Services without social services

[BeatriceH]

Is it possible to access services, such as training, employment, and social opportunities anywhere without the involvement of social services? My son is 19 and has fragile x syndrome and autism. He's in school until July but no one is doing enough to make sure he's got a suitable placement once he's finished. We're in Wales at the moment but I'm thinking of moving to Bristol.

[Iolo]

Hello. I do not know the Welsh system but in England young people with needs are entitled to an Education Health Care Plan until 25 years. What that means is extremely variable but I would expect that he/you should be able to access careers advice which I would hope could link him into supported employment projects. It’s worth checking with his school. There are also non-residential vocational colleges and/or residential colleges that might be of interest. Failing that I would just Google ‘supported employment Wales/Bristol’ or ‘Young peoples projects Wales/Bristol’. We have an organisation called PLUSS in our area that provide supported employment and United Response run post educational projects. Sadly I get the sense this stage of young peoples lives continues to be a minefield.

[BeatriceH in reply to Iolo]

Thanks Iolo. In Wales we still have a statement until 19 years - the system is changing so my son will be one of the last ones in this outdated process.

I have got him a place in a residential college but this is against the recommendations of the careers advisor, and social services as no one will fund an out of county placement. As a result, the information they're supplying for the funding application is false and it's bound to fail.

I wanted to find out if there are services available without gatekeepers as my involvement with them is causing me a lot of health problems.

[SpeedyH]

Perhaps join a local Carers group to find out what opportunities for the things you mention they use and recommend. Arrange to contact or visit these and see if they would meet your son’s needs and if they have spaces. Ask what you have to do to get your son a place there and can they help with this. Then, armed with this information, either contact adult social care and say you want an urgent assessment of need or perhaps ask the school to arrange an urgent review of EHCP. It is really important that you do not give the impression that you are happy to care for your son full time without services after July. Tell them that you are not available to do this and that he will be at risk if there isn’t something set up for him from July. Good luck.

[BeatriceH in reply to SpeedyH]

Thank you. As we're rural, there isn't much in the way of groups - other parents I've asked are having the same kind of experience and just give in to what they're offered.

There is a place at local college so they wouldn't expect me to care for him full-time but it's not going to be suitable for him long term, and there are no social opportunities around that placement, which is another thing he needs.

My son's mental health is suffering because of a lack of local support and I need to get him out and somewhere suitable.

[BenjiB]

We had to do everything ourselves when my son left school at 19. The LA weren’t interested in helping really. We started looking the year before, visited loads of places and finally settled for a residential college place. We had a fight on our hands though! We found a place, they assessed him and offered a place in the September of his final year. He had a few days there that academic year and also stayed over night a couple of times. As far as we were concerned he was going there. However in June, the month before he left school the LA said they wouldn’t be funding and they planned to cease to maintain his EHCP. Long story short we had to go to tribunal and he finally started there the following year.

You should contact colleges now and look around a few taking copies of his EHCP with you. The LA like to try to cease to maintain EHCP’s’ at 19 although in theory they have to have a good reason in reality they don’t really care. Your child is entitled to stay in education until 25 . I wouldn’t count on any help though from the LA.

Have a look at IPSEA. It’s the best resource for educational stuff. There’s lots of info there on your legal rights and also standard letters you can use. You can also book to speak to an advisor (although that’s not always easy as they are so overwhelmed).

[BeatriceH in reply to BenjiB]

Thank you for replying. I did as you said last year - took the initiative myself and went for assessments at a residential college. He has been given a place there on a work programme but, as with your experience, funding doesn't seem likely. It's taken me 6 months to even get the careers advisor to agree to applying for funding there, but every MDT meeting makes it clear that the information they're collating (social worker, school, careers advisor) is false and will result in the application being rejected.

They're trying to push me to apply for unsuitable local options as a 'back up' but what that really means is they're lying about his needs and what is offered locally as it fits with them to place him here and not go out of county.

My son's mental health is bad at the moment because he's so isolated due to lack of services here. I'm worried that another 2 years of local college (expensive babysitting) will not solve his problems and only lead to him making no progress and having no options at the end.

All professionals involved are creating the narrative that this is not what my son wants but what I want (my son can't really articulate what he wants and has never been explained what his options are). I've had a mental crisis because of the constant arguing and gaslighting and wanted to see if there's a way of finding a work programme and social opportunities without having to fight the gatekeepers!

We're in Wales so he still has a statement (written when he was 5 and unchanged). IPSEA only operate in England, but I've been in touch with the Welsh equivalent and they can't help as the professionals' opinions hold more weight than mine in the application process.

[BenjiB in reply to BeatriceH]

Oh gosh what a nightmare. If funds permit you may need to get your own assessments done. It is very expensive though. We had reports from a social worker, educational psychologist, salt and an occupational therapist.

It’s hard to advise as the laws may be different there. Here we had to wait for the LA to say No and with that letter we received our right to appeal letter. Which is what we did. There was a lot of lying going on with us too. I had previously visited all the local colleges, I had very frank conversation with them about my sons needs, all of them agreed they couldn’t meet his needs and informed the local authority that they couldn’t. With the appeal we also did a GDPR request to the LA, school and the NHS. The LA stuff was very interesting to say the least! The LA even sent an advocate to talk to my son (who is non verbal and has severe learning disabilities) the advocate wrote a very good report stating she felt the residential college was perfect for him and it was in his bests interest for him to go there. This report was ignored by the LA. They played all sorts of silly games and delay tactics like saying they couldn’t send his files as they didn’t have his permission etc. When they eventually gave in as they knew they could not win they conceded 2 weeks before the tribunal. At that point they were about to get in a lot of trouble from the tribunal as they’d not submitted any evidence at all. It almost cost our sanity and financially we were on our knees. We did have a solicitor throughout. We paid for that but your son should be entitled to legal aid in his own right if it comes to it.

[BeatriceH in reply to BenjiB]

Thanks again - it's such a relief to hear it's not just me! They all like to make parents feel like they're crazy and unreasonable and it takes its toll doesn't it. It's a horrible way to live but I'm glad things worked out for you.

I have also visited the local colleges (like a good girl, as I was told) and they've also said they can't meet (my version of) my son's needs and aspirations. But it's my word against the 'professionals' as to what his needs and aspirations are. And they swing the MCA around like a weapon, doing it at school without anyone's knowledge, manipulating my son to say what they want him to

Appreciate your support, cheers.

[BenjiB in reply to BeatriceH]

It’s just a nightmare as if parenting our children isn’t already hard enough. My son is 23, due to leave his residential college in July. I’ve found a lovely residential home, out of county. He’s been assessed and offered a place, and am now waiting to hear if the LA will fund it. It’s never ending!

[BenjiB]

To add there are som fabulous groups on Facebook. I got lots of help from them. There may be a welsh education one.

[oakvill in reply to BenjiB]

Would love some group names if anyone has any... we are in Berkshire.

[Iolo]

It really concerns me how often I hear and read that trained professionals assessments are not a fair reflection of people’s needs. I do not understand what that is about as I thought people entered into such careers to try to be enabling, not to further disable people. It is not like the funding for care or placements comes out of their own bank accounts or that they earn commission when saving the councils money! I find it staggering why people wish to down play vulnerable people’s needs and not want to do all they can to enable people to reach their potential, it’s short sighted if nothing else. Can I check if the local LD health team are involved to support his mental health? I would hope they can help. Sometimes it’s helpful to try to identify whether there is one professional who you find particularly helpful and see if they can help to navigate this unnecessarily challenging situation. Also I know people on this site have talked of the value of buying an independent social work assessment. Finally have you thought of an advocate for your son and/or a family advocate for you? I’m so sorry for you both facing such stress and strain.

[BeatriceH in reply to Iolo]

It's awful isn't it - I've said to them all that they're the ones dis-abling my son by simply enabling the horrible services-driven system. But they insist that they have my son's best interests in mind. I have been told that they don't want to 'open the floodgates'!!

He was referred to the psych team last May but so far, no one has actually done anything. The psych nurse seems to be on our side but is being blocked with his efforts to help by school's chaotic timetable, and by the fact that no one will tell him what the plan is post-school (he wants to advise on specific coping strategies related to my son's upcoming transition). It was this nurse who arranged an MDT meeting yesterday but didn't really contribute in the meeting so I ended up being cornered again by the others.

I will look into independent assessments, thank you. And thank you too for your support - it's so valuable.

[Zedy]

Have you asked Citizens Advise Beareu in your area .? Also research online alternative places in. Community Care service or. Other.

[BeatriceH in reply to Zedy]

I haven't but will check those out - thanks

[Zedy]

Good luck 😉

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[cautiouscandy]

Hi there,

this information maybe useful for you. My friend had an Autism specific college and residential placement in mind for her son when he was leaving school. Of course the Local Authority didn't want to fund that, it was also out of area. She went to a solicitor who sent a letter to the Local Authority, Social Services. The letter pointed out that if they did not fund this placement for him they were denying him some specific human rights. The placement was offered one week later. I think the solicitor either specialised in human rights or public law or perhaps both. That might be worth a try...

All the very best with everything.

[BeatriceH in reply to cautiouscandy]

Thanks so much - that is really useful to know! At the moment, no one will actually say 'no' to the placement, they're just dragging their heels But def worth a try

[Tiffin123]

Hello, just been reading through the chat on this subject - it’s such a difficult time when we try to make this transition into the adult world when there seems to be a whole new set of rules. I’m not sure if this will be suitable for your son, but my 22 year old recently completed a year with Project Search in Norwich. They help young people with learning disabilities/ autism etc with assisted internships and with looking for employment. I’ve checked their website and they do have a centre in Bristol and also Bath but nothing in Wales. Project Search was a very positive experience for us, despite being somewhat compromised by all the covid lockdowns/restrictions .Good luck with everything!! You are not alone!

[KBParent]

Project Search is one of a number of employment initiatives in and around Bristol. There are other supported internships too though all will require an EHCP. Might also look at We Work for Everyone - employment support in the area without need for social services. Good luck