Written evidence from Susan Kirkman (COV0047)

 

Two groups particularly concern me- the elderly and those with a learning disability/autism.

The elderly are finding it impossible to book on line slots at supermarkets for home delivery and if they cannot go out are finding life very hard. Even the elderly who are able to go out are finding the slots dedicated for them to shop are very busy with long queues.

Many elderly have no access to either mobile phones or the internet, and many will be increasingly lonely. Isolated children are being given free access to the internet. This should be available to the elderly too, if they want it.

I am quite worried about the elderly in Care Homes. My understanding of the DOLs is that it is applied if the person it is being applied to is at risk of harm to themselves. This may indeed be true of some in Care Homes, but not all and personalisation seems to have disappeared.

Disabled/ Learning Disabled/Autistic people

Is the MCA being used properly? Is the material being presented to the above group, who need it, in a way they can understand and retain? Are they being given the chance to assimilate the information and use it? I am thinking about the use of social stories and images especially.

Are the views of the family/relatives/advocates being considered, when Best Interest decisions HAVE to be made. The families often have great knowledge of their family members which could be utilised.

It seems that several barriers may be breaching human rights. Are visiting restrictions in residential and Care homes valid? (See above re DOLS); are those with special needs being communicated with in the best way for them eg use of makaton; as assessments are being reduced under the emergency Care Act how can those going out of hospital, who need additional support,be properly assessed?

DNAR notices are a major concern of many who have disabled offspring. The NICE guidelines fuelled this when they placed autistic people in the frail category  and whilst I appreciate that hospitals have now been told that cases are dealt with on medical grounds, not on frailty grounds, we are aware that some hospital consultants regard the life of those with a disability as inferior to others. I am also aware that many with autism will present with challenging behaviour in hospital through fear and anxiety,and it may be seen by medical staff that they are just being difficult and so treatment will not be continued, especially when it comes to critical care. Again are relatives/ advocates being involved in the DNAR decisions?

The initial guidelines re social distancing did make life more difficult for autistic people, as many do need to be outside for much longer than the stipulated brief time. It was good to see that now autistic people are allowed to go out several times a day, but this has not been acknowledged with the general public, nor some police forces. Further and continuing restrictions should also be reviewed for those with autism/ learning disability especially.

The Equality Act, I believe, prohibits direct discrimination “arising from disability”. That means that all reasonable adjustments have to be made. Who is able to decide what these reasonable adjustments are if someone with a LD/Autism has to go into hospital? It would be so much more helpful to staff and the ill person to have someone with them who knows them well. Similarly following on from my last paragraph acceptance of reasonable adjustments have to be made in regard to social distancing.

Clinical staff will not necessarily be in their specialism at present and this too could lead to problems if they are unable to recognise autism and know how to deal with the effects on someone’s behaviour. It is possible that an autistic person may well be detained under the MHA when in fact they are just terrified and are unable to express that terror in a way which would be recognised by a specialist.

Care Act changes

Potentially:

There will be no detailed assessment of Care and Support needs. What does “As soon as possible mean”? It could be months away and needs are not being met for that time.

Retrospective charging would appear to be fair but how is this going to be communicated to the Learning disabled so they do not face a massive bill later which they cannot pay?

There is a fear that if the review of present support plans is to be delayed that funding will be cut without justification and discussion.

What is the difference between “eligible care and support needs” and the council having the “power to meet needs”. The implication is that for those with 24:7 needs, their funding may be cut.

23 April 2020