Tag Archives: independent living

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!

Harry Gets An Offer of a Residential Placement

I now know the meaning of a ‘red letter day’. On Monday we got an offer for Harry of a residential placement at our (and his) first choice college. I was unable to open the letter straightaway; instead I had to make myself a coffee in preparation. When I read the words, “I am pleased to be able to offer Harry a residential placement…” I felt tears spring to my eyes. This was what we had been waiting four weeks to hear.

Attached to the letter were a further four pages: one was a summary of their pre-assessment report. Another was a more detailed assessment of Harry’s numeracy and literacy both of which indicate that he is working at a Pre-Entry Level. The remaining pages give an outline of the programme of learning on offer and a provisional weekly timetable, both of which fill me with hope and delight that they will provide Harry with a fulfilling and meaningful time at college.

I realise that I am jumping the gun somewhat in setting so much store by this offer. And that I probably shouldn’t even be blogging about it. But I intended this blog to be ‘warts and all’. So, if, ultimately, Harry doesn’t get this place those who have read the blog will have a sense of what he has missed out on.

The offer letter makes it clear that funding approval is yet to be granted (and is something we will not receive confirmation of until May 2013) and mentions a fee banding of F. I managed to find out that that indicated annual fees of £42,000 which is an extraordinary amount of money. However, I have to remain optimistic that the Local Authority will approve funding, especially since there is no provision for Harry locally.

So, forgive me if I wax on about the offer but I find it interesting in that it is so specific. They have obviously spent the last four weeks working out an individual programme for Harry which is:

  • The development of Functional and Key skills, which will be integrated throughout his curriculum (his curriculum!)
  • A general programme of vocational education with access to external accreditation
  • An Independent Living Skills programme to enable him to achieve the maximum independence possible for post-college life (be still my beating heart…)
  • A Personal Development programme to encourage him to acquire the skills for citizenship and support in forming relationships with his peers (something which Harry desperately needs)
  • Teaching matched to his identified preferred learning style (verbal instruction in a practical setting)
  • Leisure activities which will include out of college trips, supported use of public transport to access local facilities and a wide range of sporting options and clubs, plus a full programme of College entertainment during evenings and weekends (sounds too good to be true doesn’t it?)

This last element is not perceived by LAs to be of importance. When applying for college places we have been advised not to mention extra-curricular activities as a reason for applying. But it is absolutely vital that our children can have access to a social life, especially during this formative years of late teens going into early twenties. When a neurotypical child goes to university one of the key reasons for going (whether parents like it or not) is to experience the social life of a student. Why shouldn’t our autistic children have the same opportunities?

The offer letter goes on to detail Harry’s support requirements as follows:

  • Specialist teaching and enabler for 28hrs/week (1:4)
  • Structured programme of residential learning – 3hrs of 1:1 equivalent
  • Social, creative and leisure activities – 1hr of 1:1 equivalent
  • Support with personal care and activities of daily living at approximately 1:7 making 7.85hrs of 1:1 equivalent per week
  • Medical Centre support 0.4hrs of 1:1 equivalent per week
  • Immediate access to counselling support 0.2hrs of 1:1 equivalent per week
  • Immediate intervention for emotional support 0.2hrs of 1:1 equivalent per week
  • Speech & language therapy 0.25hrs of 1:1 equivalent per week (this is the only area I have a slight quibble with, it doesn’t seem very much)
  • At the end of the first term the College Assessment Tutor will prepare and forward a Baseline Assessment Report
  • Guidance by the College Assessment Tutor to develop his Individual Learning Goals
  • A first year review meeting to discuss his Individual Learning Programme and progress
  • A three-weekly 1:1 Personal Tutorial to review his progress and support needs
  • A Transition Review meeting in the first or second term of his third year to plan his post-college opportunities

In summary the college will provide 13.5hrs of 1:1 teaching equivalent and 8.9hrs of 1:1 care and therapy equivalent.

Finally, the college attached what it refers to as a ‘pro-forma timetable’ showing that if he went, Harry would be doing, e.g. Breakfast Life Skills on a Friday morning from 8.15am till 10am, a Vocational Course leading towards Skills for Working Life with Speech and Language Therapy integrates on Monday afternoons and Community Access 1:3 on Friday afternoons.

I can’t tell you how happy that single page makes me. His days will be filled from 9am till 5pm with meaningful learning, extra-curricular activities he loves and opportunities for integration. At this very moment my cup is much more than half-full; it is overflowing. And I’m going to savour it for some time to come.

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…