Adult Social Care

[Lemur789]

We have a daughter with severe learning disabilities and autistic spectrum disorder. Since she has officially become an adult I am finding it difficult to access support and advice for young adults like her as she is lumped in with people up to retirement age; not students at college like her. Any suggestions?

[Hidden]

Hi

I'm sorry I can't help you but wanted to you to know I'm thinking of you and you are all in my thoughts and prayers . Love and hugs Lynne xxxx

[Lemur789 in reply to Hidden]

Thank you. Sorry for the late reply.

[Mary-intussuception]

Have you tried phoning the Scope helpline or sending an email? Don't know if / how they can help but should be able to point you in the right direction?

Is there a PHAB Club in your area?

You will have heard of Contact (for families of 19 to 25 year olds) ? Does she have an EHC plan ? (Just Googled & found out about this )

[Lemur789 in reply to Mary-intussuception]

Yes, my daughter does have an EHC plan. Thank you for suggestions of Scope and Contact; I will try them.

[Lou1054]

You mention college, is there a student welfare officer you could contact x

[Lemur789 in reply to Lou1054]

I am in touch with the safeguarding team as she has recently developed a psychotic episode, which needed treatment for the first time. The college is mainstream and they deal with security for staff and pupils as well as welfare of both. I will ask if they have any suggestions.

[pelvicpain123 in reply to Lemur789]

The college will also have a Learning Support Department. When your daughter choose the college she attend the SEN team in your borough should have sent a copy of the EHC plan so that they were aware of her needs. The plan should also be reviewed regularly. I would also contact the borough's SEN team as they can liase with the college (and make sure that she is treated fairly and offered any support she needs). I recommended SENDIASS in a earlier message - they can help you liase with them so that you feel like someone is on your side and putting your best interests at heart.

[Lemur789 in reply to pelvicpain123]

I am in touch with the Learning support dept. They have been very good, arranging a helper for all lessons and escort to break and lunch. There is also a quiet room. As for the EHC plan; Cornwall is notorious for its late completion and return of updates. Her last plan was returned to us in July when the meeting for the decisions on what it should include had taken place the previous September! I do need to chase that up as we have not had a meeting this year; possibly because of her recent diagnosis of psychosis causing day to day problems. I will mention it next week ( after half term). I will also get in touch with SENDIASS. Thank you

[pelvicpain123 in reply to Lemur789]

Glad that the College have been supportive so far. Cornwall SEN team have a legal duty to ensure that the EHC is completed and updated so don't be afraid to seek legal advice if you do not think that they are doing what they should/are late in doing what they should. SENDIASS will be able to help you if you want to challenge the Council.

[desquinn Partner Volunteer FMAUK Trustee]

There may be other forums on Hu that may have more experience in this area. With having a look and ask the question there.

[Lemur789 in reply to desquinn]

Thank you

[FRreedman]

Does your local council not have a young persons assistance line or officer? What about her college or university, surely they have someone who can help her?

[Lemur789 in reply to FRreedman]

Thanks for your suggestions. I will try them next week.

[Hidden]

My son is 21 today and he is also severely autistic and the changes over from child to adult services was an eye opener. My son has volunteering support, escorted to an enable club, and two other days of support. I find it hard with fibro and other conditions at times so for me it's a godsend but he thrives outside the house as he is a great lad who needs other company than mine. That was long winded but get in touch with adult services and once you have their attention ask for all the help your daughter needs. Good luck. Wish me luck too. About to embark on a day of celebrations he is my middle child but I can't believe my baby is a fully fledged adult!!! Plenty of pain killers and my best walking shoes to look out before the troops wake up x

[Lemur789]

I hope you all have a lovely time. I hope the pain killers are strong enough.

[pelvicpain123]

Hi Lemur789. I think that many families with young people and adults with SEN would share your experiences.

Your local council website should have some information that should support you. Unfortunately, it really depends on which borough you live in and how easy the website is to navigate.

If you are happy to share, please private message me the borough you live in and I will have a look for you. I am a Personal Adviser working in a central London borough which is well funded but not all boroughs are the same.

Connexions (if you have it in your borough, Scope, an organisation called SENDIASS supports parents and challenges local councils who are not doing all they should do).

Each council should have an adult social worker who should be able to offer support for you and your daughter.

Dont give up. Help is out there x

[Lemur789 in reply to pelvicpain123]

We live in Cornwall which is a unitary Council. I know Connexions used to exist down here. Scope have certainly reduced their contributions as they used to fund a parents group for disabled children which we now have to fund ourselves and they are not able to provide their expertise for general meetings to tell us what the Council should provide. Two years before our daughter became an adult Cornwall made all the Transistion Social Service workers redundant. We had an awful battle persuading them that they were breaking the law because there was no one to advise us and the young people as far as Transistion to adulthood was concerned!

[pelvicpain123 in reply to Lemur789]

Hi Lemur789,

SENDIASS are available in Cornwall ; opening hours Monday–Friday 10am–3pm ... call 01736 751921.

I have also found a link to SEN in Cornwall ... cornwall.gov.uk/education-a...

Additionally, there is; disabilitycornwall.org.uk - but I have never used them (I am in London) so cant recommend them, but you could see if they are able to support you.

GOOD LUCK.

[Lemur789 in reply to pelvicpain123]

Thank you for your support and help.

[Paddy1970]

Have you got power of attorney for your daughters health / finance? That's one practical consideration. I would suggest contacting one of the big charities, like Scope for e.g to get their advice. Adult social care is hanging by a thread, as I am sure you know, but they have certain legal obligations and duty of care.

[Lemur789 in reply to Paddy1970]

i am her appointee for her finance as when she became an adult I was visited by DWP. The doctors who have known us since she was a baby have never asked for me to sign anything. It is quite obvious that she could not really make any decisions on her health, as I need to give the doctors more details etc beyond things like ‘My ear hurts!’ and finance apart from buying lunch and small gifts, drinks and snacks.

Certainly We will need to do a trust fund for her for when she does move into care and in time for her to inherit any money/assets. We need to get in touch with someone like Mencap to sort that out. Our wills are sorted.

As for Adult Social Care apparently they have lost 60% availability of respite care in the last two years in this area; so they can’t offer me anything other than basic respite. This does cause problems in the Summer Holidays as if she gets too little stimulation for too long she retreats into fantasy world too much which seems to have contributed to her recent psychotic episode for which I had to take her to the doctor. Now she is on anti psychotic medication and missing some of college while she returns to a more stable mood. We should be able to get her better and back to college as she seems to be improving but it seems that central government has not heard of vicious circles .