Will you always be able to reach your bedroom?

We are all TABs (Temporarily Able Bodied) As we get older we are likely to have mobility problems; almost 1 in 2 people over 65 in the UK could be considered to have a disability. But we are not building houses that will meet the needs of an aging population. Three-quarters of people with mobility problems are unsuitably housed, with five million now needing disabled-friendly homes.

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Leonard Cheshire Disability, a leading charity, is calling for all new homes to be built with wider doors and walls strong enough to take grab-rails.
Leonard Cheshire Disability claims that as many as five million people now need a disabled-friendly home, a number set to rise as the population ages. A survey for the charity’s Home Truths campaign finds that almost three-quarters of people with mobility problems do not have an accessible door into their building. More than half say their buildings do not have doors and hallways wide enough for a wheelchair.
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The report cites the example of Sue Frier, a wheelchair user. Unable to get upstairs, she has been confined to the ground floor of her house, sleeping in her lounge and washing at her kitchen sink. Once a week she pays to have a bath at a Leonard Cheshire care home. She cannot use her garden because her housing association refuses to provide a ramp.
“Not adapting homes condemns people to the misery of Victorian strip washes and ultimately possibly to leaving their homes and incurring massive care costs, when they would prefer to live independently,” said Clare Pelham, the charity’s chief executive. Of those people with mobility problems, more than half say they find it difficult to sleep in their bedrooms, while one in five say they find it very difficult to use their stairs.
Leonard Cheshire Disability is calling for all new homes to be built to “Lifetime Homes Standards”, with wider doors and walls strong enough to take grab-rails. It also wants 10% of all new homes to have full wheelchair accessibility standards and a commitment from all political parties that any new settlements, such as the planned garden cities, are built with disabled-friendly housing.
The number of disabled people in the UK has risen from 10.1 million in 2003 to 12.2 million in 2013. There are currently around 1.2 million wheelchair users in the UK, a number is expected to increase.

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A recent report by Habinteg and South Bank University estimated that there was an unmet housing need for wheelchair users in England of almost 80,000 homes.

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Assisted Dying: a merciful release or legalised murder?

What are your views? Are there different issues for people with disabilities?

Many people in the UK advocate a change in the law on assisted dying. They believe that, subject to strict upfront safeguards, the law should allow terminally ill, mentally competent adults to request life-ending medication from a doctor. The dying patient would then have the choice to self-administer that medication at a time that was right for them.
It is believed that the change in the law on assisted dying would not lead to more deaths, rather it would lead to less suffering for those dying people who want the choice to control how and when they die.
This change is reflected in Lord Falconer’s Assisted Dying Bill which had its First Reading in the upper house of the UK parliament, the House of Lords on 5 June 2014. The principles of the Bill will be debated, and possibility voted on, for the first time when the Bill receives its Second Reading on Friday 18 July.

A recent YouGov poll found 73% of adults in England and Wales support the proposals in this Bill.

Summary of the Assisted Dying Bill
The Assisted Dying Bill is a specific, focused piece of legislation based on a recognition – repeatedly expressed by the courts – that the issue is one for Parliament to address. A change in the law that every opinion poll has shown is supported by an overwhelming majority of the public.

You can view the Bill in full and track its progress on Parliament’s website here.
If enacted it would:
• Result in fewer dying adults – and their families – facing unnecessary suffering at the end of their lives, subject to strict upfront safeguards, as assessed by two doctors.
• Bring clarity to an area of the law that is currently opaque and thereby provide safety and security for the terminally ill and for medical professionals.
• Neither legalise voluntary euthanasia, where a doctor directly administers life-ending medication nor act as a slippery slope to do so.
• Protects anyone who doesn’t have a terminal illness, including elderly and disabled people, by not in any way affecting the law that makes it a criminal offence to assist ending their lives.
• Above all it will give dying adults peace of mind that the choice of assisted dying is available if their suffering becomes too great for them in their final months of life.
• Without a change in the law, terminally ill patients will continue to take decisions without adequate safeguards, whether by travelling to Dignitas, in Switzerland, to die, ending their lives themselves or being illegally helped to die by doctors.

Impact of the Assisted Dying Bill
The Bill draws on the experience of Oregon’s Death with Dignity Act. This law has been in force for 17 years and has enabled a small number of people who were terminally ill to request the choice of an assisted death. In practice only a very small number of patients have an assisted death – less than 80 in total in 2013 out of the annual 30,000 deaths in Oregon. There has been no evidence of abuse since its inception.
The Assisted Dying Bill would:
• Provide safeguarded choice and control to terminally ill adults and prevent prolonged suffering among these dying adults who want to have choice over how and when they die.
• Ensure that terminally ill adults who have assistance to die do so having met clear pre-determined criteria and have explored all their alternatives; rather than as at present, in secret, when checks are only made after someone dies (as set out in the prosecuting policy on assisted suicide).

The Assisted Dying Bill would not:
• Legalise assisted suicide for people who are not dying (for example disabled people or older people).
• Legalise voluntary euthanasia where a doctor administers the life-ending medication. Under the Assisted Dying Bill the person choosing an assistance to die would self-administer the prescribed life-ending medication.
• Legalise a system where the person being directly helped to die is no longer competent to make that choice for themselves. This Assisted Dying Bill would only apply to adults with mental capacity both at the time of their request and at the time of their death.

It’s time to make hate crime against disabled people more visible

Hate crimes against people with disabilities are widespread and often involve extraordinary levels of sadism. The first step in combating these shameful incidents is an acknowledgment that they exist. They are often unacknowledged and unreported.

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In Scotland a disabled man who has twice been the victim of serious assaults has urged other hate crime victims to be brave and go to the police.Stephen Cruickshank, 56, was tipped out of his wheelchair and kicked and spat on in separate terrifying attacks.The ex-pub boss admits he did not report the incidents because he was so traumatised.

Stephen suffers from spinal neuropathy and he struggles to walk, relying on his wheelchair to get around.
Last year a group of thugs tipped him out and ran off with his chair as he lay helpless on the pavement in Rutherglen, Glasgow.
In another incident, he had his walking sticks kicked away by a group of men who then kicked and spat on him while Christmas shopping.Workmen came to his rescue and urged him to contact police – but he refused and headed home.

Four years ago, Stephen got a severe kicking in Glasgow city centre as he struggled into town to buy Christmas presents for his wife Morven and daughter Hayley, now 10.“The attack was so vicious, I thought I’d never get up again.”
But now Stephen, who’s involved in a Police Scotland-backed scheme aimed at helping hate crime victims, says it’s time to take on the bullies.

Earlier this month it was revealed that there had been a 12 per cent increase in the number of reported crimes against the disabled.
But Stephen claims that many more incidents go unreported.
He reckons only one in five disability hate crimes are ever investigated by police. “The scandal here isn’t the increase, it’s the fact that so few of us report these crimes.
“I talk to so many disabled people across Scotland and there are lots of reasons why they don’t report crimes committed against them.
“People are scared of reprisals because often their abusers aren’t strangers.“Disabled people can be victimised by their friends, or even family members.”

Stephen now works at a Third Party Reporting initiative, which is backed by Police Scotland.
Helpers submit reports of hate crime to police on the victim’s behalf.
Stephen spends several days each week supporting other disabled people.

In the USA in February 2010, Jennifer Daugherty, a 30-year-old, mentally challenged woman from Greensburg, Pa., was brutally people pretending to be her good friends. Holding her hostage for days, the perpetrators allegedly tortured her, shaving her head, binding her with Christmas decorations, beating her with a towel rack and vacuum cleaner, feeding her detergent, urine and various medications and then forcing her to write a suicide note, before stabbing her to death.
The sadistic attack on Daugherty was anything but unique. Still, few Americans are aware of the special vulnerability of people with emotional, intellectual and physical disabilities to extraordinary violence.

Thirty-two states have hate crime statutes to protect people who have disabilities, but 18 states still do not.
Attacks on people with disabilities are often overlooked because many people are not aware of the extreme vulnerability to maltreatment that accompanies such disorders as cerebral palsy, autism, multiple sclerosis, learning disabilities and mental illness — even though, according to anonymous victim accounts from the Bureau of Justice Statistics, the 54 million Americans with disabilities experience serious violence at a rate nearly twice that of the general population. Their risk of being a victim of sexual assault is at least four times higher than that of people without disabilities. In 2008 alone, Americans with disabilities were victims of about 47,000 rapes, 79,000 robberies, 114,000 aggravated assaults and 476,000 simple assaults. Adding to the trauma of victimization, people with disabilities are much less likely than able-bodied victims to seek medical treatment for their injuries, often choosing, instead, to suffer in silence.

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The project Children with disabilities: targeted violence and hostility is currently looking at hostility, including violence, towards children with disabilities across the EU. It seeks to identify the legal and policy framework, as well as determine how information about such hostility is being collected. In addition, the project will look for examples of promising practices of how some Member States are addressing the problem. A report and comparative studies will be published this year (2014)

 

Bullying of disabled children was rife 7 years ago. Has anything changed?

Children and young people with learning disabilities were  more likely to face bullying than their peers, according to the charity Mencap in a 2007 survey. The statistics were appalling Has anything changed  for the better?

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In the report published in 2007, the charity found that 82% of children with learning disabilities are bullied and 79% are scared to go out because they are frightened they might be bullied.
These figures had risen since the previous year, when 69% of children surveyed by Bullying Online said they had been bullied.
Mencap’s survey of more than 500 children with learning disabilities across England, Wales and Northern Ireland found that 58% had been physically hurt by bullies, while 27% said they had been bullied for three years or more. Some 36% of the children surveyed said the bullying did not stop when they told someone.
More than half of the children surveyed who had been bullied (53%) said they stayed away from places where they had been taunted in the past and 56% said they cried as a result of bullying, with 33% hiding in their rooms.
Mencap says bullying linked to disability wrecks children’s lives and leads to social exclusion in childhood and adulthood. Its campaign, Don’t stick it, stop it!, launches today, and the charity wants to push the government to take disablist bullying as seriously as all other forms of prejudice-based attacks.
The charity wants to see the government produce guidance for schools, children’s service and youth organisations on how to tackle disablist bullying.

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Dame Jo Williams, Mencap’s chief executive, said: “These shocking findings show how big a problem bullying is for children with a learning disability.”
Bullying takes place everywhere, inside and outside of the classroom, Dame Williams said. “Children said they were bullied everywhere they went, on the bus, at youth centres, in parks and on the street. It happens outside the playground but also inside the school gates. Many children are too afraid to go out for fear they will be bullied.”
Children with learning disabilities are missing out on opportunities to learn and make friends, socialise and play, she said. “If action is not taken to tackle bullying, children with a learning disability will face bullying and isolation all their lives.”

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Al Aynsley-Green, children’s commissioner for England, said: “I am very concerned by the findings of this report. All forms of bullying can have a serious and detrimental impact on children’s lives.
“The bullying of children with a learning disability is of particular concern to me as they more likely to be bullied than most other groups of children, meaning that they are unable to enjoy a fun and active school, and social life. We must take steps to tackle bullying now and provide children with the appropriate skills, tools and support to give them the confidence to tackle bullying.”

What has been done ‘to tackle bullying now and provide children with the appropriate skills, tools and support to give them the confidence to tackle bullying’.

How should we protect children with disabilities from being marginalised, excluded or bullied at school?

How should we protect children with disabilities from being marginalised, excluded or bullied at school? Inclusive education has the possibility of opening many doors that were previously closed but children with disabilities may have a significantly less enjoyable experience of schooling than many of their peers

According to researchers, children with special needs often have a lower social standing among the other students in the classroom which may lead to them so frequently becoming the targets of bullying. For children with special needs, and their parents, this present unique challenges that can, at times, overwhelm. “Many parents have a hard enough time dealing with the day-to-day challenges of life with a special needs child. Add bullying into the mix and everybody is just completely overwhelmed,” said one parent.

Research conducted has demonstrated conclusively that children with disabilities are significantly more likely than their peers to be the victims of bullying. A study in the British Journal of Learning Support (2008) found that 60 percent of students with disabilities reported being bullied compared to 25% of the general student population. According to researchers Wall, Wheaton and Zuver (2009) only 10 studies have been conducted in the United States on bullying and developmental disabilities. All studies found that children with disabilities were 2 to 3 times more likely to be victims of bullying than their non-disabled peers. In addition, the researchers found that the bullying experienced by these children was more chronic in nature and was most often directly related to their disability

Many classmates choose to not be friends with these children, thus leaving them purposely out of the social fabric in the classroom. Simply stated, students with disabilities stand out by virtue of behavioural, vocal or physical challenges

Overall, researchers have concluded that children with special needs are bullied more because:

• They may have a low frustration tolerance. When frustration increases and reaches a threshold, it can lead to a meltdown, which makes the person stand out as being different.

• Students with developmental disabilities may have difficulty paying attention to more than one piece of information, which may cause them to stay “stuck” in a conversation. Such actions can have adverse effects on their social skills and make it difficult for them to hold conversations and make friends. They may also have different interest, because of their level of cognitive development, from their peers

• children with autism and Asperger’s syndrome have higher rates of peer rejection and higher frequencies of verbal and physical attacks because of difficulties with social interaction and the inability to read social cues. They are also more likely to be thought of as odd, abnormal and even dangerous

• Children with a degree of motor difficulty have difficulty reading, writing and participating in games. As such, they are often made fun of on the playground and in class because they are unable to perform age-appropriate motor skills, such as kicking a ball to the right person or colouring in the lines. Students with physical impairments may move slower, have less stamina and an unsteady gait. These conditions, as well as others, may be viewed as signs of weakness and precipitate physical or verbal abuse. Children with cerebral palsy may dribble or eat in a messier way than their peers which may result I their being ostracised.

• Children with communication disabilities sometimes have assistive technology devices that other students do not understand and, as such, the other students view them as “weird.” Conversation with them can be slow and onerous and so there are increasingly marginalised.
In a study conducted in 1994, researchers found that children with visible physical conditions or disabilities, such as cerebral palsy and Down’s syndrome, are more likely to be called names or aggressively excluded from social activities. Other researchers have discovered that students with disabilities were more worried about school safety and being injured or harassed by peers, compared to students without a disability. In 2009, the Massachusetts Advocates for Children in a survey of nearly 400 parents of children with autism across the state found that 88 percent of children with autism have been bullied at school ranging from verbal abuse to physical contact.
In Connecticut, Julie Swanson, an advocate for families with special needs and her colleague, Jennifer Laviano an attorney in private practice who represents children and families with special needs, joined forces with other parents to persuade the State Department of Education, to begin to track the number of incidents of bullying and the child with special needs. Julie stated that while there is no “official” data being kept on the incidence of bullying among kids with disabilities, the incoming call data reflected a disturbing trend: more than 50 percent of the complaints involved a student with an IEP, or a disability. The unofficial conclusion is that there is a disturbing, disproportionate occurrence of bullying among students with disabilities.

“This is the exact type of data I attempted to identify as an unmet need in special education in my involvement of the State Advisory Council,” said Swanson. “However, the state did not recognize this as an unmet need that warranted money allocated to officially track the incidence among kids with disabilities.”

Special education programs and inclusion efforts have opened doors for thousands of children with special needs. Yet, those very doors may have also made them vulnerable to bullying. Special classes, extra help and visible assistance given to such students makes them different from other students. As a result, other students too often characterize children with special needs as not smart or too different to be included. Jerome J. Holzbauer reported occurrences of harassment of students with disabilities witnessed from 90 special education teachers in a large public school district. Overall, 96.7 percent of the teacher reported that they observed more than one incident of school-related disability harassment conduct.
“I have a 10-year-old daughter with cerebral palsy, said the father of a child with special needs. “Several days ago, I walked into my daughter’s school cafeteria unannounced. The ‘normal’ kids were throwing food at the children with special needs.”

So what can be done?
Do organisations which deal with bullying make provision for children with special needs?
What was your experience, or your child’s experience of school?
Have any schools or colleges found a strategy which works to minimise bullying and increase integration?
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Parents of autistic boy arrested for false imprisonment

In my view they need help not punishment. Parents arrested for using a desperate measure to contain a seriously autistic boy. Healthcare is not free at the point of delivery in the USA, as it is in the UK, and so they may not have been able to afford medical help. What is the situation in your country? What help would a family receive? What would be provided for a child with severe autism whose behaviour is violent and difficult to manage?

The parents of a severely autistic boy have been arrested after California police determined the 11-year-old had been kept in a cage. Authorities said the metal cage was found in the couple’s home in Anaheim with a mattress and other bedding inside. It was roughly 6ft (1.8m) tall, 5ft (1.5m) long and about 4ft (1.2m) wide with room to stand. The boy was not inside when police went to the house. Family members gave investigators varying accounts of how long he had been kept in it, ranging from hours to days.
Early indications were that the family had been having difficulty coping with the boy. It seems that as he grew older his episodes of violence and outbursts were increasing and his parents used the cage to contain him when that was happening,The boy’s severe autism means he cannot communicate and has violent outbursts, which have grown more violent over the years

The boy’s parents, identified by police as Loi Vu, 40, and Tracy Le, 35, were held on suspicion of felony child endangerment and false imprisonment. They are of Vietnamese origin, speak limited English, and investigators were using translators to sort out details in the case.
Officers went to the Anaheim home and arrested the parents after an anonymous tipster called Orange County Child Protective Services.
The child was well-nourished and appeared otherwise healthy and his two siblings, ages eight and 10, were also unharmed. They were all placed in protective custody.

Well meaning PANTS booklet is too difficult for many children with learning difficulties

A new version of the NSPCC’s successful campaign the Underwear Rule was recently launched to help parents teach children with a learning disability about sexual abuse. The NSPCC and Mencap have joined forces this Child Safety Week to make the popular guide accessible for both parents and children with a learning disability.With more people than ever before contacting the NSPCC helpline (0808 800 5000) about sexual abuse and research indicating that disabled children are three times more vulnerable – both the NSPCC and Mencap are encouraging parents to talk PANTS with their children to help keep them safe.

 

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However, my view is that the booklet is too complex for many children with learning disabilities, The booklet – the PANTS guide – opens with the PANTS  acronym  and an explanation as to its importance:

How to remember the Underwear Rule There is an easy way to remember the Underwear Rule.
Remember the word PANTS.
The first letter from each of the rules makes up the  word PANTS.

P  Privates are private

A  Always remember your body belongs to you

N  No means no

T  Talk about secrets that upset you

S  Speak up. Someone can help

The concept of an acronym is too complex for many children with a learning disability.

Concepts such as  an adult you trust are also too difficult for many children as is the ability to telephone Childline. The concept of the right to say No is also problematic as  children cannot say No to many things such as going to school; having a bath and their hair washed; having their ails cut; washing their hands; or wearing a seat belt in the car.

Children with more severe learning difficulties, particularly those on the autistic spectrum, need simple, straightforward and unequivocal  rules, such as:

  • Someone can only touch you between your legs (or your willie)  if  its Mummy (or other main carer  or Mummy (or other main carer) says it’s OK. (This covers bathing, medical examinations or treatment or similar)
  • If someone tries to touch you ors touches you  between your legs (or your willie) you  must say no and you must tell Mummy (or other main carer) straight away.
  • If someone shows you his willie or ask you to touch it, you should say no and you must tell Mummy (or other main carer) straight away.

It’s important to use words that the child understands for their private parts and to name the person of people that they should tell. And to go over the rules many times.

I’m delighted that efforts are being made to protect children with learning disabilities from abuse; but  something less complex  is needed to give the more vulnerable children, who have least language, least ability to understand and fewest means of making themselves understood. They need simple clear rules – and to be protected by adults.