Discipline/punishment in the care setting

This is really just so sad. Take away any extras like having a disability, this just isn't the level of care any humans should get. Especially vulnerable, older people.

I had a chat with my mum this evening as she has support staff visit every evening to help her with some surgical dressings at 6pm them another visit at 9 to help her get to bed so I timed the call so I could speak to the carer.

The 6pm girl said she would ask her supervisor to speak to me as I know her and have helped her with IT things in the past so she owed me a favour.

When she called I asked about the CQC legistaltion and she said that the company were choosing not to apply all the requirements as they lacked the manpower or budget to do it. I did promise not to disclose the company name as a condition of her candour.

It was more cost effective to accept the fine for non compliance (a rare thing in their experience) than to train up their staff.

They have been struggling to hire enough care staff due to the low wages they pay (they are primarily paid by NHS Scotland and it is not much money they make) and they cannot afford their new hires to spend weeks in training as they have patients needing care now.

They operate services in Scotland and England and their approach seems the same in both countries.

Staff turnover is high and this seems normal in the low paid elderly care sector so they have been sourcing staff on working visas from Pakistan since the staff are more likely to put up with the hassles of the job and the low pay, but they staff need training in much more basic skills like UK law and guidelines for basic healthcare, social skills in the UK and of course the English language.

When I asked why there were not more local hires they said it was because the benefits system allowed people to have a comparable standard of living on benefits than on a low paid job and without all the hassle of dealing with the elderly or spending all day working.

With these sort of hurdles before they even get to learn about very niche conditions like autism it is no wonder care companies are choosing to ignore the legistlation that seems toothless so far.

I hope it changes.

To my knowledge (I only know a few care homes so this is far from comprehensive) they are paid by the patients, their estates / family or (for the lower cost ones) by the NHS / benefits service.

The ones I have looked at in detail are primarily paid for by the patients until their cash reserves run out then they are downgraded to ones that fit the budget of the benefits system.

There is an assessment process to review what assets the patient has and only once these drop below a certain level do the benefits start to get paid.

It has some subtleties too detailed to go into here but essentially while you have cash, you pay the bulk and only when you are poor will the state help out in a significant way, and even then it on their terms.

This has been for the Scottish system and I don't know if England follows the same process.

The care homes take money from patient and/or benefits and supply the staff, support and accommodation.

It is run as a business as there are just too many for the NHS to manage - over 300k people are in care homes in the UK and with the NHS struggling to cope with supplying healthcare to the masses, these special needs are an overhead they don't want to deal with so they are largely outsourced.

With the population aging so fast there will be many more in care in the near future as family support groups are becoming rarer and people are more commonly divorced so don't have a partner for support.

So the problem will only get bigger - not appealing for the NHS to try to take on.

So who pays the care homes? If they're making a profit, why can't the government run them & make a profit?

Iain said:

I'll do a bit of digging to see just how much training is involved here (not just for autism) to see what both the staff and the companies are faced with.

Re learning disabilities and autism, “The Oliver McGowan Mandatory Training is the standardised training that was developed for this purpose and is the government's preferred and recommended training for health and social care staff.”  

The Oliver McGowan Mandatory Training on Learning Disability and Autism

Lotus said:

I think it's disgusting that care homes are run as companies making a profit - they should be government run / non profit organisations.

There just isn't the budget for it - the increased tax burdon on the country for all such "nice to have" services would be crippling, especially with an aging population with limited support networks for them and fewer offspring to generate tax income to cover it.

It is a big headache for any government and I only expect to see it get worse.

As Bunny points out, a rigid interpritation of the rules says that the company must train their staff. It isn't clear what sort of grace period they are allowed to organse all of this as I imagine there must be a huge amount to train them on to cover every condition that is on the list.

This will be a financial hit for the company in training costs, lost productivity and cost of hiring cover for leave during training so I would expect there to be a generous period allowed for companies to get themselves sorted out.

I'll do a bit of digging to see just how much training is involved here (not just for autism) to see what both the staff and the companies are faced with.

I think it's disgusting that care homes are run as companies making a profit - they should be government run / non profit organisations. 

Staff can be trained while working - when I was a special needs teaching assistant I was given basic training in my role while working, then sent on a course covering all aspects of special needs learning support which was 1 day a month for a year and led to a nationally recognised qualification.

There used to be government funding for people to do work related courses, but I don't know what is available now.

Iain said:

applies only to new companies/services or ones which undergo a change to their services (eg they start to provide care for autistic groups).

Details on this are here : https://www.ajg.com/uk/news-and-insights/who-needs-to-register-with-the-cqc/

I suspect this was to avoid a huge surge in applications when the Act began and I do hope they get around to retrofitting it to all care providers.

If the OPs company was providing care to autistic groups prior to its enactment then they can continue without offering training or the other facets of GQC unfortunately.

I'm afraid that you have misunderstood a (rather poorly written) third-party resource. As the CQC itself explains:

"Any person (individual, partnership or organisation) who provides regulated activity in England must be registered with us otherwise they commit an offence."

"You must register with us if you carry on one of the activities we regulate."

CQC - What is registration?

Also:

"Section 8(1) of the Health and Social Care Act 2008 describes a regulated activity as “an activity involving, or connected with, the provision of health or social care”.

The activities listed in Schedule 1 of The Health and Social Care Act 2008 (Regulated Activities) Regulations 2014 are the regulated activities specified for the purposes of the Act.

If you carry on any of the regulated activities specified in Schedule 1 in England, you must register unless an exception or exemption applies."

CQC - Scope of registration: Who has to register?

(From a legal perspective, The Health and Care Act 2022 effected its changes in respect of training about learning disabilities and autism by amending the Health and Social Care Act 2008).

Bunny said:

Providing appropriate training for staff who support autistic people was finally - albeit woefully belatedly, in my view - made a legal requirement under the Health and Care Act 2022. Since July 2022: 

A good point Bunny  - it is worth noting that this only covers England and applies only to new companies/services or ones which undergo a change to their services (eg they start to provide care for autistic groups).

Details on this are here : https://www.ajg.com/uk/news-and-insights/who-needs-to-register-with-the-cqc/

I suspect this was to avoid a huge surge in applications when the Act began and I do hope they get around to retrofitting it to all care providers.

If the OPs company was providing care to autistic groups prior to its enactment then they can continue without offering training or the other facets of GQC unfortunately.

Expecto_Patronum said:

Firstly, I think it's really worrying that you work in a setting like that and have had no training in autism. Makes me wonder how many others haven't either.

Providing appropriate training for staff who support autistic people was finally - albeit woefully belatedly, in my view - made a legal requirement under the Health and Care Act 2022. Since July 2022: 

"All health and social care providers registered with the Care Quality Commission (CQC) must ensure that their staff receive training in how to interact appropriately with people who have a learning disability and autistic people, at a level appropriate to their role".

CQC - All CQC-registered providers to ensure their staff receive training on interacting with people with a learning disability and autistic people

Any legitimate formal complaints should lead to remedial action being taken, given that this is now a legal requirement.

NAS - What can I do if formal support is not offered or is not enough

I can see the difficulties in training to that extent but the basics should be very much done. And there should be individuals trained in specialisms to give greater support. For example, surely a carer for someone that is profoundly deaf should be trained in sign language so that they are able to communicate. People with disabilities are human too and they should have their needs met. I understand businesses need to be feasible but cost shouldn't come over need.

Expecto_Patronum said:

People shouldn't be written off as not mattering because they are in a small percentage of the population.

I agree but I also see the limitations of the company trying to run a profitable business cannot afford for their new staff to spend 6 months in training before they are allowed out in the field.

I say six months because if you consider every group of "special needs" people who they would need training for (dead, blind, mute, ADHD, bipolar etc etc then to adequately train the staff for all of them would take a very long time and just not be cost effective for them to provide the service.

This is the sad fate of minorities unfortunately - we are just not cost effective enough to get the level of care we would really benefit from.

This is part of the reason I try so much to get people to help themselves where possible.

For me that just sits in the category of not good enough. People shouldn't be written off as not mattering because they are in a small percentage of the population. Very sad.

Sorry I'd like to correct myself. We have had very basic E learning training on ASD but not really on way to cope with that behaviour. We have also had a zoom call training session on demand avoidance which was very good and did have helpful methods of managing challenging behaviour. 

As to the residents triggers it is very hard to tell, she can do it in a variety of situations, I've come to think it's just an impulse in the moment when overwhelmed. She can do it happy or sad or sat next to you quietly whilst she's watching tele. 

Thanks again everyone. Hopefully I can start implementing some changes at work. I'm sure management will be open. 

Expecto_Patronum said:

I think it's really worrying that you work in a setting like that and have had no training in autism. Makes me wonder how many others haven't eithe

My elderly mother has multiple carers visit her every day at home to help her with assorted medical and mobility needs and none of them had much knowledge about autism.

These are provided by the NHS who outsource the service to a 3rd party and this company sponsor most of their employees as young women on work visas from Pakistan (based on the 20 or so who have been in attendance over the lst 2 years).

They do receive training in the UK but this is primarily in helping them communicate more effectively, on the rules and laws they must follow and on practical advice on helping elderly patients.

There is no interest in training them in the needs of the 1-2% of the elderly population who are autistic as statistically we are not significant enough to merit it.

From my discussions with the staff and their supervisors this seems the crux of the matter.

Hi and welcome to the community.

You and your colleagues might find it helpful to access the online and local support for carers (and parents) provided by Autism Central, an NHS-commissioned peer education programme that’s a partnership between nine charities including the NAS:

NAS - Autism Central

The NAS’s own resources might also be of help:

NAS - Behaviour

Try to assess what triggers her outbursts. Is it when she is tired or hungry? Is it when there is a lot of noise? Is it in the morning when she hasn't yet had a chance to use her iPad to relax with and so is feeling stressed because she can't have it yet? Is it in the afternoon while she is using her iPad and she can't deal with the interruption of someone talking to her while she's concentrating on something she likes?

Maybe she needs a mid morning snack, maybe she would do better having her iPad for a short period after breakfast and bathroom, then another short period after lunch and toilet. Maybe she needs to be told that If noise upsets her she can go to a quiet room. Maybe she needs to be given prior notice of a change of activity or that her mum will be visiting soon. Maybe she would benefit from a visual timetable.

If she self harms after the outburst it sounds like she cannot control it and it causes her distress, so her carers should be trying to help her to avoid this behaviour. I agree with you - I do not think that punishment is appropriate in this case.

There are some articles on this website that might help too - if you click on the 3 lines at the top of this page then click "advice and guidance" then choose the topic " behaviour" you will find articles which include one on distressed behaviour and another on meltdowns. I hope this is helpful.

Hi Sack_Jullivan 

your concern does you credit I believe

Lots of good points made by Tears_before_bedtime and Expecto_Patronum and yourself

I'm saying the same things I think in respect of:

Yes, doing the same thing and expecting different results is not generally considered to be wise behaviour

finding out what is triggering it if possible?

Are there signals that are can be observed in the person before the outburst occurs 

Are there changes in the person's environment and experience that precede it that may be causing it - maybe a closer investigation of this might reveal something

The person as you describe them is clearly upset by the outcome 

Does the person themselves have any insight they are about to "have a bit of an episode" - if they do not then punishment seems unfair to me. Especially if others might reasonably be able to have that responsibility.

"prevention is better than cure"

Working with them to be able to identify what they might be about to do - calming before it happens seems an idea to me

"de-escalate"

If de-escalation is not possilble...

If the behaviour is mpulsive and learning to restrain this is hard.  Reshaping the behaviour to use "soft hands" allows it's expression albeit with a literally different impact would be great thing to explore.

Maybe worth considering what reward does the person have for behaving in a different way?

The i-pad is itself used to stimulate the "good" behaviour of being docile and passive so removal of it as punishment seems a strange thing indeed.

I suspect there may be other reasons why the person is so upset in respect of not having the i-pad - e.g. the evidence of withdrawl from social contact may be because they are upset with themselves, or upset at being "disciplined".

Overall living with the disabilities the person is indicated to have seems to be a punishing environment in itself.

Yes training for all, learning from it and using it to beneficial effect for all seems to be especially important in context...

This website has this page as a resource Positive Behaviour Support (PBS)

My observation would be that taking her iPad away clearly doesn't work as a method for modifying her behaviour. As it doesn't work why keep doing it?

I think it would be beneficial to try and explore what lies behind her outbursts. That's going to be difficult obviously, but surely something trained professionals in a clinical setting could attempt?

It also might be possible to encourage an alternative outlet for frustration/meltdown that doesn't hurt carers or her. Again I expect this would be difficult... but trained professionals etc. I switched from digging my nails into my palms repeatedly, which gave me bruises, to tapping my fingers together for example.

I have no medical or psychological training so can't offer professional standard advice, but those are my thoughts. 

Firstly, I think it's really worrying that you work in a setting like that and have had no training in autism. Makes me wonder how many others haven't either.

Secondly, I believe you are right. If she doesn't have that level of understanding, then a consequence like that is not going to help. It sounds like a very impulsive behaviour. It would also be better if they were teaching and encouraging her to use kind hands rather than telling her no hitting. But any consequences that are used should be immediate and in level with her understanding. By the sounds of her level of understanding I'd say they should be pretty short consequences such as no iPad for 10 minutes, rather than no iPad for the rest of the day.

As far as the iPad goes, I can see not letting her just have it all day but her watching TV instead doesn't make sense if it's about screen time so again I think you are right. I don't think her being on it solidly from 2 to when it does sounds great either. Personally I would say it was much better if she had a schedule for the day where for example she does an activity, does a task you need her to do such as go to the toilet and has the iPad for a while. So she can have her iPad time periodically throughout the day rather than in one long stretch. Screen time is a heavily debated topic. Some think it needs to be regulated as it can be over stimulating etc, others see it as a regulation tool in itself and think it should just be allowed. I lean towards the I think it should be regulated side.

This is all just my opinion, others may have a different perspective.