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When carers can no longer provide care - short term

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Laura
Laura

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Does anyone have any information or top tips of how to explain to an adult with autism that the person who has been providing their care (parent) will not be able to provide their care for a while.  I am thinking of  if the carer has a planned hosipital stay or becomes ill but will be able to ressume care in the future.

I am looking for something generic such as a factsheet which could be passed on the families.

 

Laura

Edited on February 23, 2017 - 9:07am

May 13, 2015 - 3:46pm

Hello Laura,

I understand that you would like some advice about how to explain to an adult with autism that their care may be changing.  You mention that it could be a parent who has to go away to a planned hospital stay.

Unfortunately, we don’t have specific information on this kind of thing of change, but we do have information on preparing someone for change that could be passed on to families:  http://www.autism.org.uk/about/behaviour/preparing-for-change.aspx

In terms of more specific tips, I wonder whether it could benefit the adult to understand why the carer is not able to look after them anymore.  Often, people with autism are visual learners, so can process information much easier if it is in a visual format (it eliminates the need to understand someone’s non-verbal communication, as well as being a more permanent form of information rather than speech) .

A visual such as a social story could be useful for explaining this?   A social story is something that can help a person with autism to learn more about a concept and develop social understanding.  For example, you could use a social story to explain to the adult that their carer is in hospital to have an operation, and why they have to stay in hospital and the implications of their treatment on their caring role.  You may then include more information about what you can say to someone if they are going into hospital. 

For adults with autism, there may be a need to know what is happening; if there is an element of unpredictability or unknown (such as changes they are not prepared for) it can lead to high anxiety.   The more you can do to show them what will be happening and why, and what they can do if they find the change hard, the better.

Depending on the needs of the adult, and what their preferences are may mean you need to use a slightly different approach, or make it more personal to their needs.

You may find this information useful on social stories, and how to write them:

http://www.autism.org.uk/About/Strategies/Social-stories-comic-strips 

Another important factor is making sure the adult has an appropriate way of coping with their anxieties, if the change is stressful for them.   Perhaps you could take with them about relaxation techniques, or ways of helping their body feel calmer and practise doing these following any stressful situations.  Here is more on anxiety for adults:  http://www.autism.org.uk/about/behaviour/anxiety.aspx 

I hope that helps!

Regards,

NAS Helpline Team

May 21, 2015 - 4:08pm

Dear Laura,

I work for a Carers Charity in North Wales and I am also Autistic, so I can try to explain from both sides. Different things can be instigated depending on the situation. 

Illness is very different from a planned hospital stay as an illness can happen at any time. With illnesses a high percentage of Carers become ill due to their Caring role. The pdf called 'Down Load Carers at Breaking Point' on the www.carersuk.org.uk will give you more information. It is important that the Carer can reconise when they are becoming ill and need help. Contact your GP is cructial if you are worried about your own health. You can also get some more support from your local Carers Centre - www.carerstrust.org  or asking your social services/carer centre for a CNA (Carers needs assessment).

Section 1:

If you are unable to Continue with your Caring Role due to illness/mental health:

If the Carer is unable to cope with their Caring role (this is usually referred to Carer Break Down), the first port of call is it contact your GP or Out of hours GP team. The GP can instigate a Crisis Team to support the family - www.rethink.org (They have a very good fact sheet on the Rethink website regarding Crisis Team.)

A secondary option is if there is a social worker involved, you try to contact the them. If no Social worker is in place you can try and get one via SPOA (Single Point of Access - Wales only) or First contact/Duty team at your local County Council. If there is a CPN (Community Pyschiatric Nurse) involved instead of Social Worker you can try to contact them. Involving a social worker or CPN can be very useful as they often know the background of the family situation. A CPN is usually involved if there are medical needs.

Section 2:

If you are unable to Continue with your Caring Role due to going into hospital:

If the Carer is in hospital for a planned operation, before the Carer goes into hospital, the person they care for would hopefully have support already in place. There are number of different senorious the Carer can follow depending on the person they care for needs.

1. If the person the Carer care for is able but need a little bit of support, a family member or friend could help out. Make the person who is needing support aware of this change of routine by instigating this support even before the Carer goes into hospital.

2. If a social worker is involved and the Cared for is entitled to direct payments,  the direct payments can be used for a support worker (usually of the Carers and Cared for choice) can be used to cover the time for when the Carer is in hospital. This can give the Cared for consitancy as the person who you employ will already be know to the individual. It is often useful to speak to your social worker before going into hospital and discuss direct payments with them as there may be an alternative budget.

3. If there is a social worker in place and the person the Carer Cares for cannot be left (due to age or behaviour), the social worker with the Carer and Cared for can look around for suitable place for the individual to stay. This will be implemented before the hospital stay so that the Cared for can become familiar with his/her temporary surroundings and routine.

4. If you don't want social services involvement, you can always look for a Carer agency that specialise in Autism. Carers Trust Crossroads is a nationwide sitting service and they do support people with Autism (and any age too). Some counties do have their own Autistic Specialist Sitting/Support Services. In flintshire we have AAAS. If you do use your own agency depending on what you want them to do e.g. shopping, cooking, cleaning, personal care etc, they will be a charge. If you want more information, try contacting you local Carer centre. 

Section 3:

When coming out of hospital this may be a challenge for a Carer too as their own health needs. It is importnat while in hospital you speak to the the hospital social worker. For when you come out of hospital, the hospital social worker will instigate any additional support you may need. These could include:

1. OT assessment,

2. Reablement team,

3. HECS team, (Wales only - I think),

4. Social Worker or CPN,

These will focus on your needs as you are the patient. Even though they will focus on your needs they should encompass the whole family.

There aren't a huge amount of factsheets available, but if you contact social services or your local carer centre, they should have fact sheets about anything to do with supporting people with disabilities.  Also check out your local county council website for information as every county can be different.

Take care

Ben