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.