Experts say the case could soon be talked of as having a similar impact to Cheshire West itself in terms of the role of the state and its obligations to 16- and 17-year-olds
The government’s “bedroom tax” discriminates unlawfully against disabled children, the court of appeal has ruled. The appeal court, which overturned a high court decision, was hearing the case of two disabled grandparents who care for their disabled grandson in an adapted three-bedroom bungalow in Pembrokeshire, Wales. The court also ruled that the bedroom tax – or the spare room subsidy removal (SRSR), as it is called by the government – discriminates against victims of domestic violence, after hearing the case of a woman whose home had been adapted to include a “panic room” to protect her from a violent ex-partner. The appeal court had heard that Paul and Susan Rutherford had been found to be “under-occupying” their home and had their housing benefit cut by 14 per cent, even though their 15-year-old grandson Warren, who lives with them, needs 24-hour care from at least two people at a time. Two paid care workers stay overnight in their bungalow at least twice a week, but the
In all areas of Society there should be zero tolerance of bullying, this is especially so in a closed environment, such as a school, where every member of staff needs to receive training on bullying and gender sexuality, children need and should be listened to.
Pupils who are disabled or have learning difficulties are significantly more likely to experience homophobic bullying than their mainstream classmates, according to a charity which has produced a guide for teachers on tackling the problem.
The Anti-Bullying Alliance cites data showing that 55 per cent of lesbian, gay, bisexual or transgender (LGBT) children are likely to be bullied at school about their sexuality or gender. Among LGBT pupils with learning difficulties or disabilities, however, that figure rises to 66 per cent.
The alliance also conducted its own research, speaking to 33 LGBT teenagers with disabilities or special needs. “How are we supposed to tell [teachers about incidents of bullying], if teachers don’t understand LGBT or disability?” one pupil said.
Another spoke of feeling marginalised, particularly during PSHE lessons: “People think disabled people are asexual as it is, so they don’t talk to you about any relationships, let alone about being or…
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A letter a day to number 10. No 1,331
Saturday 30 January 2016.
Dear Mr Cameron,
I don’t know how much tax payers money Iain Duncan Smith will waste to appeal the court decision that found charging the bedroom tax on rooms that disabled children need for storage and somewhere for carers to sleep and for safe rooms for victims of domestic violence and abuse was discriminatory and illegal, but pursuing this travesty of justice is an appalling display of the most heartless brutality.
The two appeal cases were heard together by the appeal court. The Rutherford family have a profoundly disabled son who cannot walk, talk or feed himself and who, without their constant support, would have no hope of survival. If any child fits the criteria that you assured parliament on three occasions in 2013 would be exempt from the bedroom tax, it is Warren Rutherford. These were…
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An 8-year-old Manurewa boy is one of 11,000 disabled children to lose a welfare benefit, even though his asthma is so bad that he missed one in every four school days last year.More than 11,000 disabled…
An estimated 500,000 children with disabilities are not enrolled in South Africa’s educational syste
A disabled schoolboy has seen his dream come true as he took to the sea on a specially-built surfboard.
The invention, which allows disabled children to ride the waves, offered Kai Lewis a chance to realise his ambition of surfing, and it left him laughing with joy.
The 13-year-old was testing out the seated surfboard which was created by university academics to let disabled children like Kai to feel the freedom of the seas.
And after a successful test, researchers believe many more children who use wheelchairs will be able to spend time on the crest of a wave.
Proud mum Leanne Lewis said: “With this now, he can sit back, relax, and ride the wave.
“The first he caught was the biggest he has ever caught, and my heart was in my mouth.
“It was amazing and it opens up so many options, not just for Kai, but for other children with disabilities.
Kai, of Port Talbot in South Wales was diagnosed with cerebral palsy following a stroke at the age of just 12 months.
But he has been longing to surf along the beaches near his home.
He went to the popular surfing beach at Llangennith on Gower near Swansea to test out the board for the disabled, reports Wales Online.
The board is balanced to allow children to sit in a bucket seat while riding the waves with a trained surfer on the back.
Research by a team of product design graduates and students from University of Wales Trinity St Davids’ will allow more children like Kai to be able to surf.
Product design manager Dr Ross Head said: “The day went so well. We couldn’t have hoped for better surf conditions, weather, and great team of people with the desire to make this work.
“It was an amazing feeling to see Kai surf past shouting with joy.”
Read the full article online: http://www.mirror.co.uk/news/uk-news/disabled-boys-sheer-joy-surfing-6665290
TWO months before she died of pancreatic cancer in November 2010, my normally strong, stoical mother broke
down weeping in my arms over the fate of my autistic older brother.
Institutionalized for over 40 years, Joshua, then 55, was in a stable situation and seemed relatively happy. But my mother was undone by that fear that haunts all parents of disabled children: What will happen to them when I’m gone? Though I hastened to assure her that I would become his guardian and watch over him after her death, she was inconsolable.
In reality, given the nature of the bond between them, I shouldn’t have been surprised. As is often the case between mother and disabled child, the two early on formed a deep, exclusionary attachment that relegated the other members of our family to the outer boroughs of maternal attention. My brother’s marathon tantrums, his gory public (and private) displays of self-mutilation and his regular physical assaults on our mother left me balancing as a boy on a narrow emotional catwalk between instinctual love for my sibling and blind rage. But none of that altered the depth of her feeling for him in the least. He was her main passion in life, and would remain so till the very end.
After her death, as promised, I signed the guardianship papers and found myself suddenly a part-time resident in the island nation of adult autism in America. What I didn’t realize at the time was just how uncharted the waters around that island would turn out to be.
I knew plenty about childhood autism, of course. Who doesn’t? A malady sometimes described as a form of perceptual overload seems somehow a fitting response to today’s speeding, signal-clotted life. And the numbers are dizzying: From a reported incidence of one child in 150 with autism in the year 2000, the prevalence has now risen to one in 68.
Meanwhile, a vast autism infrastructure has grown up around these numbers, with an array of new schools, websites, activist organizations, support and advocacy social networks, and eloquent voices at the very highest cultural and political levels of our society speaking of the rights of those with autism. Researchers are currently backdating the history of autism by reclaiming previously mysterious events — the holy fools of Russia, the so-called feral children of early modern Europe — as potentially having autism at their root. And the recent lumping of the Asperger’s syndrome diagnosis and a variety of related childhood disorders under the rubric of “autism spectrum disorder,” or A.S.D., has produced “sufferers” of autism so high-functioning they often regard their autism as a gift or visionary complement to life. This aggregate “big tent” approach to autism also partly explains the rise in the sheer numbers of children given that diagnosis.
But children eventually grow up. And children with autism have been growing up for over 50 years. Roughly 500,000 children with autism will become adults over the next 10 years, and as they step through the door of age 21, they’ll find themselves inheritors of a sad paradox. The variety of federally mandated supports and services (under the aegis of the Department of Education) available to them until then will have expired; the source of their funding will switch to the far smaller pie of state-by-state money. These resources, along with Medicaid and Social Security, are more fragmented and difficult for families to navigate. So the financial support — used to train them for jobs, find housing, obtain therapy and counseling — will dwindle at the exact moment in time they need it most.
A 2011 study found that 39 percent of young people with autism in the United States received no services whatsoever after high school. Loneliness and social isolation are major issues. Unemployment among adults with autism — most of them higher functioning than my brother — is common. An estimated 90 percent of adults with autism are unemployed or underemployed.
State funding, it seems, remains keyed to the idea that the same maturational curve applies both to “neurotypicals” and those with disabilities, and apparently relies on a magical-thinking belief that these young adults will somehow smoothly make the transition into adulthood without special guidance. Some states now get matching federal funds, but the steep drop-off — and the steep challenge for parents and children — remains.
It’s part of a larger disconnect. There is virtually no current substantive national discussion on the fate of middle-aged or elderly autistic people like my brother, who are living in therapeutic communities, or with their aged parents or in group homes, or sometimes undiagnosed in mental hospitals. Little research money is spent on members of this demographic, and there is almost no public policy debate on how best to serve them. Not much is known of the particular health problems linked to their long-term care, or how their autism progresses and changes over time, or what the cumulative effects might be of the medication they take to render them tractable enough to live in social settings. As Dr. Joseph Piven, a professor of psychiatry, pediatrics and psychology at the University of North Carolina at Chapel Hill, has put it, “There is almost no literature on older adults with autism in the field, so we have virtually no knowledge base.”
Joshua is fortunate. As the beneficiary of decades of the hard-working advocacy of my mother, he now resides in the social and medical equivalent of a perfect fit — a beautiful, well-staffed therapeutic community in central New Jersey. Retired from active daily work after a long career of doing things like busing tables at McDonald’s (too difficult); serving in a high school cafeteria (same) and working on the lawn crew of the large “farmstead” — a rural therapeutic community — where he spent many years (a job loathed but tackled with a certain grim tenacity), he was moved at age 57 from the main campus to another a few miles away, designed specifically for older residents.
But even this place grapples with the stark realities. I regularly receive terse calls from my brother announcing the departure of a care worker he’d grown attached to. Why? Because therapeutic communities and “congregate settings” for adults with autism suffer from a job turnover in direct care staff so high it can only be labeled a hemorrhage. Direct care workers, whom I’ve observed up close for 30 years, are the true unsung heroes of the mental healthuniverse, providing the stability and warmth of family when family is gone or far away. But poor pay (a 2009 study found the national average for an entry-level full-time direct care staffer to be less than $22,000 a year) virtually guarantees high turnover.
In terms of overall expenditure, government support for people with autism is considerable. The Combating Autism Act was passed under President George W. Bush in 2006 and authorized generous outlays for screening, early intervention, education and research. It was renewed in 2014 (its name was changed to the more palatable Autism Cares Act) under President Obama, and continues the disbursal of a large amount of money — about a quarter of a billion dollars a year — to a variety of federal, state and private initiatives. But a quick glance at the funding priorities shows little devoted to people my brother’s age.
While more funds would help, it’s not enough to throw money at adult autism. What’s needed instead is an intelligent, directed deployment of resources and a larger seat at the table of policy debate at both state and federal levels.
Karen Parenti, the vice president of community solutions for Bancroft, a large provider of services for individuals with developmental disabilities and brain injuries, which owns and oversees my brother’s residence, noted an urgent need for things like longitudinal studies on the long-term effects of medications used in autism care and financial support for lifelong learning programs and public education. To Louis F. Reichardt, the director of the Simons Foundation Autism Research Initiative, distinguishing the needs of adults with autism from those of the younger population is paramount: We need to “identify what features these adults share or do not share with the pre-adult population, such as I.Q., verbal ability and social skills. This might tell us to what extent maturity and aging influence the severity of the deficits associated with autism,” he wrote in an email.
In truth, what’s simply needed is more of everything. And in the last several years there have, in fact, been a smattering of research initiatives into older adult autism. Much more is needed. But none of it will arrive in time to have an impact on the life of my brother.
On a recent visit to Joshua at his facility, the drill was the same as ever. My girlfriend and I greeted the affable staffers, and then took him out for a meal, where he defaulted to the same cycling, anxiety-fueled series of questions he does every time we’re together: “I’ve come a long way, haven’t I?” Or “are you happy I’m doing as well as I am while seeing you?” Or, repeatedly, “What time do I have to return home tomorrow?” We saw a movie in blessed conversational silence, stayed overnight in a hotel with him, in that way fulfilling his dream of getting off campus for at least a night, and the next day bid him a heartfelt goodbye.
When I was younger, these visits would shatter me, and I’d often drive home in tears. But such extremities of feeling are long behind me. I’m soothed by the thought that he seems reconciled with his destiny. It’s reassuring to know that my brother will continue to live out his life as he has for the last many years, his mind stabilized by powerful medications, his thoughts revolving around his next activity and meal, the legacy of my mother’s work visible in his neat, sunny room and sparkling surroundings.
Is ignorance a blessing? In certain circumstances, yes. Among the many things he’ll be unaware of, blessedly, is just how lucky he is.
A mum with a severely disabled son mentioned her weekly shopping struggle to the boss of her local supermarket – and their response left her feeling ‘like she had won the lottery’.
Gina Grant, faced a battle every time she tried to negotiate the aisles with a shopping trolley and her six-year-old boy Francis’ wheelchair.
But now she can shop in comfort after the manager presented her with a specially built custom trolley.
Francis has mitochondrial disease, which affects his cells and means he is completely unable to move or walk, reports the Irish Mirror.
Gina says while grocery shopping, she would either have to place the child in the food part of the trolley or push his wheelchair whilst struggling with several baskets.
After one particularly stressful trip to Dunnes Stores, in Letterkenny, Ireland, Gina pleaded with the management to have a special trolley made that would allow her to shop like everyone else.
And on Friday, her dream became a reality.
“Shopping for us is very, very stressful,” said Gina.
“Ordinarily I have to put my son in the back of the trolley along with the food, which he finds incredibly stressful.
“When we get to the tills I would have to lay him down beside them to pack the bags.
“Sometimes I push his wheelchair while carrying several baskets on each arm.
“Sometimes if he is sleeping I leave him in the car with his older brother and have to race around in 10 minutes grabbing everything.
“It’s always stressful.
“The last few times I was in I asked the manager, John, to look into special trolleys for older disabled children.
“I never expected anything to come of it, to be honest.
“When I went in on Friday I was expecting to have to do the same thing, for it to be stressful.
“Then one of the staff came over to me and Francis and said they had our trolley.
“They brought it over and it had a special padded seat, head support, safety harnesses, the works.
If I won the lottery, I couldn’t have been happier.
“It was amazing, I haven’t stopped smiling since.
Gina says she was delighted to be able to shop like other Mums.
“When you have a child with disabilities it takes the normality away and things are harder.
“I couldn’t believe that I could walk around the store at leisure, look at products, talk to people I met and Francis was happy and comfortable in his seat.
“People don’t realise how such a small thing can make a world of difference.
The trolley is the first of its kind in Donegal and is available to anyone who needs it.
A spokesman for Dunnes Stores said the company were now rolling out 155 of the specialist trolleys across their stores in Ireland.
Read the full article online: http://www.mirror.co.uk/news/world-news/mum-severely-disabled-son-complains-6399386
‘…………..By Kirsten Stalker, Julie Taylor, Debi Fry, Chris Jones, Audrey Cameron, Alasdair Stewart and Anita Franklin*
Disabled children are 3 to 4 times more likely to be abused than non-disabled children. However, the real prevalence rates are probably higher because there’s also evidence that the abuse of disabled children is widely under-reported.
Children with communication impairments, learning disabilities and ‘behavioural disorders’ are particularly vulnerable. The abuse of disabled children appears to start at an earlier agethan for other children and boys are disproportionately affected.
Disabled children are more likely than others to be abused by family members or someone they know, but are also vulnerable to maltreatment in care settings.
A recent study of child protection practice in Scotland suggests that disabled children fare less well in child protection services than their non-disabled peers. Despite social workers’ desire to be child-centred, some were anxious about or even resistant to working with disabled children.
Where a child had communication impairments, this could be seen as a real obstacle. One social worker told the study: “If you can’t communicate with a child, then you just kind of give up.”
Other social workers, however, have creative ways to adapt communication with disabled children and seek their views.
The research raised concerns about the risk of social workers over-empathising with parents, based on the view that having a disabled child was very burdensome. This can take the focus away from the child’s needs and may even allow neglect or abuse to continue.
Some practitioners from other agencies – health, education, the police and the third sector – believed that social workers sometimes applied higher thresholds for action to disabled children than were advisable, giving examples of young people “left in squalor for far too long”.
Another study, funded by the NSPCC, explored disabled children’s help-seeking behaviours following abuse and how public services respond.
The study interviewed three disabled children and seven disabled adults. As children, all had experienced abuse or neglect for several years. Seven had told someone else what was happening at the time, in some cases on several occasions, but for only two people did this lead to positive action that stopped the abuse.
Some participants had tried to convey their distress through challenging behaviour, including attempted suicide. Often such behaviours were assumed to be impairment-related.
Disclosures were not always handled well by adults, leaving children feeling disbelieved and disempowered. One barrier to effective help-seeking was a lack of awareness among children and practitioners of what constitutes abuse of disabled children.
Other barriers included the low credibility attributed to disabled children’s stories and the young people’s own feelings of self-blame, fear and isolation. A lack of communication support was a major hurdle for some, particularly deaf children.
Enablers of protection included access to professional interpreters and supportive, trusting relationships so children felt they could disclose and be believed.
Only one of these 10 cases was successfully prosecuted, where the perpetrator had been discovered by a police officer. Some of the adults interviewed felt an enduring sense of injustice.
Long-term consequences included disrupted education and poor mental health, although a few participants said they had been able to transform childhood adversity into a more satisfying adult life.
Lessons for practice
- Work proactively to identify potential signs of abuse: do not assume that disabled children are immune
- Assessments of disabled children’s needs should be accompanied by assessment of their parents’/carers’ ability and willingness to cope
- Take steps to reduce disabled children’s social isolation through – for example – sports, leisure activities or befriending
- Early in an investigative process, seek advice from professionals who know the child well, perhaps a teacher or third sector support worker
- Bring together expertise in child protection and children’s disability
- Seek the child’s view about what is happening and what should happen next, adapting communication and providing support as required. Ask a speech and language therapist to help if appropriate
- Arrange independent advocacy and/or a professional interpreter for the child as required
- Offer counselling
- Ask local schools to provide sex and relationships education and safety skills training for disabled children
- Train staff in communicating with disabled children and protecting disabled children
- Challenge attitudes that discredit or diminish disabled children’s capacity to be credible witnesses
- Liaise with criminal justice services to ensure appropriate support is available for children meeting the police or attending court
*Author details are:
Kirsten Stalker, professor of disability studies, University of Strathclyde
Julie Taylor, professor of child protection, NSPCC Research Centre, University of Edinburgh
Debi Fry, child protection lecturer, Moray House Institute of Education, University of Edinburgh
Chris Jones, child protection lecturer, NSPCC Research Centre, University of Edinburgh
Audrey Cameron, research assistant, NSPCC Research Centre, University of Edinburgh
Alasdair Stewart, research assistant, Department of Urban Studies, University of Glasgow
Anita Franklin, reader, Children and Family Research Centre, Coventry University ………..’