour and to guide him into adult life. When his anxiety overwhelms him, he hears voices and he is very open about what the voices 'say'. This has led him into trouble with the police.


    My problem is this. I need to find him somewhere to live. I am frightened that if the choice is left totally to CAMHS and Children's Social Care, he will be given the most convenient 'best fit' rather than something that would really help him. I have two leads to follow today, but I cannot make a referral (as a parent).

    Please can anyone who has been through something like this tell me what I can do to help my son.[/quot
    I have not been through your experience but just looking would something like this be a transitional idea?
    http://www.stah.org/care-we-provide

  • HarHer if you PM me your location I will do some research on what's available.

    As to referral, can you check whether GP, someone at Parent Partnership or someone like that could refer on your behalf? Or maybe someone in the education department at the council? Sometimes it just needs to be a professional, not a specific one like a SW.
  • HarHer
    Posts: 336
    Hello,

    Thank you. I have made enquiries to a few places and one provider seems as though they may have something to offer. However, the process is long and drawn out because it involves sharing lives with another family. The Consultant at the CAMHS unit where my son is staying has invited he Health Commissioners to a meeting on Thursday and I think we will be discussing funding an a possible residential placement.

    The other option may be that my son stays with mys sister with support from social care until the shared living placement can be arranged.

    I don't really know what is best.
  • Holly59
    Posts: 2,586

    HarHer said:

    Hello,

    Thank you. I have made enquiries to a few places and one provider seems as though they may have something to offer. However, the process is long and drawn out because it involves sharing lives with another family. The Consultant at the CAMHS unit where my son is staying has invited he Health Commissioners to a meeting on Thursday and I think we will be discussing funding an a possible residential placement.

    The other option may be that my son stays with mys sister with support from social care until the shared living placement can be arranged.

    I don't really know what is best.



    Where do you think he would be happiest. Could you sister cope, has she any other commitments. Has he lived with her before, has she the experience you have . What happens if they take for ever to get the necessary funding and for example she can't cope. Is the support from Social Care experienced Health Care workers?
    I don't know all the issues but if he is happy where he is for the moment leave him there. One transition in my opinion is better than three.
    The other thing I am thinking is if the Council can do it as cheap as they can , eg your sister with carers they ain't going to hurry to pay out for proper residential care which he needs long term. Look long term.

    I am sure with your experience you will find the right answer.xxxxxxx




  • HarHer
    Posts: 336
    Hello Holly,

    Yes, it is really hard o make the right decision. Part of me clings to the idea that with love and attention from people he knows, he will be happy and gently transition from my sister's house to a shared living placement. It is he same part that imagines a team of effective outreach workers helping him along the way. It is the old argument that he would be better off being looked after by our family.

    However, the other part of me remembers last summer when we stayed at my sister's house for four months. He ran away and the police had to be called. He was found, scratched by thorns, half undressed on the banks of the river. The river is deep and tidal and if he had fallen in he would have drowned. He also would run around the garden in his bare feet to get thorns in his feet because he thought he had offended someone and he was hearing voices. He also woke us up screaming in the night and we found him curled up on he kitchen floor with a bag of kitchen knives by his side. Furthermore, he threatened to assault his cousin (my sister's daughter) because she told him off for cutting his arm in an episode of self harming. The outreach we got comprised a support worker who went out for a bike ride with my son once a week and then went off the radar for weeks on end.

    So, I think residential may be the answer, but I am a bit afraid of it. I am sure the Health commissioners and the Consultant will be able to tell me more about it.

  • Holly59
    Posts: 2,586

    HarHer said:

    Hello Holly,

    Yes, it is really hard o make the right decision. Part of me clings to the idea that with love and attention from people he knows, he will be happy and gently transition from my sister's house to a shared living placement. It is he same part that imagines a team of effective outreach workers helping him along the way. It is the old argument that he would be better off being looked after by our family.

    However, the other part of me remembers last summer when we stayed at my sister's house for four months. He ran away and the police had to be called. He was found, scratched by thorns, half undressed on the banks of the river. The river is deep and tidal and if he had fallen in he would have drowned. He also would run around the garden in his bare feet to get thorns in his feet because he thought he had offended someone and he was hearing voices. He also woke us up screaming in the night and we found him curled up on he kitchen floor with a bag of kitchen knives by his side. Furthermore, he threatened to assault his cousin (my sister's daughter) because she told him off for cutting his arm in an episode of self harming. The outreach we got comprised a support worker who went out for a bike ride with my son once a week and then went off the radar for weeks on end.

    So, I think residential may be the answer, but I am a bit afraid of it. I am sure the Health commissioners and the Consultant will be able to tell me more about it.



    After what you have just told me then Yes to residential care. My friends son has just started working for a Council as a Care Assistant , a number of his clients have complicated Mental Health issues, these carers have no training just thrown in at the deep end.
    I am sure your sister only wants to help you but what happens if he has a terrible accident whilst under her roof , she would never forgive herself. He needs secure accommodation with professional help 24/7.
    Don't even suggest this option to the Council. Your son deserves proper care and attention which so far they have totally failed to provide. Had it been there in the first place you are your family would not be in this heartbreaking situation you are in now.

    You are doing an amazing job staying so strong. Xxxx

  • I agree residential care is the only realistic option. In fact I agree with everything Holly59 has said.

    The LA is likely to take advantage if he goes to your sister's and try to keep him there as long as possible. It's a bit like being homeless, you have to show that there is no other feasible option, nowhere else to go.

    Is there any way to find out reviews of residential homes?
  • Holly59
    Posts: 2,586

    PlanetAutism said:

    I agree residential care is the only realistic option. In fact I agree with everything Holly59 has said.

    The LA is likely to take advantage if he goes to your sister's and try to keep him there as long as possible. It's a bit like being homeless, you have to show that there is no other feasible option, nowhere else to go.

    Is there any way to find out reviews of residential homes?



    http://www.turning-point.co.uk/mental-health/services-for-you/residential-rehabilitation.aspx

    Just a thought, could these folks have any suggestions for proper support. Is there a rating system for these specialist residential units. As PlanetAutism suggests I would be checking this out. You don't just want anything that's quick and easy, probably cheap as possible to get him off the books . You all deserve the best. xx
  • BerniehenryHi Har Her My heart goes out to you My son is 16 yo and I don't know how long more he is going to be able to live with us Its so heartbreaking I am thinking of you
  • HarHer
    Posts: 336
    Hello,

    Thank you Bernie. I have spoken to the gentleman from the shared living option (although we have yet to meet). He has told me that they match young people to families and the process involves a graduated period of meetings, phased stays and transition. This is good, but I do no think my son will be able to stay in hospital until such transition is complete.

    I spoke to another placement who offer something similar, but where the transition is a little less phased and he confirmed that our social worker had made an enquiry, but no referral.

    There is a CPA meeting today and I really want to know: who is in charge of finding the accommodation?
    What happens when my son reaches 18 (in a few months time)?
    Can support and assessment for supported living be carried out in hospital (so any provider has a comprehensive plan of my son's needs and abilities)? This would involve going on public transport; accessing public places; money management skills and so on. Currently, he is not allowed off the ward without an escort and even then, only for one hour.

    The forensic report has been sent and the Consultant at the hospital has a copy and so does my social worker. They have had the copies since Monday. However, neither my son nor I have seen the document yet.

    I am frustrated, but I hope to have a little more clarity on the situation after the meeting this morning. I am also worried because, although my son is 17, he is so childlike and so vulnerable. The wrong placement would be horrific.

    At the bottom of me, I wish the boarding school placement which we tried for in 2014 had come to fruition. Bernie, residential college or school may be something you son could try for.


  • BernieHenry hi HarHetHope things go well for you this morning We don't have residential college or schools in this country I have been promised funding for a 12 week residential course for my son its provided by nua healthcare here in Ireland But guess what they don't have any places provide him with this service and won't inthe near future I wanted this assessment because it would be in house his meds would be reviewed and as it was 2006 that he was initially assessed we would have an up to date assessment for him I suppose it's the same idea as what you would like to have done in hospitalThere is no place for him with any provider in the country at the momentNow nua healthcare are talking about doing an out reach programme with him but guess what They are only recruiting staff at the moment and when they are recruited it will take months to have them police vetted I don't like the sound of this at all Now we have no suitable school place for my son and the funding I fought so hard to get Has neither the staff nor the placement to allow for his needs to be met! What a set up!,my son is very like yours very childlike fragile and vulnerable I understand your worries completely The wrong placement for your son would be a disaster for him this country is no place to live if you are not Neuro Typical Let us know how you got on at yourmeeting
  • @HarHer:

    The forensic report has been sent and the Consultant at the hospital has a copy and so does my social worker. They have had the copies since Monday. However, neither my son nor I have seen the document yet.



    You need to be proactive as despite that you should get these things when they do, they are clearly leaving you as out of the loop as possible, so outright ask them (in writing - email/fax) for a copy and if it's not too late, before the meeting today so they can bring it along for you.
  • HarHer
    Posts: 336
    Hello PA,

    Just a quick reply. We attended the meeting and the Consultant told me that he could not give either my son or me copies of the report because we are not 'copied in' as recipients! My son is the subject of the report and should have a copy. I have parental rights. Should I go to the authors and request a copy?
  • Yes! If you have to make an official Subject Access Request under Data Protection Act 1998, do it that way. What a nerve. You were left off distribution for some reason due to genuine oversight or nefarious reasons but either way, you have that right. If an SAR has to go under your son's name due to age then do it that way with his signature if necessary. https://ico.org.uk/for-the-public/personal-information/
  • Bernie Henry Never heard anything more stupid in allmy life!The report would not exist only for you and your sons difficulties You are living in a democratic country despite the fact that inthe case of parents such as us Democracy is been denied us allthe time Id go for the jugular and tell the powers that be that you are fully entitled to see the report and you will take it further if you don't have access to it . surely you and your son should be the first people to be copied in ?After allyou two are the people who are going to have life changing decisions to make because Shout loud and louder and demand that your rights as a parent are upheld Scare the S--t out of them best WishesBernie Henry
  • KazK
    Posts: 255
    You will need to make an access to records request , I'm so sorry I can't remember the proper term. It takes up to 40 working days. Sorry to hear about your continued struggles. X ....edit.... Ah see PA has already detailed it
  • webbwebb
    Posts: 2,564
    Hi, when our children reach-

    18 in Education and Social Care
    16 in Health Dept

    they are treated as an Adult. This is why parents are not necessarily copied into documentation from the NHS/Health Dept!

    When our children reach the above age we no longer have automatic Parental Rights.

    I have learnt this the hard way - our son with PDA is now 22.

    THe NHS refuse to send us his appointment letters, they come in his name.
    The GP initially refused to speak to me on the phone - we wrote a letter to the surgery to ask them to speak to us on his behalf as he has a social communication disorder.
    Social Care seriously pulled rank when he was 18 - they went to his residential school with 3 residential care providers to assess him, without our knowledge!!!

    Try to email the person who wrote the report first and ask for a copy, it would be best to work with them/be on the right side of them, than to rub them up the wrong way as they will block you out for sure when he is 18!
    We are in the process of obtaining DEPUTYSHIP for our sons welfare to overcome these difficulties.
  • HarHer
    Posts: 336
    Hello Webb,

    Thank you. I am already searching for the contact details for the author of the report. However, my son has not received a copy either, and this is causing him some anxiety. My son is also at he age where he should be transitioning from Children's to Adult Services with respect to Social Care, yet no-one has told me who will be responsible for his care. I think the idea of gentle negotiation will rule here.

    I know that most people here will understand when I say that although our children mature physically, emotionally they are very vulnerable. The idea of deputyship appeals to me, but I do not know if applications will be compromised by the Child Protection issues.

  • If the author's name and location are not on the report HarHer, PM me and I will do some rooting to help you find them.
  • webbwebb
    Posts: 2,564
    Hi HarHer

    I'm in the Midlands and when our child reached 17 he was given a 'Transitions Social Worker', she was from the Adult Team but was only with us for a maximum of 18months whilst he transitioned into Adult services for Social Care.
    (We had had a childrens social worker and when the transitions social worker had finished her job ie he was settled into his residential college placement at 19, we then got an Adult Team Social Worker.)

    I would say you need a 'Transitions Social Worker' for your 17 yr old.
    Contact Adult Social Care!
  • HarHer
    Posts: 336
    Hello,

    Thank you everyone for the advice, I have found the author's e-mail address and made a polite request. I am also meeting my children's social worker on Wednesday so I will enquire about the Transitions social worker, just in case it is something that is already being considered.
  • If they refuse to send it to you HarHer, just ask that they send it to your son and he can give you a copy!
  • Bernie Henry Hi HarHer Totally agree with you even though our children mature physically my son is very fragile and innocent He has no idea of money and still loves the teletubbies Thinking of you wish I had more advice to offer My son is 16 and in Ireland I don't think there is any such thing as a transitional social worker Nobody seems to give a Damm here at the moment he is close to mvi g into the adult sector and the disability centre he is dealing with at the moment are just bidding their time for them to get him off their hands Until they have off loaded him to the adult services Oh the heartbreak of its all

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