Archives for posts with tag: autism

The UK is approaching a perfect storm with an ageing population and many people unprepared for the future

Former Liberal Democrat cabinet minister Ed Davey (centre) and campaigners protest against Theresa May’s social care policy during the 2017 general election campaign. Photograph: Justin Tallis/AFP/Getty Images

For a short while, it seemed like the issue of social care funding would finally be addressed after years of government procrastination. The Conservatives promised a consultation on social care reformU-turned on the so-called dementia tax and, instead, confirmed their intention to cap the amount people pay towards care.

But now that plans to introduce such a cap have been scrapped and the social care consultation is rumoured to have been delayed until next summer, it seems that the government has followed previous administrations and kicked social care funding into the long grass.

Such a decision is worrying and flies in the face of public opinion. A cap on care costs will increase the fairness of social care, so it’s risky to turn our backs on this idea without an alternative plan in place. There are too many vulnerable older people at risk.

Following an election campaign full of confusing messages about social care, Anchor, England’s largest not-for-profit provider of care and housing for older people, conducted a public poll to gather insight into people’s understanding. Our research found that 70% of British adults believe there should be a cap on social care costs, while almost half believe that social care – including dementia care – should always be paid for by the state.

Sir Andrew Dilnot, who first proposed a cap on social care, has cautioned that plans to abandon it could cause a “catastrophic risk” of poverty in older age. And councils have warned that they cannot afford to pay for all those in need of state-funded care if the dementia tax is introduced, putting many providers at risk of going out of business.

The question of how we fund social care remains unanswered, and the most recent suggestions fail to get to the crux of the issue.

Jackie Doyle-Price, the social care minister, suggested that older people should sell their homes to fund their care. But this doesn’t take the full picture into account. There is a perception that all or most older people are well-off and own their own home – this isn’t the case. For those older people who are home owners and are, to quote the minister, “sitting in homes too big for their needs”, we know that two thirds would like to downsize but can’t due to a lack of suitable options.

Again, this comes down to a lack of funding and supportive policies, despite the fact that more retirement housing could save £14.5bn to the public purse over 50 years.

Whichever direction the future of social care funding is heading, and whether a cap is introduced or not, the government must be open and honest about how social care will be paid for so that everyone can plan for the best possible life in older age. At present, this is far from the case.

More than a fifth of people wrongly believe the state pays entirely for care needs in later life, and more than half underestimate social care costs by up to 20%. Considering these misconceptions, it’s no wonder that just 14% of us are currently saving for our care in later life.

We’re approaching a perfect storm where the future of social care funding is unclear, the population is getting older, and most of us are unprepared for the future. We need a transparent and sustainable long-term strategy that integrates social care, health and housing. Recognising, and acting on this, is our only option.

  • Jane Ashcroft is chief executive of Anchor

Source: Social care funding can’t take any more setbacks. It needs reform now : The Guardian

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The system should be there to help, but in most instances it only hinders.

When things go wrong they blame the system and on the few occasions things go right the system is not mentioned as the success was not system based, but more likely it would be down to some good human intervention outside the ‘box’.

Unfortunately the processes do not get better as within in time, around age 14 years, transition will commence and that is another whole new venture which creates even more stress and tensions.

Then eventually you access adult social care, but again there is a system which in many aspects is not ‘fit for purpose’.

Unfortunately this is social care, education and health within the UK, hopefully it will improve, but I have been engaging with it for at least the last 40 years and I am still waiting. But then public bodies ate extremely slow to act.

I would suggest you try to find a good support group for at least you will then be with others who are experiencing the same.

I find you need to fight for everything and then occasionally you may see some light.

Teddie may well not be aware that he is different, but then we all are, it is just that some persons could be more different then others. But you need to come through for Teddie.

There are labels and I would suggest use them for your own and Teddies advantage, but be careful who you trust.

You will encounter many disappointments with the authorities, but you are not alone in this as this happens to all of us.

Life with a Bear

image1As the whole house was fast asleep last night (dogs included) I was wide awake annoyed about this letter we received!

Just short of a year ago Teddie was referred to CADU (child assessment & development unit) 11 months later we are still no further forward with no appointment in sight as the commissioning of the child Assessment & Development unit has temporarily been put on hold. 

How the hell can that be possible, how can children be made to wait that long only to be told the service has been put on hold because they want to make cuts, for a child to wait that long surely that shows a need for the unit??

I understand there is a process children have to go through in order to receive a diagnosis but why can’t the child’s paediatrician just be able to give a diagnosis, after all the referral has to come from them…

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I am Chris Sterry a family carer and one of the Carer reps on both Learning Disability Partnership Board (LDPB) and Learning Disability Service Improvement Forum (LDSIF).
Some of you may know me and some not, as some will be aware of LDPB and may be LDSIF.
The reason for this communication is that there has been for some months comments or discussions on the continuation of the LDPB both in its current form, some revision of its form or to even abolish the concept of LDPB altogether.
A meeting for the Reps of LDPB and LDSIF has been arranged on 4 October 2017 at St Mary’s Church in Sheffield, UK.
 Before I continue with this, please see below some information of the inclusion within LDPB and LDSIF.
Within the term LD this does include and/or Autism, although there are discussions on going in forming a separate Autism Partnership Board.
LDPB currently meets every two months, it is a Public meeting and therefore anyone can attend. It was formed under ‘Valuing People‘, which was ‘A vision for the 21st Century’, a White Paper presented in March 2001 and in Chapter Nine it laid down the provision of Partnership working by Partnership Boards which were to be established by October 2001.
There are a number of reps who are down to attend and these come to represent the following
Sheffield City Council
Sheffield Health and Social Care NHS Foundation Trust
Sheffield Teaching Hospitals NHS Foundation Trust
Sheffield Clinical Commissioning Group
Sheffield Healthwatch
LD Service Providers
Persons with LD
Carers of persons with LD
Sheffield Carers Centre
This Board used to meet every month, but approximately 2 years ago a recommendation, by Sheffield City Council, was put before the Board that the monthly meetings become 2 monthly and in the other months SIFS would be created, so in effect month by month there would either be a SIF or PB meeting. While there was no real objection to SIFs being formed there was to make the LDPB to 2 monthly from 1 monthly and it was the majority view of the LDPB members at that meeting to continue to meet monthly. Remember this was a partnership and all partners should be equal, but 1 partner, namely, Sheffield City Council (SCC) decided against the majority decision, so much for the partnership principle and democracy.
The various SIFs were created and for the LDSIF as well as the reps from SCC, reps from persons with LD and Carers of persons with LD could apply to be reps and if agreed by SCC then they could attend. This was not fully within the partnership principle and the meetings would not be Public meetings, so only the reps could attend or others as invited. The SIFs have not been created by Statute as was LDPB and is purely a decision by SCC.
Now SIFs are supposed to deal with operational issues while LDPB to deal with strategic issues.
There are a number of SIFs, in addition to LDSIF and these include
Carers, where I am also a Carers Rep
Adult
Mental Health
and possibly a couple more.
As I stated above regarding the discussions on the future of LDPB and in effect LDSIF a joint meeting has been arranged for the reps of both LDPB and LDSIF to attend and a copy of the invite is attached. For information this joint meeting is on Wednesday 4th October 2017 at St Mary’s Church from 11am to 2pm.
I will be attending as well as other carer reps and I do wish to know the views of others within Sheffield, whether they be LD Carers or not, but especially LD Carers and others within the LD community, be they persons with LD, LD Service Providers or any other connection with LD.
I have scanned the internet for information regarding Sheffield LD Partnership Board and although there appeared to be links they did not connect with any relevent information except for this from 2007 and this Help for People with Learning Disabilities. The first link is now 10 years old and the person who appears as the originator for the Foreword, Josie Bennett, who is no longer with Sheffield City Council and there goes another tale which I may proceed to mention some other time. Looking at the second link this appears to be more promising until you progress on the link and the get the message ‘Sheffield has a Learning Disabilities Partnership Board to help us make sure that we meet the needs of people with a learning disability in Sheffield. The Partnership Board meets every two months and is attended by family carer representatives, people with a learning disability, and representatives from agencies in the city who work with people with a learning disability.’ if you then follow that link you get Search Results (0). Now I would say that is not a very encouraging sign for the future of LDPB within Sheffield.
Please do advise your comments, do you agree with me or have your conclusions. LD Boards in other areas do appear to be active being Derbyshire, Nottinghamshire, Lincolnshire,York and current minutes are readily available, while for Sheffield no current information appears to be readily available.
I also facilitate a LD Carers Support Group at Sheffield Carers centre for which there is an email address being ldcarersbuttygroup@gmail.com, please could you direct replies, comments, etc to that email or to the FLASH (Families Lobbying and Advising Sheffield), of which I am also a member, email being flashld575@gmail.com.
I do look forward to hearing from, as do my fellow reps, especially in these times of change, uncertainty and austerity, not on just the uncertainty regarding LDPB and LDSIF, but any aspect of relating to care. I repeat the 2 emails where comments are encouraged to be made being flashld575@gmail.comor ldcarersbuttygroup@gmail.com or you could come to the LD Support group which is held every 4th Tuesday of each month at the Carers Centre from 12 noon to 2pm, please bring a Butty (Sandwich) drinks tea, coffee, water are providing.
The website of the support group is ldcarersbuttygroup
Thank you
Chris Sterry

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Men and women both transmit an increasing number of new mutations to their children as they age.

Source: Parental age ups rate of new mutations passed to children | Spectrum | Autism Research News


Today we met the mum of a 12-year-old boy with a facial disfigurement who was furious after Instagram took down a photo of him after someone was thought to have reported it.Charlie Beswick, from Stoke-on-Trent, blogs about life with her twin boys Harry and Oliver. Harry was born with Goldenhar Syndrome, which means he has no left eye, eye socket, nostril, or left ear and a short jaw. He also has Global Development Delay, autism and is non verbal.Last week, Charlie posted a picture of Harry without his prosthetic eye and it was removed two days later. She received a message from Instagram telling her it didn’t adhere to community guidelines.

Source: Mum’s fury after Instagram picture of her son’s face is removed | News | Good Morning Britain | GMB


I knew there was something my child was struggling with, and all I had to do was understand what his behavior was telling me.

Source: When I Realized Why My Son Melts Down At Home But Not At School | HuffPost


Children with social (pragmatic) communication disorder (SCD) have the same features as children with autism – they just have fewer of the features.

Source: New diagnosis covers ‘borderlands’ of autism spectrum | Spectrum | Autism Research News


Perfectly Peter

When it seems as though the world will burn itself into oblivion with hatred and bigotry, I look at my son and think, “Thank God he doesn’t know.”

He doesn’t know that citizens of our own country can turn against one another in an instant, like wild animals. He doesn’t know violence. He doesn’t know evil. He doesn’t know racism, prejudice, discrimination.

He is not aware that these blights on our society exist.

I turn away from the horrifying media images and look at him. A perfect, innocent soul incapable of hatred.

He may never be aware. He may never know.

And today, I thank God for that.

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Ace News Services

#AceNewsReport – Aug.12: #UK Bullies leave plank of wood nailed to 9-year-old boy’s head after throwing it at him #AceNewsDesk reports

Graphic Images on sitehttps://t.me/acebreakingnews/2973http://pic.twitter.com/HLRk2pf8kg— PIX11 News (@PIX11News) August 12, 2017 #AceNewsDesk

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A social worker discusses the obstacles she faces in securing specialist care for people with autism

Source: ‘I feel embarrassed about the delays in getting care packages’

SouL SpeakS

He started Writing, The paper started speaking...

Letters of hope from the soul

I'm a sinner saved by Christ and I struggle. This is simply a blog about the struggle that I have. I am hoping it will someday be a blog about how I overcame my struggle with depression and suicidal ideation. (Cause if not that's gonna suck.)

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Live in Victory & Abundance

"Start Winning in your Today."

Govt Newspeak

Just a pleb exposing the cruelty of Neoliberal Governments

Recoup and Conquer

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LD Carers Butty Group

A support group for carers of persons with Learning Disabilities and/or Autism in Sheffield UK

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The Godly Chic Diaries

Smiling • Writing • Dreaming

Life with a Bear

Special needs, Complex needs, Non-verbal, wouldn't have him any other way!

Barbra Dozier's Blog

Just another WordPress.com weblog

Charlene Bullard

Believer, Mother, Educator, & Writer

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