Category Archives: Independent Living

There Can Be Only One

Monday 16th September 2013. C-Day. College Day. We had had the whole weekend to pack but there were still some last-minute additions to the bags: a 4″ figure of David Tennant as Dr Who, an empty bubble bath container in the shape of The Stig from Top Gear, Harry’s nightlight. We were all quiet and a little subdued. Grandma told me that she’d had a chat with him that morning and Harry didn’t really understand what was happening and that just made everything worse.

We set off at 8am, dropping Harry’s sister at school on the way. I had to remind her to say goodbye to her brother because she wouldn’t be seeing him for five weeks. Typical teenagers’ forgetfulness. And then it was just the three of us. We left Yorkshire in glorious sunshine, encountering showers and then more sunshine as we neared college. A perfect metaphor for the day: sunshine & showers; bitter-sweet.

A knot the size of a grapefruit formed in my stomach (and it wasn’t the bacon sandwich eaten half-heartedly at the motorway service station). Time to act: put on a smile, adopt positive body-language and come up with cheery chat. Having registered our arrival we joined the human conveyor-belt of interviews with various members of staff.

Travel

The travel co-ordinator asked about our plans for half-terms and holidays. “It is college policy to promote the independence of students and wherever possible we encourage students to make use of the transport services provided by us.” Harry could travel home by coach or train with groups of other students accompanied by staff as far as Manchester. We decided this was an aspect of independent travel training we would like to work towards but felt that October was too soon and elected to go and collect him instead. We got the impression this was a rarity. Not for the first time I felt like I was being an over-protective parent. I made a mental note to download the application forms for a Disabled Persons Railcard.

Health

Next it was on to the college nurse. All her questions were directed at Harry but he was unable to answer the majority of them. He was able to acknowledge that his address was correct but not his date of birth. And he often forgets how old he is. We handed over Harry’s proof of NHS prescription charge exemption (a copy of his HC2 Certificate for full help with health costs) and a form agreeing to him being given an anaesthetic if necessary. We explained that Harry’s ear infection had recurred over the weekend (great timing) and that he would need help administering the prescription spray. We tried to remember the numerous minor operations he had as a child. I gave her the Occupational Therapy report produced after Harry had left school and far too late to be included in the LDA.

Harry went off with the medical staff to be weighed and measured: 5′ 10″, 9st 2lbs, BP 124/77. No medications, no allergies, no dietary conditions. “An easy one!”

Education

Our next stop was with the curriculum co-ordinator. He took Harry’s photo (not a good one, H refusing to look at the camera directly) and spent more time discussing how student photos might be used in promotional material than in Harry’s timetable. He hadn’t received the form which showed that Harry’s preference was for vocational modules in Hospitality and Retail and so had produced a timetable which took in H&R but also aspects of Land Based Studies (Practical Skills and Horticulture), Catering Studies and Arts, Media & Business Studies. I panicked a bit because Harry has an aversion to getting dirty and doesn’t like animals other than our own pets. But it’s only for a couple of weeks until Harry’s skills and preferences can be determined. And ultimately one area of study has to be picked because “study programmes are being introduced by the DfE from September 2013. The programmes will form part of the curriculum offer. The aim is to maximise the potential of young people to progress in education or employment.” (College literature)

Social Life

He double-checked which sports and social activities Harry wanted to include in his timetable: darts, football (H not sure), gym (not sure), horseriding (limited availability), swimming (H isn’t keen but dad thought it was a good idea and had packed his swimming trunks). From the list available I can imagine he would love Out & About Xtra Club (Monday 5.15-7.15pm), Music Club (Tuesday 5.15-6.15pm), Drama & Karaoke Club (Wednesday 5.30-6.30pm), Disco (Wednesday & Saturday) and Walking Club (every other Sunday 2-4pm). But will he be made aware that they are available?

Speech and Language Therapy

The therapist explained that at one time she would have seen every college student. Due to cutbacks she can now see only those students who have SaLT indicated in their assessments. She didn’t have a report from Harry’s SaLT at school because they hadn’t produced one. He had only been getting input during his last year at school but I am glad that I persevered in pushing for it to resume since it will undoubtedly help him. I promised to send her his last report from 2009, along with a report from his class teachers in 2012 so that she would at least have something.

Finance

Here we handed over Harry’s medical card and a form allowing him to be registered with the college doctor. They needed his Unique Learner/Pupil Number which I found on one of his SEN Review reports. And his NI number. They needed to know which benefits the student receives. And if your child is taking their own TV to college they need a TV licence. We decided it would be better for H to watch TV in the communal lounge: more chance of socialising that way.

How much personal allowance should Harry be given every week? How long is a piece of string? Harry has a wallet which I load up with cash when he gets taken out on trips but otherwise he’s like the Queen: he doesn’t need money. The finance officer mentioned that he might like to buy a soft drink, sweets or a magazine. I’d rather he didn’t. I explained that Harry has to use prescription toothpaste high in fluoride in order to control the extra plaque that builds up because he is unable to brush his teeth thoroughly. As for magazines, he loves his dad’s old Empire mags but he can’t read them, he just looks at the pictures picking out familiar characters/actors. So, for Harry to spend his allowance on magazines would be a bit of a waste. Wouldn’t it?

The highlight of college weekends is the trips out: musicals in Manchester, Birmingham, Wolverhampton; castles; museums; football matches; zoos; train trips. There is a lot to choose from. If asked, Harry would probably say ‘yes’ to everything. He would love the theatre trips but hate the shopping trips and museums. I circled the trips I thought Harry would enjoy between now and the Christmas holidays and the cost came to about £350. Looks like we’ll be topping up the allowance pot before too long.

However, I was a little worried by the talk of “rounding up” students to go on undersubscribed trips and I’ll be checking the statement that comes through from college with this in mind. (Controlling again. Can’t help it).

We were exhausted, it was 1.45pm and long past Harry’s (and our) lunchtime. We took ourselves off to one of the on-site cafes and ate lunch in quiet contemplation.

Harry’s Room

After lunch it was time to find his room and unpack. Deep breath. Staff seemed unsure about which was Harry’s room. On closer inspection each door had a name label on in small type. I’d like to have seen a photograph, at least 4″ x 6″, especially for students who can’t read.

The room was small, dark and sparsely furnished. 2 single beds, 2 sinks, 2 wardrobes, 2 bedside tables. It seemed that Harry would be sharing a room. As he was first to arrive he had the pick of the beds. We picked the one nearest the window as it seemed a bit brighter. We put up the posters we had brought and they cheered his half of the room up: Skyfall, Marvel comic covers and Spiderman. We struggled to plug in the extension lead for the bedside lamp. There would have been no room for a TV and none for his digital photo frame. I plugged in his nightlight. A narrow shelf for toiletries. I unwrapped a new bottle of mouthwash and encouraged him to use it. The Marvel comic duvet set stayed in its packaging and was put into the wardrobe but now I wish I had taken the time to put it on. Harry helped to unpack his clothes and with space at a premium, decided to put his football kit on top of the wardrobe. Let’s hope it doesn’t stay there for the rest of term.

I wanted to check that the Care Plan, which I had taken a great deal of time over, had made its way to the staff. Again, it was not to hand and I worried that they would not have read that Harry needs to be shown where the toilets are, that he can’t tell the time or use a phone without assistance. My lip wobbled for the first time.

There was nothing left for us to do. I hugged him and said it was time for mum and dad to go.

Don’t want you to go.

It won’t be long. We’ll see you soon.

Don’t want you to go.

Five weeks and then it’s half-term.

Don’t want you to go.

Oh Harry, it’ll go really quickly, you’ll see.

Don’t want you to go.

I know. But you’ll make lots of new friends and learn lots of new skills.

Don’t want you to go.

I couldn’t think what else to say to him. My eyes were filling with tears and I was determined not to cry in front of him.

Well mum and dad can’t stay here, there’s not enough room.

Don’t want you to go.

I know. I know. But we’ve got to go.

Don’t want you to go.

We put on our coats and picked up the empty bags. One of the other student’s parents were also on the verge of leaving and I saw his mum wiping her eyes. He had settled down to watch TV in the lounge and we encouraged Harry to do the same. A last reminder to the staff that Harry hadn’t worked out where the toilet was in relation to his room. Or which was his room. (Get those photographs up). A last goodbye and we walked away.

Only when we were safely back in the car could we let out all the pent-up emotion. We felt wretched and thoroughly miserable. The drive home was punctuated by tears and the occasional grasp of one another’s hands in supposed reassurance.

There Can Be Only One… First Day at College. The rest have to get easier.

A Red Letter Day

16th May 2013: our and Harry’s ‘Red Letter Day’.

After weeks of waiting expectantly for THE letter to drop onto our doormat, its eventual arrival almost went unnoticed. Half a dozen letters came on that day and I scanned them all quickly to see if any of them was the letter telling us what Harry’s future might hold. Bills, junk mail and insignificant-looking brown envelopes. Another day of waiting loomed.

It was eleven o’clock: time for a coffee. As I sipped I began to open the envelopes and browse their contents. The insignificant brown envelope contained… a letter from North Yorkshire County Council. OMG! (as my teenage daughter would say). This was it. You know how sometimes you have to read things several times before their meaning sinks in? That was me.  But I picked out the key sentences: “Pleased to inform you … able to approve funding…” The establishment name was correct, the placement type was correct. “Placement length: Three Year Programme – Commencing September 2013 and ending July 2016.” Correct. Much to my amazement the council seemed to have approved three years of funding when I had been advised we were likely only to get two. “Funding Approval: September 2013 to July 2014.” This last bit was worrying. Did this mean we had to reapply for funding on an annual basis? A couple of phonecalls later reassured me that this was standard practice and that the key phrase was “Three Year Programme”.

And then the relief hit me. And the tears came. This was what we had worked so hard for. I had been prepared to go to appeal to get funding for the full three years but Harry had been given it anyway. Instead, we can relax and spend the summer preparing Harry for the next stage of his life: college.

Now the countdown is really on.

192

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.

Applying for an Adult Passport When You Have a Learning Disability

Oh joy! Harry’s passport has expired. The passport he had held since the age of 13 will no longer do and he has to have his first adult passport.

I filled in the new passport details online at the Home Office’s Identity & Passport Service website. Within a few days the pre-printed form had arrived ready for Harry to sign and return. Ah… I spy a problem. Harry’s literacy skills are very limited. If pushed he can read basic C-V-C (Consonant-Vowel-Consanant) words like Mum, Dad, Cat, Dog, etc. But he can’t read a form. And he can’t sign his name. He can make an attempt at a signature which usually ends up looking something like ‘H-a-n-n-g’ but it isn’t consistent. And anyway, he shouldn’t be signing his name to a form he can’t read (a sticking point which I have had to argue with banks, building societies and even our GP surgery quite recently).

So I read through the accompanying ‘A guide to filling in your passport application form’ and on page 12 found the relevant note:

If you cannot sign the application form

If you have … a disabilty that means you … cannot sign the application form, you should call the Passport Adviceline on 0300 222 0000.

Which I duly did. After negotiating the automated menu options I eventually spoke to a young man who had to put me on hold whilst he conferred with his supervisor. It transpired that if someone has a learning disability then the person filling in the form on their behalf has to:

  • Enclose a letter stating that the applicant is unable to sign because s/he has a learning disability.
  • At Section 8 in the application form called ‘More Information’ state “See accompanying letter. Applicant has a learning disability.”
  • At Section 9, the ‘Declaration’, sign the form on behalf of the applicant, state your name and relationship to the applicant.

Thankfully relatively straightforward. Now to get new passport photographs taken – less straightforward since this will involve: firstly, a trip to the barber’s and secondly, a trip to the photo-booth.

Trips to the barber’s have become less traumatic over the years. There was a time when Harry couldn’t bear the noise of the scissors snip-snip-snipping around his ears, let alone the electric trimmers buzzing. He has obviously become less sensitive to these particular sounds.

Then there was the encounter with the barber who said Harry reminded her of the kid in ‘The Sixth Sense’, Hayley Joel Osment: “I see dead people…” Needless to say, we haven’t been back there since!

The new barber is great. I have to be there to tell her what Harry wants doing with his hair and to remind him to look at himself in the mirror and sit up straight. He is still slightly anxious about the experience: as soon as she’s finished, Harry leaps out of the chair and whips off the black protective gown whilst I pay.

A little more off the top, Sir?

Looking spruce it is time for the photographs. The barber has given us some useful information. A nearby electrical shop does passport photos. Not in a booth; they are taken by a man with a digital camera and I realise this will work much better for Harry. I had wondered how I was going to get him to look straight ahead and not smile. After years of begging Harry to smile for the camera, now I was going to be expressly telling him not to!

The man in the shop was very patient whilst I told Harry repeatedly not to smile and to “look at the man with the camera”. In the end I had to stand behind the photographer to encourage Harry to look straight ahead, not off to the side at me and his sister! But it worked. After three or four attempts we had a photograph that the Passport Office would accept.

And Harry will soon have his first 10-year passport, another step on the road to adulthood.

Don’t smile!

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…