UK coronavirus rules relaxed for people with autism and learning disabilities

Policy updated after lawyers challenge ‘discriminatory’ lockdown measures

People with learning disabilities or autism can leave the house for exercise more than once a day and can travel outside of their local area under current lockdown measures, the government has said.

The guidance, which had previously stated that non-essential workers should only leave their homes once a day for exercise or to shop for basic necessities, was amended on Wednesday.

The updated advice reads: “If you (or a person in your care) have a specific health condition that requires you to leave the home to maintain your health – including if that involves travel beyond your local area – then you can do so.

“This could, for example, include where individuals with learning disabilities or autism require specific exercise in an open space two or three times each day – ideally in line with a care plan agreed with a medical professional.”

Although those with autism and mental health conditions are advised to limit their travel, and stay as close to their local area as possible, carers and support workers who do not live in their household can accompany them.

The change comes after lawyers from Bindmans LLP and 39 Essex Chambers were asked for help by two families with children on the autistic spectrum.

Bindmans said one of the children, whose conditions mean it was necessary for them to leave the house more than once a day for their wellbeing, was deliberately taken to a quiet location outside of their local area because of their particular needs.

The firms argued that the “inflexible policy”, which also says people should stay two metres apart from anyone outside of their household, disproportionately impacted those with certain health conditions and was “therefore unlawful and discriminatory”.

After the amendment was made to the guidance, one of the affected families said they were “delighted” they could support their son’s needs “without breaking the rules”.

A spokesperson for the Cabinet Office said the most important action the public could take during the pandemic was to stay home to prevent the spread of Covid-19.

But, it added: “We understand that this will be more difficult for some, that is why we clarified the guidance regarding the needs of those with specific health conditions such as learning disabilities or autism.”

https://www.theguardian.com/world/2020/apr/14/uk-coronavirus-rules-autism-learning-disabilities-lockdown

Coronavirus: U-turn on critical care advice for NHS amid fears disabled people will be denied treatment

‘Many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that’

Shaun LinternHealth Correspondent @ShaunLintern
Wednesday 25 March 2020

Emergency guidance to help doctors decide who should get critical care during the coronavirus outbreak is being urgently re-written after a U-turn by a national health watchdog over fears it could mean disabled people are denied treatment.

The National Institute for Health and Care Excellence (NICE) had been threatened with legal action for telling doctors they should assess patients with learning disabilities, autism and other limiting conditions as scoring high for frailty.

But, following complaints from families and campaigners, NICE has said it will reissue its guidance.

NICE’s national guidance for the NHS, published on Friday, advised doctors on how to choose who gets life-saving intensive care treatment such as ventilation in the event of critical care services being overwhelmed during a surge of Covid-19 patients.

It included a frailty score that told hospitals to “assess all adults for frailty, irrespective of age and Covid-19 status” using a nine-point frailty scoring system with people “completely dependent for personal care, from whatever cause” scoring seven.

Anyone scoring higher than five was said to have uncertainty around the benefits of critical care.

Despite NICE accepting the guidance is wrong, at the time of publishing, it had yet to remove the incorrect documents from its website.

Peter Todd partner at Hodge, Jones and Allen solicitors, wrote to NICE on Tuesday demanding the guidance was withdrawn and that it made clear the original documents were wrong.

He told The Independent: “The guidance is still published on the NICE website and says that clinicians should comply with it. It would be better if they took it down and amended it before it was published again.

“You could be totally forgiven as a doctor for thinking this was still a valid policy, but they have already accepted they have made a major blunder.”

He explained that, as the guidance is currently worded, it meant young people with disabilities, autism or other mental health problems “have been classed as not to be offered critical care if required and that seems to be discriminatory and I don’t see how it can be justified. I think it is also a breach of the Human Rights Act.

“If they made clear doctors should not apply this frailty score to anyone who has autism or learning disabilities that would help, but it needs to be emblazoned on the policy. What I asked them to do was to unpublish the guidance and put a notice up to say it had been withdrawn and to consult first and republish it properly amended.”

Julie Newcombe, co-founder of Rightful Lives and whose son Jamie has autism said: “The original guidance was quite simply frightening. For a long time now, many autistic and learning disabled people and their families have believed that they are treated as less than human, and it certainly felt as if the guidance was confirming just that.

“The hastily put together clarification is welcome, but I still wonder how that will translate on the ground given that attitudes in some areas are so entrenched.”

Edel Harris, chief executive of the learning disability charity Mencap, also criticised the guidance saying: “People with a learning disability and their families are deeply troubled that the latest NICE guidance for NHS intensive care doctors could result in patients with a learning disability not getting equal access to critical care and potentially dying avoidably.

“These guidelines suggest that those who can’t do everyday tasks like cooking, managing money and personal care independently – all things that people with a learning disability often need support with – might not get intensive care treatment.”

He added it was vital NICE made clear patients should not be assessed for critical care based on their cognitive abilities.

A spokesperson for NICE told The Independent it was very aware of the concerns.

They added: “Our new Covid-19 rapid guideline on critical care was developed to support critical care teams in their management of patients during this very difficult period of intense pressure.

“The guideline says that on admission to hospital, all adults should be assessed for frailty, and that other comorbidities and underlying health conditions are also taken into account.

“The frailty scoring system is not perfect, therefore we recommend that clinicians should take any decisions about care in conjunction with patients and their carers where possible.

“We welcome the recent clarification that the Clinical Frailty Score should not be used in certain groups, including those with learning disability or with stable long-term disabilities such as cerebral palsy, which we will reflect in an updated version of our guideline.”

https://www.independent.co.uk/news/health/coronavirus-nhs-treatment-disabled-autism-nice-covid-19-a9423441.html

Blue badge parking permits to cover ‘hidden disabilities’ in England

Blue badge parking permits are to be made available for people in England with “hidden disabilities” such as autism or mental health problems.

The Department for Transport said people with non-physical disabilities would have an equal right to free parking from next year.

Currently the rules do not explicitly exclude hidden disabilities, but councils’ interpretations can vary.

Similar changes have come into effect in Scotland and Wales.

When the changes to the blue badge scheme in England are introduced, they will extend eligibility to:

people who cannot make a journey without “a risk of serious harm to their health and safety” or that of others, such as young children with autism
people for whom travel causes “very considerable psychological distress”
and those with considerable difficulty walking, meaning “both the physical act and experience of walking”
About 2.4m disabled people in England currently have a blue badge.

The scheme, first introduced in 1970, allow holders to park for free in pay-and-display spaces and for up to three hours on yellow lines.

The badges cost £10 and in London they also provide an exemption from the congestion charge.

Thousands share invisible disabilities
Transport Minister Jesse Norman said: “Blue badges are a lifeline for disabled people, giving them the freedom and confidence to get to work and visit friends independently.”

The change follows a consultation launched in January which saw 6,000 responses.

Three in four disabled people say they would go out less often without the parking permit, the DfT said.

‘Overwhelming anxiety’
Jane Harris, director of external affairs at the National Autistic Society, said the change would “make a massive difference to the lives of many of the 600,000 autistic people in England, and their families”.

Many autistic people experience major challenges in travelling, making detailed preparations and suffering “overwhelming anxiety” about things going wrong, she said.

She said that some can be unaware of the dangers of the road while others can feel panic in busy or loud environments.

Scotland and Wales have already changed their eligibility criteria for the Blue badge scheme to include some mental impairments, where people cannot follow the route of a journey without assistance, but the rules are yet to be altered in Northern Ireland.

https://www.bbc.co.uk/news/uk-44993036

What is the secret to being more assertive? Having self respect

By Christian Jarrett

Why are some of us more inclined than others to stick up for ourselves, not aggressively, but assertively. Assertive people let others know when they feel mistreated and they’re confident saying “no” to unwanted demands.

Presumably it has to do with how see ourselves, yet past research has established that two key aspects of the self-concept – good feelings about the self (“self-liking” or “self-confidence”) and seeing oneself as competent – are not strongly related to assertive behaviour.

Daniela Renger, a researcher at the Institute of Psychology at Kiel University in Germany, believes this is because most relevant to assertiveness is self-respect – “a person’s conviction that they possess the universal dignity of persons and basic moral human rights and equality”. Across three studies published in Self and Identity, Renger shows that self-respect is a distinct psychological concept and that it is uniquely correlated with assertive behaviour.

For her studies, Renger devised a new, four-item self-report measure of self-respect. Participants rated their strength of agreement with:

In everyday life I always see myself as a person with equal rights
I always see myself as a person of equal worth compared with other people in my life
I am always aware that I have the same dignity as all other human beings
If I look at myself, I see a person who is equally worthy compared with others

In an initial study, 343 women and men in Germany (average age 33) completed this measure, plus questionnaires tapping their self-competence (e.g. “I am almost always able to accomplish what I try for”) and self-confidence (e.g. “I look at myself with warmth and affection”; “It is always worth taking good care of myself”). They also completed an 8-item measure of assertiveness, for example saying whether they would feel comfortable “telling a companion you don’t like a certain way he or she has been treating you”. Nearly a hundred of the participants completed these same questionnaires again nine months later.

Based on her analysis of the participants’ answers to the various measures, including  the correlations within and between them, Renger concluded that self-competence, self-confidence and self-respect are distinct aspects of the self-concept. Also, while all three factors correlated with assertiveness, only self-respect had a unique association with assertiveness when accounting for the other two factors. Finally, there was some tentative causal evidence: having greater self-respect at Time 1 correlated with increased assertiveness as measured 9 months later, but the reverse was not true (having greater assertiveness initially was not associated with increased self-respect).

What is the secret to being more assertive? Having self respect

DWP presentation on ESA plans ‘confirms worst fears’ about green paper

Ministers have been accused of ignoring a public consultation and ploughing ahead with plans that will make their “fitness for work” testing regime even more stressful and unfair for sick and disabled people.

A presentation delivered by two senior Department for Work and Pensions (DWP) civil servants earlier this month suggests that ministers have decided – as many disabled activists feared after the publication of last year’s green paper – to introduce new benefit sanctions for sick and disabled people with the highest support needs.

The presentation at a DWP “Operational Stakeholder Engagement Forum” appears to confirm that the government had decided how it would reform the system of out-of-work disability benefits before its “consultation” process had finished on 17 February.

The government had claimed that it wanted to make the work capability assessment (WCA) less of an ordeal for claimants, with work and pensions secretary Damian Green telling last October’s Conservative party conference he wanted to support those disabled people who cannot work, and “sweep away unnecessary stress and bureaucracy which weighs them down”.

But slides from the presentation appear to show that his new regime will be even harsher, and that many employment and support allowance (ESA) claimants with the highest support needs and barriers to work will for the first time face having their benefits sanctioned if they do not co-operate with the regime.

The slides show DWP has already begun introducing a compulsory, face-to-face “health and work conversation” (HWC) with a jobcentre work coach that will apply to nearly all new claimants of ESA, weeks or even months before they go through the WCA process to decide whether they are not fit for work and eligible for the benefit.

The presentation says that “vulnerable” claimants will not have to take part in the face-to-face HWC.

A DWP spokesman has told Disability News Service (DNS) that work coaches will be “issued clear guidance on who will be exempted from the HWC” and “will also be able to defer the HWC if the claimant cannot attend due to temporary circumstances”.

But disabled activists have warned that these decisions will be taken by non-medically trained civil servants.

The slides say: “Currently Jobcentre staff do not routinely engage with ESA claimants before the Work Capability Assessment (WCA) which can take place many months into the claim.

“We know that the start of the claim can be a challenging time for claimants and that the longer a claimant is on benefit, the more difficult it is for them to move into employment where appropriate.

“The Health and Work Conversation (HWC) will provide this early support to claimants.”

The presentation said the HWC – which it claimed was co-designed with some disabled people’s organisations – will draw on “behavioural insight techniques and research” to “develop voluntary action plans” and help claimants “move closer to the workplace”.

And it said that all new ESA claimants would have to sign a new “ESA Claimant Commitment”, which would “set out the expectations and legal requirements that claimants will be required to accept in order to receive ESA”.

http://www.disabilitynewsservice.com/dwp-presentation-on-esa-plans-confirms-worst-fears-about-green-paper/

Tories ‘shifting the goal posts’ on disability benefit entitlements, say Labour

Government has rewritten the law to deny higher benefit payments for more than 150,000 disabled people.

Callous Tory ministers have been accused of “shifting the goal posts” on disability benefit entitlements, after it was revealed that the UK Government has rewritten the law to deny higher payments for more than 150,000 disabled people.

Two social security tribunal cases resulted in the government being told to ensure more disabled qualify for Personal Independence Payments (PIP), which would better recognise how their condition affects their ability to live as independently as possible.

PIP consists of two separate components – a daily living component and a mobility element – each paying a standard or enhanced rate, with the enhanced rate paying more than the lower rate.

Claimants are awarded points in each component, depending on how their disability or long-term illness affects them on a daily basis, through an assessment system campaigners have likened to a “tick-box exercise”.

A minimum of eight points are required to qualify for the standard rate of each component, while claimants need to secure at least 12 points for the enhanced rate.

The first tribunal said those who experience “overwhelming physical distress” when outdoors alone, a common and debilitating symptom of severe psychological disorders that can leave sufferers trapped in their homes, should be awarded more points for the PIP mobility component.

An estimated 143,000 sick and disabled people would have benefitted from the ruling, with around half of these qualifying for the enhanced higher rate of £57.45 per week.

The other half would have qualified for the standard rate, currently £21.80 a week. A further 21,000 would have been moved from the standard to the enhanced rate.

A second tribunal said more points should be awarded in the daily living component for those who need help taking medication and monitoring their condition. More than 1,000 people would have benefitted from this decision, if the DWP had accepted it.

The DWP argued that adhering to the tribunal’s recommendations would cost the department an extra £3.7bn by 2022, the Daily Mirror reports.

So rather than accepting the Tribunal’s recommendations, and recognising how those affected incur extra costs as a direct consequence of their illness or disability, the DWP has instead decided to rewrite the law – yes, you read that correctly – thus denying tens of thousands of sick and disabled people the additional financial support they desperately need.

Labour’s Shadow Work and Pensions Secretary, Debbie Abrahams MP, blasted the decision: “Instead of listening to the court’s criticisms of PIP assessments and correcting these injustices, this government have instead decided to undermine the legal basis of the rulings”, she said.

Abrahams added: “This is an unprecedented attempt to subvert an independent tribunal judgement by a right-wing government with contempt for judicial process.

“By shifting the goal posts, the Tory Government will strip entitlements from over 160,000 disabled people, money which the courts believe is rightfully theirs. This is a step too far, even for this Tory government.”

http://www.welfareweekly.com/tories-shifting-the-goal-posts-on-disability-benefit-entitlements-say-labour/

Brain scans could identify babies most at risk of developing autism, study shows

Images revealed which infants would go on to have an autism diagnosis, raising hopes for earlier care and interventions for those affected.

Babies who are most at risk of developing autism as toddlers have been identified from brain scans in the first year of life.

The images helped doctors spot which of a group of children who were already at risk because of autism in the family would later be diagnosed with the condition.

The work raises hopes that affected children could be helped with earlier specialised care and interventions to help their social abilities before any behavioural symptoms start to appear.

Scientists studied 106 babies, all of whom had an older brother or sister with autism, and found that telltale features in brain images taken at six and 12 months revealed which infants would go on to have an autism diagnosis.

The technology is not ready to use in clinics, but researchers who took part in the study believe it lays the groundwork for a tool that can predict autism in high-risk babies before their first birthday.

“We don’t have such a tool yet, but if we did, parents of high-risk infants wouldn’t need to wait for a diagnosis of autism spectrum disorder at two, three or even four years,” said Annette Estes, a co-author on the study and director of the University of Washington in Seattle. “Researchers could start developing interventions to prevent these children from falling behind in social and communication skills,” she added.

About one in 70 children in the UK develops autism, but among those with a diagnosed sibling, the risk of the condition can rise to about one in five. The test has not been tried on children who are not at high risk.

Writing in the journal Nature, the scientists describe how they compared brain scans of high-risk babies with those from 42 low-risk children who had no siblings with autism. On each lab visit, scientists assessed the children’s behaviour and intellectual abilities.

The images, taken as the babies slept, revealed that high-risk infants who developed autism experienced a “hyperexpansion” of the brain’s surface in the first year of life. The unusual growth preceded a rise in brain volume over the following year that was linked to social difficulties the children developed.

The scientists next used a machine learning algorithm to predict from the scans and the infant’s sex which high-risk children would be diagnosed with autism at the age of two. The computer identified eight in 10 of those who developed autism. In about 3% of cases, it predicted autism that did not appear.

https://www.theguardian.com/society/2017/feb/15/brain-scans-could-identify-babies-most-at-risk-of-developing-autism-study-shows