Category Archives: Social care experiences

Change

There is a myth that people with autism cannot cope with change. This ‘catch all’ phrase is often used within services for people with autism, and sometimes this becomes an expectation that is created by the staff – a situation where ‘my attitude affects my behaviour which affects your attitude affecting your behaviour’.

One person that I supported had a weekend holiday booked to Paris. On the morning of their departure the staff supporting her came to the office and asked for her passport (normally kept safe with her paperwork). We searched and searched, but couldn’t find the passport. This meant telling the lady and consequently upsetting the planned routine of the holiday as she had come to expect it. We eventually found the passport, but not before the plans had been severely disrupted. The lady and her supporting staff member missed their train.

They managed to catch the next train, leaving them short of time, but just managed to get to the Channel Tunnel on time. At this point Customs decided to search the lady’s handbag.

They got to Paris without any further problems. That evening they decided to go for a walk and explore the surrounding area. They both became a little disorientated and lost their way back to the hotel. In fact it took them about an hour of walking in circles before they found their hotel.

The following day they decided to do what holiday makers do and see some sights. They began with the Eiffel Tower, getting the lift up to the second floor. However, just before the platform the lift became stuck. They were now in a small cramped, crowded and noisy area waiting to be rescued. It took over half an hour for the lift door to be opened, with all the occupants having to step up to get out. To add insult to injury they then had to get down the Eiffel Tower by the steps – all 674 back to the first level and then as the lady refused to get the lift back to the bottom, they had to walk the further 347 steps back to the ground.

The next day, in order to play things safely, the staff member and the lady decided to get a tour bus to see the rest of the Parisian sights. Being unused to the traffic of the city, this was an ambitious challenge. And in keeping with the rest of the weekend, this too bought with it another test for the lady. The bus had a collision with another vehicle and they had to wait for a second bus to take them back to their base.

Thankfully the final morning and travel was without major incident.

On their safe return to the residential home, the staff member filled me in on their hapless holiday. She adamantly stated she would not be available to take the lady away again. I sympathised (in best ad hoc supervision style) and questioned just how many incident reports she would need to complete.

The staff member looked at me incredulously and told me that there had been no incidents, the lady had been composed throughout all of the trials that she had faced and other than natural irritation she had kept her cool and accepted each ordeal without any of the agitation that we have had to deal with on a daily basis.

I asked her why then was she so resolute in not supporting the lady on another holiday, when she had so obviously coped extraordinarily well with all of the change. The staff member agreed, she had managed well, but what she could not handle was the repetitive communication that she had had to continually listen to, with no chance of abating that had occurred once the lady realised that the maid in the hotel had been into her room and slightly, just slightly, moved the position of her flannel on the sink….

 

How social care lets down the introverted carers

It’s nothing to do with the stereotypical characteristic of ‘being British’ it’s about personalities. It’s not even about ‘not wanting to make a fuss’. It’s about patiently waiting for the professionals to do their job. Unfortunately, when the social workers are overstretched and their job becomes a continual fire-fight the introverts are left behind. The crisis has either passed, or become the norm.

I speak (well, blog) only from my own personal experience. My girl has a social worker – she’s ‘been in the system’ for the last 14 years (children and adult learning disability services) since her mother (my sister) died. Her main disabilities are due to sensory and processing differences. She’s not ‘complex care’ or ‘challenging behaviour’. No cause for alarm there then. My husband and I are both 20 years plus working and training social care staff – so we know the system.

In the last 14 years the social work team have seen my girl and me probably about 8 times. And that’s being generous. Certainly not annually – in fact she hasn’t seen a social worker for the last 4 years. There was a three year gap before that, and eighteen months before that….

It’s scary how the potential for issues to escalate is not addressed, how support is neglected unless ‘bumped’ up the list of priority (or not).

At one meeting (an emergency planning meeting for my nephew) I was read a report stating that I was demanding and the social worker reported that she was highly concerned that ‘[Mogs’] placement’ was breaking down – “not if, but when” was read out, with dour face totally unaffected by my tears of anger and disbelief.

I was read this report when my girl was 9 (some 9 months after she moved in with me) but no one had visited us in months, either before, during or after this report was written, or even in the seven months following it’s public airing…And this was not long after the horrendous death of Victoria Climbie, and the atrocious court case that followed. During this time social services talked at length about ‘lesson’s learned’. And although Mogs wasn’t (in my opinion) at any risk, her file was full of opinionated comments relating to my then husband’s mental ill health, my (alleged by them) continual financial requests (which were in fact for a kinship allowance) and ludicrously about me being seen driving around town in a brand new green car! (Of which never occurred – unless I have a double).

I’ve had numerous occasions when I’ve felt I don’t know what to do, I’ve raised concerns regarding potential serious safeguarding issues, we’ve had educational and currently have major employment issues. I’ve allowed the system to ‘put me off’. And feel we’ve become the bottom priority. Because I’ve spoken, hinted, made concerned comments and not complained, shouted or screamed. Not because I don’t think I need to, but because it’s not my way. I’m essentially an introvert.

I don’t ask for help in most areas of my life, my husband has to work out when I need support; he’s become the expert in offering. That’s the key really. Being available.

Mogs is an adult now and doesn’t want us being involved in everything. She’s her own person. But she still needs support. It’s pretty devaluing for an independent minded 23 year old to still have to run to us for her support in matters of employment seeking and benefits, but she has no choice. You see she’s an introvert too. And she hasn’t learned the effective example of ‘how to do it’ from me. The British social care system is less ‘if you don’t ask you don’t get’ and more ‘if you don’t scream loudly, make threats, link to potential safeguarding, court cases or infer cost implications then you don’t get’.

But then again, if you do scream loudly, make threats and keep shouting you’re a troublemaker, a ‘difficult’ parent or just known as a total pain in the ass who needs to be suppressed. And there is one heck of a lot of evidence out there to show the extremes the system will go to in order to suppress those that seek justice…

Bit of a lose-lose situation really.