Mr Cellophane

So, we're having problems with M's education and social care again. Nothing new there; it's been happening pretty much all her life. Except that she's now an adult and we're running into the brick wall that is adult social care, where you only count if you're actually currently suicidal (and not always then).

Back in the summer, after she had been admitted to hospital due to an attempt on her own life (which put paid to the two GCSE's she was due to sit), we contacted our local authority requesting an adult social care/mental health assessment, as we didn't feel we could keep her safe. When she turned 18, we were told "don't bother applying for a social care assessment, she won't meet the threshold." Reading up on it since, this seems a bit contrary to the Care Act, which says that local authorities should be proactive in offering assessments to people on the autistic spectrum, but we didn't question it, assuming that these were professionals who knew what they were talking about.

She was given a mental health assessment, carried out by a very pleasant and empathetic person whose train of thought was, sadly, interrupted by the realisation that she would have to go and move her car around the hospital car park mid- appointment, due to the Trust not providing all-shift parking for its own staff. She was sympathetic, but admitted M was unlikely to get much help, given that she was no longer at immediate risk of harm to herself or others (on the day of the appointment, at least). As with the RAID team in the hospital, she was able to offer useful phone numbers (no use at all for an autistic person who would no more phone a helpline than break the land speed record), referrals for counselling (4-6 month waiting lists) and a referral for a carers' assessment for my partner, her primary carer (we're still waiting on that, too - we anticipate more helpline numbers and offers of coffee mornings). 

As to a social care assessment, nothing. "We should really be talking to her rather than you, as she's over eighteen." Well, yes, but she won't talk to a stranger, especially over the phone, so she won't seek help herself even when she needs it. So good luck with that...

And so we tried to get her back into  some kind of routine. Her anti-depressants (which she'd been on for several years) were reviewed and amended and we tried to get her back on an even keel. The end of the academic year was fraught, although she managed to complete enough work to gain her Level 1 BTEC course, in preparation for the L2 Art & Design course she had been wanting to study for several years.  

Then we had a letter from Transport for Greater Manchester regarding the renewal of her travel pass. We duly filled in the application and returned it, only to have it refused on the grounds that "autism is not a learning disability" so she no longer qualified for it. I phoned the local authority and was told that this was because she was now an adult, and no longer came under Children's Services. We approached TfGM, who helpfully suggested applying on the grounds of having been refused a driving licence (although, to be fair, she would probably have qualified under the mental health criteria as well) and this was granted just before the Autumn Term began. With this pass she only qualified for free travel after 9.30am, a problem if her timetable included 9am starts, but better than nothing. As it turns out, we'd been wrongly informed; her EHC Plan means she is still entitled to the free travel she has had for the rest of her post-16 education, so we've now reapplied for the pass she should have had at the start of term.

In the meantime, I had taken some advice and was advised that her EHC Plan had some notable gaps in provision on the non-educational care needs and since her mental health had deteriorated sharply since the Plan was implemented in October 2016, we were advised to request an emergency statutory annual review. I wrote to the local authority on 2 September to formally request this.

Back at college enrolment, she discovered that she would not be allowed to sign up for the L2 course as she did not have English GCSE (the one she missed due to being an in-patient, hooked up to a drip) and was put on a L1 Art & Design course. Then she was told that the single Art & Design course was not running due to low numbers and that she would be doing a mixture of art, media and other disciplines. Having been put on a different L1 course last year, due to the Art & Design not running, she now found herself studying another course she didn't want to do, at a lower level than she thought she would be studying at. Her timetable didn't arrive before the beginning of term and rooms changed from day to day. Can anyone see why this might unsettle someone on the spectrum?

As a result, her anxiety went through the roof again and and she was pretty difficult to deal with, swearing at staff and spending half an hour hanging around the doorway trying to get into class (thresholds have always been an issue for her, but with careful management this can be overcome). Eventually, we were called in to a meeting, where it was proposed she should sign a behaviour contract; she declined to do so with 4 adults and her parents all sat around the table looking at her, so she was given some time to go away and think about it. 

As with most teenagers tasked with decision-making, she procrastinated. Last Monday she got a letter fro college stating that as she had not responded they would be starting withdrawal. This resulted in a frantic phone call to me at work (her carer had rashly though he could take half an hour off to go food shopping without incident) with M in floods of tears. I contacted the college straight away to see if there was any way to avoid this. I was assured someone would contact us. No-one did, so the next day, my partner contacted the college and was assured that someone would get back to him by the end of the day. That was a week ago, and despite us chasing twice since then, we have had no contact from anyone.

Similarly, the local authority has not contacted us regarding her annual review. No reply, not even an acknowledgement of our request. I worked for this local authority for 17 years and during my time there we had strictly-enforced service standards regarding response times to the public. 3 weeks' silence, despite the intervention of IASS (Parent Partnership as was) and a local councillor, was not part of the service standard then. Budget cuts, staff shortages and increased workloads notwithstanding, failing to even acknowledge a request for a statutory procedure is pretty poor by any standards.

We are beginning to think we are invisible, hence the title of this post. A vulnerable young person, at risk of self-harm has been pretty much abandoned, and her parents are bearing the brunt of her frustration. She is, as everyone keeps pointing out, an adult. We can't keep her locked in the house, but our hearts are in our mouths every time she announces she's "going out". It seems the parents of adults with autism are fine for fulfilling the state's responsibility for care (until the point where we become too decrepit to cope) but we don't warrant a reply to our very polite (for now) emails asking for help.

You'll be pleased to learn though, that the local authority's self-assessment of its Autism Strategy is all "Green". So that's OK.

Let's not let dead cats decide this election.

The rest of the Tory election campaign will be headed up by Lynton Crosby - a very unpleasant, unelected Australian 'strategist' with some unanswered questions about his tax arrangements, who delights in using 'dead cat' tactics wherever he can and is very effective at making nasty and incompetent people (Cameron, anyone?) look good. 

Please don't be fooled - May will not deliver a good (or possibly any) Brexit deal but she will continue to hammer the poor, the disabled and anyone other than the wealthy, despite all her faux concern for "ordinary hardworking people". And the NHS will continue to be run into the ground to soften us up for a US-style insurance system (look up how many Tory politicians have a financial interest in private healthcare companies if you don't believe me). 

She is a weak PM (and was a rubbish Home Sec if you look back at her record) who crumbles and then hides at the first sign of adversity. And if Brexit is what you're worried about, look at her negotiating team - the dilettante Boris Johnson, the security risk Liam Fox and David Davis, who really doesn't seem to know what he's doing so far. Angela Merkel has already given up on us, seeing the UK as Trump's ally! If we have to have Brexit (and I voted Remain, so I'm less than happy about it) then we at least need a decent settlement, and we won't get that with this bunch. 

I'm old enough to remember when Tory governments had Big Beasts - you may have disagreed with them and not liked them but at least there was a level of competence. Instead we have people like First Strike Fallon, who can barely control a tv interview, let alone our national security. 

And then there is what they're not telling us. There should have been an announcement on the state pension age due out before the election, but they're holding it back until afterwards - from which we can probably deduce that it's going to be bad news for us and we'll all have to work even longer than the current 66/67/68. 

So yes, you may not like Corbyn (although it's funny how many people have changed their mind now they've seen more of him in action) but really - does the Conservative Party really strike you as Strong and Stable after the last few weeks? Compare that with the calm response Corbyn has shown over two years of vilification from a hostile press (and large chunks of the PLP). If there's one thing he doesn't do, it's panic when things go pear-shaped. Unlike May. 

And before anyone starts with that "magic money tree" bollocks, there is no Magic Money Tree; what there is is a costed manifesto - and that's something else that's missing from the Conservatives. 

So if you live in a marginal, get out and vote - preferably for Labour, but tactically if that works better where you are. The collapse of the UKIP and LibDem vote means this is the most 2-party fight in a generation, but there are some marginal Tory seats that can be overturned - in some cases by a few hundred votes. And if you live in a safe seat, vote to keep the vote share high (and start campaigning for voting reform!) 

If you're young, follow up on that phenomenal registration surge and actually turn up on the day. 

If you're older, consider what old age and frailty will be like with no NHS, and vote for a party that won't allow it to be taken away from us. 

If you're poor, unemployed, disabled vote to stop being demonised by your own government. 

If you're not poor, unemployed, disabled have a bit of compassion for your fellow citizens and vote to stop them being demonised by your government. 

If you have children, vote for a party that won't starve schools of funding to levels not seen in a generation while reintroducing unjustified and un-evidenced educational segregation through grammar schools. 

So in conclusion, vote. Obviously, I'd like you to vote Labour, but in reality vote for anyone who can get rid of this shower of unpleasant incompetents. And remember, what you see from them over the rest of the campaign will be Crosby, not May.

A year's unpaid leave, you say? How generous!

Twenty one years ago, my partner and I both worked in the public sector, in modest but secure jobs. Our parents were enjoying well-earned retirements and were, in the main, fit and healthy.

Nineteen years ago, our first child was born with a rare neurological condition which meant that much of her young life was taken up with medical appointments with a range of medical professionals. After 6 month's maternity leave (the maximum I was allowed or could afford), I went back to work full time, and my partner and I managed these appointments between us, thanks in part to decent terms and conditions (good annual leave entitlement and flexi time). Our daughter had a place at a council-run SureStart Centre, with exemplary support from qualified, experienced childcare workers.

From the day she started school, there were clearly problems with her behaviour and by Year 1 she already had a statement of Special Educational Needs and at one point had 200% 1:1 support in class. At 9, she was additionally diagnosed with autism, which helped inasmuch as school staff at last knew what they were dealing with, but didn't make it any easier to manage. We were no strangers to exclusions, and each of those meant one of us taking time off from work. We will be forever grateful to those managers who allowed us to work from home at short notice and even, on some occasions, allowed us to bring her to work with us!

In 2007, my professional life took a hit when the project I had been working on with the council was put out to national contract, and I was TUPE'd to the private sector (thanks, New Labour). Now, I was working in a culture where I dreaded having to ask for time off, for fear of it being seen as a sign of weakness. Much of the "please come and take her home" requests then fell to my partner, with such frequency that he came to dread the school's number coming up on his phone. 

The following year, my daughter suffered sudden and unexpected sight loss in one eye and needed emergency surgery over in Liverpool and at least a week's recovery time. For an 10 year old autistic child, who needed to remain still and calm during her recovery, I was given 3 days' compassionate leave. No "take what you need and we'll sort it out on your return" but the maximum (grudging) allowance with an instruction to work at home for the rest of the time. Perhaps unsurprisingly, this decision was made with by a male manager with no children....

A year later, I was offered a voluntary severance package, which I accepted with almost indecent haste. My daughter was about to transfer to high school, and this gave me the opportunity to take a year out (as I thought) to get her settled in. My partner carried on working full time, and by living carefully, I made the severance money (about a year's salary) last a year and a half. At that point, we applied for DLA. Although she would probably have been entitled to it for some years, we both felt that we had been earning reasonable salaries and that we could absorb the 'additional costs of disability' that DLA covered. (We were earning substantially less than David Cameron, who did claim DLA for his son, but let's not go there).

We battled on. My daughter's behaviour continued to challenge and became more erratic as she entered the hormonally-challenging teenage years, resulting in more exclusions and eventually a spectacular crash out of mainstream schooling and a hellish (for both of us) 6 month spell at home while the local authority tried to find a place at the over-subscribed special school. My 'year out' didn't look like coming to an end any time soon, as although she eventually did get back into school (it took Sir Gerald Kaufman's intervention to get it resolved), I still needed to be on hand during the day. And then my partner fell foul of the local authority job cuts imposed on council's by Coalition austerity. He had to make a decision - take voluntary severance or hang in there and hope that the next round of cuts wouldn't include compulsory redundancy. We had a talk - I had been a full time carer for nearly five years, and the effects on my wellbeing and mental health weren't good. We decided to take a risk - he would take the severance package and I would look for work. 

Things were a bit ropey for a while (especially with the continued Coalition assault on social security benefits), but eventually I found a part time (well, 30 hpw, so almost full time) job. The salary wasn't great - about half what I'd been on before, but it was a route back into the workplace after a 5 year absence in my 40s - never a good time to lose skills and a track record!

By now, our household income was about a quarter what it had been in 2007, and we were held together by goodwill and tax credits. My partner now became our daughter's full time carer as she moved on from school to college. things should have been improving, but this was a troubled time for her (in part down to the college's actions) and it became clear that it would not be possible for him to find part time work to augment the massive £60 a week Carers Allowance he got for being permanently 'on call' for the next crisis (and there always is a next crisis). 

And then my parents became ill. My mother was 90, with the multiple ailments of old age and the beginnings of dementia, and my 86 year old father (not in the best physical health himself) was her carer. I had encouraged them to apply for Attendance Allowance and we were all (pleasantly) surprised when they were both awarded higher rate; indicating how much we just absorb caring into our daily lives without appreciating quite how bad things might be getting. In February of 2016, my father was given a terminal cancer diagnosis, with a suggestion from his GP that he should probably put his affairs in order.

And so our lives shifted again. Our daughter was still struggling with college, but I had to leave my partner to deal with that (and our other child doing GCSEs) while I went to work and then did a 500 mile round trip every fortnight to my parents' house. Trips to the hospital, a weekend where my sister and I turned their dining room into a downstairs bedroom, setting up care plans, talking to the hospice staff, making sure their bills got paid and, as dad got weaker, discussing mum's inevitable need for residential care (something neither of them wanted). I called them nightly from home during the week and the calls become less and less coherent as dad's morphine levels rose. Luckily, we had excellent care workers coming in four times a day for each of them, but towards the end I was getting panicky phone calls as their grip on time deserted them. My sister lived closer, so was able to call in on them, but her ongoing health condition meant that she was physically and mentally exhausted and was limited in what support she could offer without making herself worse. And even though I worked in the field of adult social care, it was still really hard work navigating the many and various departments and people involved in their care, from the excellent carers to the unhelpful social worker; hospital OTs, community OTs, hospice staff, district nurses, pharmacists, the GP, the local authority ASC department. It was a full time job, but at least I had the income from my day job, all £16,000 a year of it, to hold the family together back home.

One Friday in mid-June, mum was taken into hospital, and I got a call at work from my sister to say that mum wasn't expected to come out again, so maybe I had better come down straight away (I had been planning to go down that evening anyway). On the same day, dad was admitted to a different hospital with chest and urinary infections which had made him very poorly. I did the 5 hour drive and arrived very late at night (the M6/M5 traffic on a Friday could mean journey times of up to 6 hours). The hospital(s) hadn't phoned to tell us of any deterioration so we got some sleep and intended to go and see mum as soon as visiting time came round. As it happened, we were on our way there when the hospital rang to say she had taken a turn for the worse, and by the time we arrived she had already died. 

We then had to go to dad and break the news to him. To be honest, we both thought, looking at him, that he was about to join her that day, so I called my partner and suggested he and my son (who had just finished his last GCSE) come down by train. The following day, we were all together as a family, and dad held court from his bed - a hospice bed within the local community hospital - and said his goodbyes. Physically frail and in pain, his mind (now the urinary infection was being treated) as sharp as ever, and he was lucid and funny. We said our goodbyes, thinking this might be the last time we saw him.

On the Monday, I phoned work and explained the situation and was told to take whatever time I needed. In fact, dad lived another ten days after mum's death, and I spent a week sleeping on my sister's sofa and visiting him as often as possible (save for a quick, 24 hour round trip to vote in the referendum, having not had time to arrange a postal or proxy vote). As I was packing my bags to go home at the weekend, the hospital phoned to say he'd taken a turn for the worse, so another panicked call to work who (bless them) told me not to worry about it and to take the time I needed. In the end, dad died peacefully and pain-free on 28th June. My sister and I spent the rest of that week making arrangements for a joint funeral and initiating the legal processes as their executors, and I then returned home for a well-earned rest at work before travelling down again for the funeral.

There followed another few months of estate-sorting and house-clearing, involving more weekend trips and, finally, a large  rental van to bring stuff back home to sort and we finally closed the door on their home of 23 years in October.

In the meantime, we had managed to find our daughter another college place and get our son into sixth form college (he passed his GCSEs, if you were wondering). We are still caring for our daughter (we probably always will be, given the nature of her disability) and now my mother in law is showing the first signs of dementia, so it looks like the cycle is about to start again.

All of which goes to demonstrate that a new "worker's right" to twelve months' unpaid care leave is utterly useless - most of us cannot afford to do without pay for a year, even if our jobs are held open for us, and so we mostly just juggle our caring responsibilities as best we can. The best employers already make accommodations for their workforce; the worst don't now and will do their best not to in the future (and to be fair to them, why should employers subsidise the care industry by effectively seconding their employees to it for a year?). My partner and I have both, at various times, given up work in order to care for a relative, but it was a decision forced on us by other circumstances and we did at least have the paltry £60 a week the government deems sufficient to pay carers. Neither of us could really "afford" to give up work and it's been damned hard work coping on that much of an income reduction.

In reality, those who can afford to take up the generous offer of unpaid leave will, by and large, have parents with savings of their own; in other words, the already-comfortable middle classes. In essence, this policy will end up (by accident or design) being more about preserving inheritances than truly solving the care crisis.

And since when did the Conservatives ever really care about Workers' Rights?

Mad About the Buoy...

I went for my regular Sunday morning swim today. We have a lovely new leisure centre, which is well-used and inviting, with two pools (something of a luxury in this day and age). Today, owing to some staffing issues, the swimming lessons which usually take place in the second pool had been moved into the main one, with half of it roped off for general use. This made lane swimming a bit tricky for the Desperate Old Codgers like myself - I can keep up a slow and steady pace, but am easily sunk by an over-eager youngster suddenly lurching in front of me or splashing me unexpectedly. Still, no-one begrudges children their swimming lessons - it's a vital skill which will become ever more important as ocean levels rise....

As I was plodding along like an out of condition dugong I started to reminisce about my own swimming lessons. As I recall, my primary school took us every week, on foot, to the local municipal pool. Initially, this was the old Maidstone Baths, apparently the first municipal baths in the country (we also had the first municipal theatre, which as the theatre manager once said was ironic, as "the town has never been known for either its cleanliness or its culture"). 

I can't remember how young we were when lessons started, but it was certainly pre-decimalisation, because I recall taking a threepenny bit with me every week. Later, we moved to the brand new pool built in the early 1970s, which had a main pool, learners' pool and diving pool. A council-built and -run facility. A Tory council, no less. These lessons continued every week up to the end of what is now Year 6. 

Every week. For six years.

Now, our kids get one year's school swimming, to which they're bussed (a sizeable chunk out of the school budget). So if you're not fortunate enough to become a strong swimmer in the course of the year you probably won't get any better.

The only alternative is for your parents to fork out for lessons from the company that runs the leisure centre for the council - "from £16.50 a month" isn't easily found when money's tight, so inevitably, the poorest and "just about managing" will lose out again.

To be fair, Manchester City Council offers free swimming to the under 16s during school holidays but it's still no substitute for regular supervised tuition over a number of years to produce strong, safe swimmers.

Increasingly I'm feeling that if I wasn't fortunate enough to be part of the baby boomer generation at least I benefited from a childhood where the welfare state and civic provision was embedded in our post-war culture and made us a progressive nation. All that has now been stripped away by the cult of individualism that has marked the last 35 years. I grew up in an era when even Tory governments saw the merit in public provision. Successive governments since 1979 have outsourced everything of value to us as communities and then we wonder why communities have given up on politics.

I wonder what on earth we could do to start rectifying that....on June 8th?