Tag Archives: Disability Living Allowance (DLA)

If You Don’t Ask, You Don’t Get

It’s been a while since my last post… I hope you’ve all had a good summer break. When I have a bit more time (and the photos) I’ll let you know how Harry got on in respite care.

This is just a quick post to remind you that, “If you don’t ask, you don’t get.” I’ve used this old adage numeorus times when advising others but put it to effect this morning on Harry’s behalf.

Just before the summer break a representative of Action For Children told me about an Independence Support group which runs every Tuesday afternoon in the town where Harry attends school. It sounded ideal: a tea-time group attended by young people whom Harry would know and who are given the opportunity – with support – to budget for, plan menus, shop for, and prepare their own meals. I was keen for Harry to get a place and the representative promised to contact Harry’s Transitions Social Care Co-Ordinator (I know, I know).

Today I received written confirmation that Harry had been offered a place in the group. My delight was tinged with trepidation: in the past Harry has had to fund his own transport from social activities. However, in this instance I felt this was much more than a social group because of the focus on gaining independence skills. So, before accepting the place, I phoned the TSCC and queried whether they would provide transport. She asked whether Harry was in receipt of DLA (he is) and stated that this was meant to fund such transport. I made it clear that I was not happy about this, especially because of the value attached to the acquisition of independence skills and reminded her that it would only be for a year, during term-time. She said that this was the message they were told to put across to people but promised to ‘have a word’ with her manager…

Less than an hour later she phoned back, said that she had spoken to her manager and stated that, in view of the distance Harry lives from the group they would be prepared to fund his transport in this instance. I was stunned! I had just been considering whether to get a taxi to collect Harry and bring him home…

So, my advice is: always ask, sometimes you get!

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Towards A Social Life and Independent Living

We had a visit from a worker from action for children today. Harry had been referred to them via Adult Services who are responsible for funding some of their activities.

I hadn’t heard of action for children before and when I googled the website and found that the charity supported neglected and vulnerable children & young people I was a little perturbed. How could they help Harry?

The lady who came brought two thick A4 folders stuffed with photographs of young people enjoying themselves on trips. Harry was a little reluctant to tear himself away from his Sherlock Holmes DVD to come downstairs to meet someone new. However, the photos were a great ice-breaker and Harry recognised lots of people from school.

She explained that the service is aimed at young people aged 18-25 with learning disabilities and those on the autistic spectrum. I was particularly interested in their Independence Support service which aims to help young people to use public transport, find jobs, access further education, develop independence skills. All of which sound perfect for Harry.

They also run an after-school Tea Time Group on Tuesday evenings which encourages young people to prepare and cook a meal for themselves and others. Those who attend are involved in choosing healthy options for menu ideas, budgeting and shopping. This is the sort of meaningful activity that I keep banging on about. Having the opportunity to be fully involved in an activity from start to finish on a regular basis is a really useful life skill.

My worry is that Adult Services will not agree to fund Harry’s transport back home, even though he will not be making use of his school taxi on that night. This is what happened with the School Youth Club and we ended up paying £30 for a taxi to bring Harry home at the end of the session. That’s a substantial amount of money on a monthly basis: almost half of his Disability Living Allowance.

Independence Support also extends to helping young people find accommodation. The project has its own supported flats and young people living in the development are supported up to the age of 26 to learn all aspects of independent living. At 26 they are supported to find other accommodation in the community, having gained the skills required to live independently with limited or no support at all. What a thought!

Harry is a little way off that but it is good to know that there are organisations out there which will be able to help him when he gets to that stage. Of course, such organisations will only be around provided their funding isn’t cut any more than it already has been. This particular branch has seen its workforce halved in recent years.

In the meantime the charity also provides a Summer Activity Scheme which involves taking groups of young people out and about. They particularly like to bring together those who have been away at residential colleges and encouraging them to socialise together. This seems like a particularly good idea since many young people will have got to know one another from the age of 11 upwards and it provides an excellent opportunity to catch up.

By the end of the meeting I was feeling very encouraged. The activities and support offered seem to be appropriate for Harry and I could see how he would gain skills, improve his confidence and have opportunities to make new friends.

And now, there are a few more forms to fill in…

Accessing & Assessing Social Activities for Autistic Adults

Today I made the difficult decision to cancel one of Harry’s two weekly social activities.

For the last few months Harry has been going to his school’s Youth Club which takes place on a weekday evening from 6pm till 8pm. His attendance was suggested by a member of the Adult Services team who attended Harry’s Statement of SEN review in January and we were very grateful for the opportunity to extend Harry’s social activities. (Up until that point I didn’t even know that school ran a youth club even though he’s been attending this school for 18mths).

Perhaps our distance from school meant teachers thought we wouldn’t be interested. His school is a 45 minute drive from where we live so, in order to attend, various other support processes would have to be set up. For instance it would be pointless in Harry going if it meant that we would have to take him and bring him back. So, Adult Services suggested that they could arrange for a worker from MENCAP to collect Harry at the end of the school day, walk with him to the nearby community centre where Harry could access their tea-time service, and then accompany him back to school for the start of Youth Club.

In order to avoid the hour & a half round trip to collect Harry at the end of Youth Club we decided to ask his school taxi company to provide that service – at an additional cost to us of £30 a time. When I discussed the possibility of Adult Services covering the cost within his ‘funding package’ I was told that Harry was in receipt of Disability Living Allowance (DLA) and that this was what DLA was intended to cover. So be it! On top of that we also had to find the cost of his tea at the community centre, a further £2.60. Again, that seemed reasonable enough if it meant that Harry was getting the chance to interact with his peers, and perhaps even making a few friends.

Harry started going to Youth Club a few months ago. But I soon heard from people who saw him at the tea time service that he looked a bit lost, sat on his own and didn’t join in with activities. And, although Harry isn’t the most talkative of people, it seemed to us that all he really seemed to do at Youth Club was watch films. Admittedly, this is one of his favourite activities but it didn’t seem to us to be a particularly ‘social’ activity and we expressed doubts at to the value of his attendance.

Last week those attending Youth Club took advantage of the warm weather and walked to a local pond where they fed the ducks. This made a nice change from sitting indoors watching films but at a cost of £32.60 a week we felt it was time to acknowledge that it wasn’t making the best use of Harry’s DLA.

So, today I called Adult Services, explained the situation and asked them to cancel the support work provided by MENCAP. They were very understanding and told me that, in the meantime, they had been in touch with Action For Children to see whether they could offer any activities that Harry could access.

Until then, Harry is back down to one social activity a week…