Self Directed Support

My son is getting Self Directed Support.  Is this a good thing?  At the minute I've still not fully made my mind up whether this is a good thing or not. 


When Adam left school 2 years ago he had a place for 3 years at college on a development course and a supported (funded) voluntary postition in a cafe run by an organisation that gives training to adults with learning disabilities.  He also had one day a week at a day centre and when college was on holiday he went to the day centre an extra 3 days a week.  The funding for him to attend the day centre was around £17000 pa

He really liked the day centre.  He had the opportunity to try different activities, he was part of a walking group and they did some educational stuff like keeping yourself safe and relationships.  They could also target any learning specific to the service user if there was something in particular that needed addressing.

He also had the chance to meet girls! He is 19 and loves girls.  Being in the day centre allowed him to have a 'relationship' He had a couple of girlfriends while in there and was becoming quite the heartbreaker.

Anyway things change.  The budget cuts to education has meant that his 3 year course is now a 2 year course and finishes this year.  He has also been assessed for Self Directed Support (SDS) and has stopped attending the day centre.

First let me say we love his Social Worker.  She works very hard to maximise his opportunities and is always available, even if it is just a quick text to answer a query.  However, I don't feel that his SDS is quite right.  He currently gets support from 8.30am - 3.30pm and 6pm - 10.30pm on Friday and 12 - 5pm on a Saturday, he also gets extra support when the college is on holiday.  This support is shared with another young man that he already knows and this allows them to maximise their funding - The cost of this support is around £8,000pa

We didn't really have a choice in whether to take SDS or not. It was promoted in such a way that we didn't know we could keep things as they were or take a combination.  We also weren't given a choice of providers for the support.  It was just assumed that this is who we would use and the board approved it and paid money straight to the provider.  Some of this might be my fault as I didn't question enough, however, I didn't have much knowledge at this time and although I was given things to read none of them were from the Scottish Government and most were about the process rather than our opportunities.

Adam enjoys his support.  On a Friday they go to either the library or the gym and then to a club where the support organisation run a karaoke.  This is good  fun and everyone enjoys themselves either singing or dancing.  On the Friday evening there is a disco organised locally for adults with disablities (mainly learning disabilities).  There are around 200 people attend this from all over the west of Scotland and Adam loves it.  Beer/Girls what more does a 19 year old young man want!!

Saturdays are spent in the main ether bowling or pictures and here is my problem.  I feel that this is an easy shift for the support staff and I think it is more like befriending for a young person than support for two young adults. 

I would like the support on a saturday to give them an opportunity to try different activities or challenge what they like.  Neither of them have behavioural issues, Adam needs support to ensure that he is safe and his money is spent appropriately and his friend is non verbal.   I feel the team leader is not prepared to think outside the box to maximise their oppportunites.  Their activities cost around £30 per week on top of the cost already paid by the LA and while I don't mind paying - after all this is why he gets DLA - I would rather they did things that we can't do as a family. 

I am not sure what the answer to this is at the moment.  We have had a review where the team leader agreed to look at things but up to now nothing has changed.

We also have a small problem of when Adam finishes college.  He will have 3 extra days a week to fill and no extra money.  His social worker is currently looking at voluntary positions for him that do not have to be paid for.  However these may not materialise.  I am dreading the possibility that he may have to spend his days with me.  I love him dearly but he is a young adult and he hates spending any length of time in the house or with me.

This could also be a problem for other families where both parents work.  When your disabled child reaches 16 the Government says you should go out and find a job.  This has been the time that I have found it harder to continue working and this has culminated in me stopping working.  When your child is at school you know they are there from 9 - 3 every day.  When school finishes things are not as secure and there may be days that they are not getting picked up till 9,30 and may be dropped off at 2pm.  How are you supposed to keep working then.

I'm not sure what the answer is for Adam.  Maybe we should look at other providers but I'm not even sure if we are locked into a contact with his provider for a certain length of time.  Probably these are questions I need to be asking.