Covid query -learning disabilities : I have contacted... - Mencap

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Covid query -learning disabilities

AES71
AES71

I have contacted my GP to ask if my daughter is on their register for learning disabilities for the COVID groupings to be told that despite her many issues she doesn’t meet the criteria of an IQ below 60. My questions are (a) how on earth do they know this as she’s never been tested, (b) does the level of her IQ really dictate whether she meets the requirement to get the vaccine in the medical group rather than all the medical issues she has, along with the fact that we now know that DNRs are in place for people with learning disabilities.

They are also saying that we are not registered as her carers.

My GP is calling me back next Thursday but I am stunned that despite her issues and the fact that she has been in, and is at, special schools/college they can say this.

I would really appreciate your comments on this.

Thank you.

20 Replies

My daughter is in the same position. Been at a special school since she’s 3, she is 17 now. Has an understanding of a toddler.

We too are in a similar position. Our daughter aged 34, Hydrocephalus, Epilepsy, autistic spectrum, to name but a few of her problems, lives with us at home. Both my husband and I work full time, therefore have paid (by the local council) care in our home at least 5 days a week. The rest of the time her care is carried out by us, her parents. The carers have all been vaccinated but as we are not paid to care for her we are not eligible and unless we can prove (?) we are unpaid carers we won’t be able to be vaccinated in that group either. The only thing we have going for us is we are both in our 60’s so hopefully will fall into the same group as our daughter.

I think there is no consensus nationally on who with LD gets vaccinated but I have never seen it as arbitrary as required IQ below 60!

My own son is 31 with autism and moderate LD and is being vaccinated in his supported living on Friday - but only because his CLD team have decided to vaccinate all their clients. We are lucky as this is not national policy and we also live in Scotland. I wrote to our First Minister Nicola Sturgeon because I was horrified that this group were being left out when they are 30 times more likely to die from Covid. Can I also stress that DNR cannot be out in place without consent from legal guardians too .

You should discuss with with your learning disabilities team

Yes just want to reiterate that DNR’s ( do not resuscitate) CANNOT be put in place without legal guardian consent. My son’s support services rang me regarding this asking me yes or no, It felt so scary. They said they had to ask the question, even though my son was otherwise fit and healthy. Quite shocking really as this applied to all age groups.

Hi, Interested, as I have been campaigning for months, without success, to have the vaccine available for my 62 year old brother with LD and compromised lung capacity who lives in a supported living environment in Glasgow. The JCVI guidance is that those with severe and profound LD should have the vaccine in group 4, the Scottish Government have decided to offer this in group 6. Many GP's are vaccinating all with LD. My brother's GP has refused, even though he is in 24/7 care.

Hi In England because your brother is 62 he would be in group 5 which they have started now the over 65’s then the over 60’s.Then people with severe and profound learning disabilities are in group 6. Obviously your in Scotland, would he not be in group 5 because of his age at least, or is it different in Scotland.

DNR should definitely not be in place without discussion and agreement by family members.. The CQC are supposed to be investigating this blanket application of them. DNR is supposed to simply mean do not attempt cardio respiratory resuscitation. It does not mean withhold treatment all together. However from personal experience I suspect that may be happening even to the extent that something as basic as antibiotics are withheld.

I actually had to argue with a paramedic once and point out that the GP said my relative was to go to hospital. We had already waited all day for an ambulance. My relative was treated in hospital and came home in less than 24 hours.

Although terminally ill she wanted to live and went on to live several more months. It might have been very different.

I am afraid to say that I suspect that in some cases DNRs are not being used as they are supposed to be and are being used as an excuse to not treat people. I don’t know but I think it may actually be illegal.

Any advice re my daughter not being on LD Register or GP not recognising is as her carers please. Am desperate. Thank you.

Lindypops56
Lindypops56 in reply to AES71

Do you have a social worker? You definitely should have one of your daughter has LD. I’m assuming she has a formal diagnosis?

Are you in receipt of any benefits as a result of your caring role? That should provide the proof that you are formal carers. You don’t say how old your daughter is so has she somehow slipped through the net with services? Did she have support at school etc.

As I said you really need a social worker to help you to navigate the system but you also need a confirmation of the type of disability your daughter has. Disappointing that your GP appears less than helpful!

AES71
AES71 in reply to Lindypops56

She has a social worker, my daughter is 19. We are unpaid carers, had carers allowance until I started working some years ago as was told couldn’t get it while working/she was in full time education.She gets PIP, I am her appointee. Has EHCP.

Lindypops56
Lindypops56 in reply to AES71

Your social worker should be helping you to navigate this....

AES71
AES71 in reply to Lindypops56

Thank you. I have contacted her social worker now who has been amazing. Given me lots of information and will contact GP if I can’t get anywhere in the meantime.

NSZMER
NSZMER in reply to AES71

Whilst carers allowance may have ceased you should still have what's called underlying entitelement. Speak to carers all. Dept.to get them to a knowledge you are entitled to have carers credit which is noted against your NI .plus then they could send you z letter stating altho you don't receive benefit you are a carer. I believe it's worth doing as gaining NI credits counts towards your pension

Not sure of your location or details but suggest request carer's assessment from local authority and contact carers group?

Not sure how to help but can only suggest what I might do. My son was born in the 70’s and is now 46. He went to special school till he was 19, saw various people during this time but never had anything on paper. During his school life and young adult life decisions were made by the “professionals “ and didn’t really involve me. I became a single parent when he was 5 years old with no real support from anywhere else, apart from my parents when they were alive. In October 2014, which is just over 5 years ago I took him to the drs due to his increasing anxiety. She referred him to the Community Learning Disabilities Team and to cut a long story short he was assessed over time by an educational psychologist and assessed as having severe learning disabilities with a Full Scale IQ of 47. The results of all tests are on paper with conclusion and recommendations. This written evidence has proved invaluable in getting people to sit up and listen. Previously social workers etc would come and go as his abilities were overestimated due to the strength in his verbal skills. Things are still difficult but what I’m saying is written evidence from various “experts “ has certainly helped us to some degree.

AES71
AES71 in reply to 49Twister

Thank you. Am contacting her social worker as we speak!Really appreciate your comments.

As above the Community Team for people with Learning Disabilities should be able to help you, my son who is 19 was added to the severe LD register through them x

These posts resonate so much, thank you all for sharing. I have a 29yr old daughter with moderate LD, hemiplegia (CP) and Autism. I am a key worker three days a week so she has PA support on those days. We have done everything to try and shield her although she doesn’t appear on any vulnerable list. The thought of her becoming ill and ending up in hospital is so scary, the statistics for mortality in young adults with LD is appalling. The vaccine guidelines are so confusing. The latest thing I’ve been able to find - Clinical group 3 “This includes individuals with cerebral palsy, severe or profound learning disabilities” I don’t know if they will recognise her hemiplegia as CP or consider it severe enough when moderate LD is not recognised at putting people at higher risk.

Skye_Bear
Skye_BearExpert

Good Morning,

I think I may responded to you on Facebook regarding this, I would prefere to get you on waiting list to speak to one of our Information & Advice Officers who can look into this further for you.

Did you see Sarah's post here to a similar question?

healthunlocked.com/mencap/p...

Lyndsey M

I have responded to the message you sent me via Facebook, thank you.

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