The National Autistic Society is celebrating its 50th anniversary next year.

As ambassadors and champions, you’re best placed to tell everyone in your area all about our anniversary, how attitudes towards autism have changed over the last 50 years and what’s needed now. So why not help raise awareness by writing a letter to your local newspaper.

Click on this link to find out how you can help promote this landmark event: http://www.autism.org.uk/get-involved/campaign-for-change/get-involved-in-campaigning/autism-action-network/what-you-can-do/50th-anniversary.aspx

 Mithran Samuel, reporting for Community Care.co.uk, wrote this recent

article about the Supreme Court preparing to rule on councils’ right to

to limit care funding. He writes:

The Supreme Court is to rule on councils’ right to take resources into account in determining the levels of care they will fund for users in a case that could have significant implications for social care funding.

It concerns a severely disabled service user, KM, who was awarded a direct payment worth £85,000 a year by Cambridgeshire Council, despite an independent social worker calculating that it would cost £157,000 to meet his needs and the council agreeing with this practitioner’s assessment of his needs.

KM has learning disabilities, was born with no eyes, has several health conditions and an autistic spectrum condition.

Seven judges will hear an appeal by KM against the decision, brought on the basis that the council did not give adequate reasons for its decision and failed to meet its duty to provide for his care needs. The court will rule on several significant issues around the funding of care:

• How far councils can take their resources into account when they assess someone for social care and provide for their needs.
• Whether resource allocation schemes are a legitimate way of determining funding for individuals.
• The level of explanation councils should provide for the sum awarded through a RAS.
• Whether Cambridgeshire’s decision was irrational on the grounds that the amount awarded was “manifestly insufficient” to meet KM’s needs.

Health secretary Andrew Lansley has intervened in the case because of its wider significance. “The issues raised are fundamental to the way councils decide who is eligible for care and support and that is why the secretary of state has intervened,” said a Department of Health spokesperson.

Four charities – Sense, the National Autistic Society (NAS), the Royal National Institute for Blind People and Guide Dogs for the Blind – have also intervened in the case in a bid to overturn the current position which allows councils to take resources into account.

“This is potentially the biggest community care case for 15 years,” said Alex Rook of law firm Irwin Mitchell, which is representing the four charities.

NAS chief executive Mark Lever raised concerns about the use of resource allocation systems.

“We think local authorities must be transparent about how they allocate funding to disabled individuals,” he said. ”Without transparency there is a real danger that the reasoning behind a monetary award will be based on a “computer says so” system rather than a fair assessment of an individual’s needs.”

The case will be heard today and tomorrow, though a ruling may not be made for several months. The council has declined to comment until judgement is made.

Shiv Malik, reporting for the Guardian, has written this stand-out

article about disabled people facing prospects of unlimted unpaid

work or benefit cuts. He writes:

Some long-term sick and disabled people face being forced to work unpaid for an unlimited amount of time or have their benefits cut under plans being drawn up by the Department for Work and Pensions.

Mental health professionals and charities have said they fear those deemed fit to undertake limited amounts of work under a controversial assessment process could suffer further harm to their health if the plans go ahead.

Dan Parton, editor for Learning Disabilty Today, wrote this article

about the Metropolitan Police signing up to the Mencap “Stand by me”

campaign. He writes:

The Metropolitan Police Service (MPS) has signed up to learning disability charity Mencap’s ‘Stand by me’ campaign, as part of its on-going commitment to tackle all forms of hate crime.

Mencap’s ‘Stand by me’ campaign calls on police services to commit to a promise to ensure people with a learning disability can live their lives free from the fear of hate crime.

As many as 9 out of 10 people with a learning disability suffer verbal harassment or violence due to their disability, according to Mencap.

This is the latest commitment from the MPS as it seeks to improve the way it tackles hate crime. All 32 London boroughs have a dedicated Community Safety Unit with more than 500 specially trained officers across the MPS who investigate hate crime.

Commander Steve Rodhouse, of the MPS, said: “The Met is committed to tackling all forms of hate crime and recognises the significant impact disability related harassment and crime has on communities.

“We know under reporting of hate crime is a significant issue and we are resolutely committed to tackling all forms and categories of these offences.

“We work with our partners and other organisations to inform our current policies, staff training and operating procedures and I am very proud of the work we have achieved so far, but of course there is more we can do.

“We are committed to fulfilling all 10 points of the charter and we are working with Mencap, disabled people’s organisations and our Disability Independent Advisory Group to further develop how victims can best be supported and to enhance their trust and confidence in the Metropolitan Police.”

Mark Goldring, chief executive of Mencap, added: “We welcome the support of the UK’s largest police force in ensuring that all victims of disability hate crime receive appropriate support and access to justice and we urge all police forces to sign up to our ‘Stand by me’ campaign.

“Hate crime is a serious issue for disabled people and their families. Without the full support of the police many disability hate crime victims have been left to suffer in silence.”

 Dan Parton, editor for Learing Disabilty Today, yesterday wrote

this interesting article about learning disabilty hate crimes being

the tip of the iceberg. He writes:

Figures released this week show an increase in the number of convictions for disability hate crime, but successful convictions throw light on only a tiny part of a much bigger problem.

First, the good news – it seems we’re getting a bit better at identifying and pursuing hate crime. The Crown Prosecution Service has revealed an increase in the number of disability hate crime convictions for the year 2010/11. At 579, the figure represents a 311% increase from the 141 made in 2007/8.

In addition, 79.8% of disability hate crime cases resulted in a conviction. This is the first rise in the proportion of convictions to cases in two years.

But all this is still just the tip of the iceberg. Only 690 cases were referred by the police to the CPS for a charging decision in 2010/11, yet about 9 in 10 people with a learning disability suffer verbal harassment or violence due to their disability, according to Mencap. Given the number of people with learning disabilities in the UK – about 1 million – the true scale of disability hate crime must far exceed the official figures.

Indeed, with public attitudes towards people with disabilities deteriorating, hate crime may continue to rise.

Sadly, many disability hate crimes still go unreported to the police. The reasons for this happening are well known. For instance, people are afraid that they will not be believed, that they will suffer retaliation, that they won’t  be supported, or that their impairment will be used against them. Some people with learning disabilities even just accept it as ‘part of everyday life’ and/or don’t recognise it as hate crime.

This needs to be challenged. The police are taking disability hate crime increasingly seriously – something they have been criticised for not doing in the past. Indeed, the Metropolitan Police Service announced this week that it has signed up to Mencap’s ‘Stand by me’ anti-disability hate crime campaign.

The high proportion of cases that result in a conviction – once they’ve made it to court – shows that, if people with a learning disability speak out, they will be listened to and, crucially – they will also get the justice they deserve.

Now, the emphasis needs to be on ensuring that people with learning disabilities know what hate crime is – that it is not part of everyday life; that they know how to report it and to whom; and that it is the responsibility of providers, support services and professionals to work with them on this issue.

That way, the number of successful convictions will continue to increase, and more people with learning disabilities will be free from the scourge of hate crime.

Dan Parton, editor of Learning Disabilty Today, yesterday

wrote this article about wills for the parents of learning

disabled children needing to be kept up to date. He writes:

Parents of children with learning disabilities should keep their wills up-to-date to ensure their loved one is properly provided for in the event of their death, a solicitor has warned.

Aari Gupta, learning disability charity Mencap’s in-house solicitor, said that incidents where an out-of-date will no longer provides for a child with a learning disability as well as it should have been on the increase in recent years.

Gupta made this warning after the publication of ‘When WILL You Change Yours?’ a report commissioned by Remember A Charity, a consortium of charities that encourage more people to consider leaving a charitable gift in their will, revealed that 29% of people with a will admitted that it is out of date and intend to change it.

“The Remember a Charity report highlights a growing problem for families with a child with a learning disability,” said Gupta. “Many people think making a will is all they need to do, but it is just as important to keep your will under review every few years or as and when family circumstances change.

“Parents who have made their wills and chosen to set up a trust for a child with a learning disability should continue to review details such as who they have appointed as trustee and if this person is still the most appropriate person.

“It is essential that people with a learning disability are cared for after a loved one is no longer around and this can only be done by ensuring a will is kept up-to-date.”

Mark Goldring, reporting for the Guardian, has today written

a revealing article about the NHS needing to accelerate its

treatment of learning disabled patients. He writes:

When Mencap published its Death by Indifference report in 2007 it sent shockwaves through the health sector. The study contained damning evidence that people with a learning disability were dying unnecessarily due to institutional discrimination in the NHS. Such was the strength of the report it triggered an independent inquiry and an investigation by the parliamentary and health service ombudsman.

Despite these welcome initiatives, five years on from the publication we continue to hear heartbreaking stories of unnecessary pain and death. These cases form the basis of our report published on Wednesday , Death by Indifference – 74 Cases and Counting, which looks at progress that has been made in the NHS. Sadly, it finds that the NHS has still not got to grips with treating people with a learning disability and is putting the lives of patients at risk.

This is illustrated by the case of Alan MacDonald, who died suddenly in Lister hospital, Hertfordshire, in 2009 after being admitted with stomach cramps. From the time MacDonald was admitted, his family felt that they had “to beg” staff to treat him, only to be met with what they described as “hostility”. In a society that prides itself on its universal healthcare system, such treatment is incomprehensible.

We know that regular health checks for people with a learning disability, training for healthcare staff and the appointment of specialist nurses greatly improve health outcomes. But, as our report shows, efforts to implement them have been slow and in some cases non-existent. Policy may have been changed but practice must follow.

For the most part, health professionals do an incredible job and want the best for each patient – we take heart that more than 200 healthcare organisations have signed up to Mencap’s Getting it Right charter – but where progress has been made, it has been patchy or has come about as the result of the avoidable death of a learning disabled patient.

At a time when the NHS is going through changes there’s a risk that the progress made will be lost, and the health needs and human rights of people with a learning disability left unheeded.

• Mark Goldring is chief executive of Mencap

Dan Parton, editor for Learning Disability Today, wrote this

revealing article about the study to investigate a link

between Down’s Syndrome and dementia.

A £1 million brain-imaging study has been launched to investigate why people with Down’s syndrome are at much great risk of developing Alzheimer’s disease than the general population.

Down’s syndrome is the only known disorder in which one can expect early-onset dementia to develop, and a team from the University of Cambridge is investigating why.

“Almost 100% of people with [Down’s syndrome] develop pathological signs of Alzheimer’s, and clinical symptoms are seen in [Down’s syndrome] around 40 years earlier than in the general population,” said Professor Tony Holland, from the Cambridge Intellectual and Developmental Disabilities Research Group, who is leading the study.

The research team is looking for people with Down’s syndrome to volunteer to take part in the study. The team has produced a short film – www.youtube.com/user/downsproject – to explain the testing process.

“People with [Down’s syndrome] are living longer lives, and better lives, but this can be a poisoned chalice, as with this comes a real risk of Alzheimer’s, ” said Professor Holland. “Now we need volunteers to come forward to help us explore what is happening to the brain.”

This 4-year study aims to determine the role of beta amyloid, a key factor in causing Alzheimer’s. People with Down’s syndrome may be more vulnerable to this type of dementia as they have more amyloid in their brains – a key amyloid gene is located on chromosome 21, which is triplicated in people with Down’s syndrome. Investigating amyloid in this way will also help understand Alzheimer’s development in the general population.

If you have Down’s syndrome or know someone with Down’s syndrome over the age of 30, who might be interested to hear more about this study, please contact either Tina (ta337@medschl.cam.ac.uk) or Liam (lrw34@medschl.cam.ac.uk)

Camilla Pemberton, reporting for Community Care.co.uk, wrote a interesting article about restraint victims seeking compensation.

Children who were unlawfully restrained in privately-run child prisons over a 10-year period could pursue compensation claims, according to a high court judge.

Passing judgement this week on a judicial review case brought by the Children’s Rights Alliance for England (CRAE), Mr Justice Foskett said the government was under no legal obligation to identify potential victims and notify them of their right to seek compensation – as CRAE had argued. However, he pointed out that victims could come forward themselves.

The judge said it was highly likely that large numbers of children were unlawfully restrained in privately-run secure training centres (STCs) for at least a decade between 1998 and 2008.

Restraint techniques involved included the controversial, and subsequently banned, nose distraction technique used on 14-year-old Adam Rickwood hours before his suicide in 2004.

Rickwood’s death at Hassockfield STC and the 2004 death, following restraint, of Gareth Myatt, 15, at Rainsbrook STC led to the discovery of information about unlawful restraint.

The judge said statutory agencies had failed to take appropriate action to stop the unlawful treatment, also criticising the Youth Justice Board (YJB) for its “apparent active promotion” of the methods, due to “confused thinking” until 2007.

He said the “fullest explanation” had not yet emerged as to why widespread unlawful restraint went unchecked for so long, and why there were apparently so few complaints from victims.

Mark Scott, a solicitor for CRAE, said he hoped the judgment would encourage children who were subject to unlawful restraints by STC staff to “come forward and seek redress”.

Carolyne Willow, CRAE’s national co-ordinator, said there could be “potentially thousands of former detainees of STCs being entitled to claim compensation for unlawful restraint. The violations went unchecked for at least a decade so the scale of claims could be enormous.”

But she warned victims would need to know they may have a claim. “Without action by the government we firmly believe former detainees will remain ignorant of their entitlement to seek justice. Unlawful restraint was so endemic that children detained at the time would have seen it as normal and legitimate. The professionals around them certainly did,” she said.

 Adrian O’Dowd, (pictured) a journalist  with ONMEDICA.com, has written an interesting  piece regarding the Care Quality Commission’s concerns over learning disability care. He writes: ’People with learning disabilities often have little say in their own care plans and do not have enough activities, according to the Care Quality Commission (CQC).

The regulator has published a further 20 reports from a targeted programme of 150 unannounced inspections of hospitals and care homes that care for people with learning disabilities. This programme is looking at whether people experience safe and appropriate care, treatment and support and whether they are protected from abuse. The latest batch of reports will feed into a national report of the entire programme, due to be published in the spring. Initial analysis of the existing reports, said the CQC, showed that many services were failing to provide patient-centred care, based on the individual needs of people using the services.

The 20 inspections covered locations that provided a range of services including assessment and treatment, rehabilitation and longer term care. Inspections were focused on two outcomes relating to the government’s essential standards of quality and safety – the care and welfare of people who use services, and safeguarding people who use services from abuse.

Bernadette Hanney, national project lead for the learning disability review said: “People must be placed at the centre of their care. We have found that too often people are not involved in the development of their care plans. And often those care plans lack detail about the person’s preferences, which can have an adverse impact on the quality of care provided.