Dont Assume things about me just cos I live in Care!

Living in a residential home, it’s sometimes difficult to work out quite what “role” I take, particularly in other people’s eyes.

There are various technical difficulties with living in a building registered as a “business”. For example, the Council won’t collect bulky rubbish, and I have previously had difficulty getting some things supplied or delivered (e.g. broadband) as they only supply “residential properties”. The fact that I live here doesn’t always work in a “computer says no” situation.

Perhaps more worrying is the assumptions others make about me because I live in a residential care home. Both the home and I have contacted various organisations to tell them that I deal with my own affairs and have my own phone line – but still, I have yet to persuade the NHS wheelchair repair people and the District Nurses to speak to me direct! They phone the home, assuming the Home run all my affairs.

Some tradespeople assume it’s OK to turn up at their convenience and without notice; over the years, particular failures of this type have been perpetrated by lift service people (cutting it off at no notice) and hoist repair people amongst others. (Though I’m also cognisant that this happens elsewhere!) They seem to assume that as the home is “manned” 24 hours a day it doesn’t matter when they turn up.

Then there was the time the home registered everybody – including me – for a postal vote without asking the residents. I’d rather go to the polling station.

“Charitising” fee-paying residents

Whilst frustrating and inconvenient, the above are simply a symptom of a worse disease: assumptions made about people living in homes. I find it most vexing. It’s one level on from the assumptions all disabled people face. I also have to continually fight internalising these assumptions.

Like many homes, particuarly homes for “younger” adults (under 65), the one I’m in claims to encourage personalisation, independence and normalisation; to work against segregation and preconceived ideas about disabled people.

So why is it that there’s a fayre advertised at the home for Saturday, to raise money for a new minibus.? There are huge signs around the town advertising it to all and sundry for the public to come. To me, this fair is about as welcome and appropriate as the proverbial fart in a spacesuit.

I object to the public being invited into my home, my personal space. A few years ago at the fair, I decided to go to bed for the afternoon; but random public opened my bedroom door and wandered in!

I also object to the perception of me and other residents as charity cases. I know my fees are over £1,000 per week to live here. On top of that, we pay 60p per mile for transport in the minibus with a volunteer driver. And that’s just the beginning of my financial objections in this area; let alone the more moral and personal objections.

Sod off, Father Christmas!

It’s nearly as bad as some bloke in a red uniform coming over on Christmas Day, dancing in our living room and giving out shortbread as his self-serving patronising gift to the Tiny Tims. If I’m at home, I hide in my bedroom until he’s gone. It’s not pretty; a 33 year old bloke hiding in his bedroom to avoid Father Christmas.

That’s organised by the well-meaning but misdirected local Lions group. The rest of the year, when we need people to assist residents to get out and about, we don’t see them. It’s pretty stuffed up really.

We Live Here

Next time there’s a debate about what to call us – service users, customers,  charity recipients – how about normalising us and calling us residents? You never know it might just start to sink in.

Though I doubt it.

With thanks as always to Dave Lupton / Crippen for his most excellent cartoon. Image courtesy of Crippen / Dave Lupton Cartoons: www crippencartoons.co.uk

“Choice” in residential care

There’s been a movement towards “choice” in social care over the past couple of decades. This has percolated through to some areas of residential care, such that providers who want to claim they are half-decent at least give the appearance of complying with “choice” – along with the standard others such as respect, dignity etc. which are trotted out at frequent intervals without most care providers having any real concept what they mean.

Having lived in one home for ten years and stayed in many others, I argue, however, that the choices supposedly offered in res care are superficial. For example, services trumpeting their acquiescence to residents having some choice over what colour dress they wear, when they get up etc.

Don’t get me wrong, when I say “superficial” I’m completely aware that these choices are incredibly important to residents. I’ve seen instances where service users have had their choice of clothes overruled by staff using blackmail, and experienced situations where I’ve been told I couldn’t have a shower on Christmas morning etc. I know these apparently “small” choices are incredibly important.

However I’d argue that the bar needs to be raised. These sort of everyday “choices” should be assumed, not trumpeted about. The real “choices” that service providers offer should be on a different scale to this.

Who do you live with?

A large proportion of us in the Western world have at least some say over with whom we share our living accommodation. This seems a reasonable choice to have, in my view.

The National Minimum Standards (NMS) agreed. Unfortunately, they were inadequate, largely non-compulsory, dubbed “aspirational” (despite their name!) and roundly ignored. They are no longer in use, although on discussion with the Care Quality Commission (CQC) they were recommended as “good practice” guidance, given that CQC didn’t replace them. This is presumably because CQC were in the process of becoming a dysfunctional, focusless and toothless bureaucratic super-quango.

It’s a shame because some of the concepts in the NMS were (are!) considered revolutionary, though I’d argue that says more about the situation in residential care than it does the content of the NMS!

Here’s what the NMS has to say:

8.3. Service users have opportunities to participate… in activities which enable them to influence key decisions in the home… including

iii) involvement in selection of staff and other service users.

Further,

4.3 A minimum three month “settling in” period of residence is offered for long-term placements, followed by a review with the service user of the trial placement, during which existing users are consulted about the compatibility of the prospective new resident.” (my emphasis)

The Reality vs The Rhetoric

As I wrote in an (unsuccessful) complaint to Leonard Cheshire Disability, who run the home in which I live,

I am also of the opinion that non-compliance with this good practise materially and detrimentally affects residents’ rights, their feeling of “ownership” and their overall happiness or otherwise in the service.

The really sad thing is that this choice did occur in Leonard Cheshire homes in the past. A resident, quoted in the Northumbria University research report, states:

“When I first came here six years ago the residents could have a say in who lived here, whether a new person was accepted or whether they were refused.   The head of home and the head nurse would be there, there would be a volunteer from the outside world and one or more resident.   People had a four-week assessment and not everybody got in on that assessment.   Then it got changed and nobody gets refused now.

There are a number of consequences to the removal of choice in this regard. The above resident went on to discuss the issue of residents with increased care needs, thus increased fees / income to the home, being accepted without any increase in staff, meaning everybody’s service was degraded. I have experienced service users with antisocial behaviour (sometimes impairment related, sometimes not) having a major impact on my life. These are people I share my home with – I share living quarters etc. – not just neighbours.

Institutional reactions to attempts at “choice”

There’s a real “what’s right for the goose isn’t right for the gander” situation here. I’m sure care home managers would expect to have some element of choice or say over who they live with in their house. I can imagine the reaction if they were told somebody was moving in without them even being consulted.

When I have raised the right to have some say in who I live with, I’ve experienced the following responses:

1. complete blanking
2. when it was in place it was used to “bully” potential service users and was very judgmental
3. the manager assesses potential residents and considers compatibility with existing residents in that process
4. it’s not fair for potential residents to have to go through the experience of selection including potential service users; I’m ignoring their rights
5. I didn’t have to go through this process when you moved in, why should others now?

To which I would respond:

1. if you’re going to blank me don’t claim to empower residents or to give them choice!
2. I’m sure this happened; but:
   • “choice” includes the choice to behave badly
   • managers are more than capable of bullying and being judgmental themselves, as I’ve discussed elsewhere.
3. There’s an implicit assumption that managers never makes mistakes! More importantly this is part of the paternalistic “we know what’s best for you” culture that the “choice” drive is supposed to be challenging.
4. It’s no doubt just as galling when a manager says “no” to potential residents. Who makes the decision is irrelevant.
5. This is a specious argument, trying to shift the blame and unreasonableness onto me for something that wasn’t my doing.

The real fear

I distinctly get the impression that care home managers are looking for “legitimate” arguments to cover for their real fear. Consciously or unconsciously, they don’t like giving up their “power”, their control over disabled people, or the associated admission that disabled people can take on responsibility for their own choices and lives. As they can’t openly say that, they make up specious arguments.

There’s also a fairly clear though unacknowledged amazement and discomfort that a resident has had the audacity and personal resources to discover and ask for their rights. Despite all the rhetoric the service provider is generally unaware of the rights enshrined in such policies (even providers’ own!), so there is also often transparent revulsion at this discovery, though they don’t admit it. I usually find I know their procedures and my stated rights better than they do.

Whilst I have picked out one particular example here, this fear impacts on all other choices as well. When I have attempted to insist on my rights and choices being respected within residential care, I’ve faced all sorts of assumptions which appear to boil down to the following:

• I’ll bankrupt them – seemingly based on the assumption that I don’t know about finance or care about the home’s future
• I only want it for my own nefarious reasons; – they lack the ability to see that I’m standing up for residents rights
• I’m a troublemaker, who enjoys making trouble for the sake of it

Etc. etc. All of which will no doubt be echoed in experiences of disabled people and service users in all sorts of contexts.

This boils down to to a wilfully (even desperately!) held assumption without any evidential back up, that to relinquish such control would automatically result in me and other service users selfishly abusing their power in a manner to which paid management are obviously immune.

Residents’ genuine choice benefits everybody

I’d argue differently: I’d say genuinely and openly granting such choice has the potential to result in better situations for everybody, including staff and the company. (I hesitate to say “charity” because Leonard Cheshire is only a charity in name and for certain convenience.) It also has the benefit of potentially reducing the abuse of power by management and staff.

That’s only discussing the potential benefits in terms the management would think important. Of course, of real greater import is the beneficial effect on  rights and experiences of the service users.

Courage, citizens!

We need to resist this infantalising of residents; this degrading of the concept of “choice” for the sake of service providers’ fear and mis-applied pride. Given that many in residential care have no current prospect of escaping, and that the number in residential care has been static over the last few years, we need to ensure choice is afforded within these communities. (As well as working towards the choice for people to move out.)

The sad thing is, though, that many people in care homes have scandalously been conditioned over decades of witting and unwitting conditioning / emotional manipulation by staff into not expecting such choice, or knowing what to do with it when they get it. Similar expectations have become ingrained in staff, though I have no bone with care staff who I think do an amazing job despite the poor “status”, pay and conditions, unsociable hours etc.

Some residents must be able to choose not to have choice (that almost sounds like tautology, but I don’t think it is!) I’d argue, however, that staff shouldn’t be able to withhold choice from residents against residents’ will.

Such radical change, to accept residents’ genuine (not superficial) choice, is inevitably going to be difficult for staff and residents. It will cause all sorts of fear. But if we really believe in the rhetoric, we have to make the reality happen.

Changing to embrace Choice

I believe there are four stages in step changes in organisational responses to rights.

1. Neither recognising nor implementing the rights
2. Grudgingly recognising the need to appear to adhere to the rights, but not believing in them or actually making them happen
3. Recognising the rights, but not following them by not recognising their import or out of expediency
4. Recognising and implementing the rights.

We’re stuck somewhere between 2 and 3 here. Somebody give the process a kick up the arse. Please.

This resident chooses Choice.

With grateful thanks once again Crippen / Dave Lupton Cartoons: www crippencartoons.co.uk for his very apposite cartoon!