Helping people with learning disabilities stay safe

 

People with learning disabilities can often be victims of hate crime and harassment, whether this is in their home or communities or online, because they are seen as ‘different’ or ‘vulnerable’. . The Foundation for People with Learning Disabilities has created two easy read guides to help people with learning disabilities know how to keep safe. Staying Safe Out and About has information about keeping safe when people are out in their communities. Staying Safe on Social Media and Online tells people how to keep safe when using facebook, twitter and emails. 

 

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People with learning disabilities and forced marriage

British councils have had to create policies to tackle the rise in the number of people with learning disabilities entering forced marriages. They issue guidance for social workers and other staff to raise awareness and spot potential victims. It is unlawful in the UK to give permission for a marriage on behalf of a person if they cannot consent themselves. The Forced Marriage Unit says it is dealing with a “growing number of referrals” involving people with learning disabilities and has produced a booklet to help professionals prevent forced marriages.

A forced marriage in UK law, is one to which the individual has not consented. For people with learning disabilities this may mean that they do not have the capacity to consent to marriage or that they do not understand the nature of the marriage contract. It does not necessarily imply force, coercion or intimidation. In fact the person with learning disabilities may be happy to comply, and enjoy the idea of a wedding or of being married, although they do not fully realise what they are agreeing to, or they may not understand what is happening at all.
The majority of cases of forced marriage reported to date in the UK involve South Asian families; this is partly a reflection of the fact that there is a large, established, South Asian population in the UK. However, it is clear that forced marriage is not solely a South Asian issue and there have been cases involving East Asian, Middle Eastern, European, Gypsy and Traveller and African communities. Some forced marriages take place in the UK, while others involve a partner coming from overseas or a British national being sent abroad.
In 2009 nearly 1,700 incidents of suspected forced marriage were reported to the Forced Marriage Unit. Research also indicates that the forced marriage of children and adults with learning disabilities is likely to be vastly underreported and can differ from the way in which forced marriage presents generally. It is therefore difficult to obtain any figures for the number of people with learning disabilities who are forced to marry.
Many families are not aware that organising marriages for their relative with learning disabilities could potentially be forcing them into marriage. Parents who force their children to marry often justify their action as protecting their children, building stronger family ties and preserving traditions. They often do not see anything wrong in their actions and indeed when this involves a person with a learning disability they often believe it is the right, or only, option and therefore may be open about their intentions. In addition to the motives for forcing people to marry generally, there are other factors which may make someone with a learning disability more vulnerable. For example a lack of suitable day centres and day time activities may isolate a potential victim. Some key motives for forcing people with learning disabilities to marry include:
• Obtaining a carer for the person with a learning disability.
• Obtaining physical assistance for ageing parents.
• Obtaining financial security for the person with a learning disability.
• Believing the marriage will somehow “cure” the disability.
• A belief that marriage is a “rite of passage” for all young people.
• Mistrust of the “system”, mistrust of external (e.g. social care/health) carers.
• A fear that younger siblings may be seen as undesirable if older sons or daughter are not already married.
• The marriage being seen as the only option or the right option (or both) – no alternative.

Anecdotal evidence also suggests that young women with learning disabilities can be married to young men who have in some way “disgraced” family honour and are now regarded as “unsuitable” to enter any other marriage. Marriage with a woman with a learning disability may be seen by the family as their only option. Some prospective brides and grooms who come from abroad may not realise that they are marrying a person with a learning disability and that they may be expected to become a carer.

A booklet for people with learning disabilities  has been produced by Respond with funding from the Forced Marriage Unit.

Disability and Learned Helplessness

Children with disabilities often develop ‘learned helplessness’. This means that they learn that they do not have to do things for themselves. Other people will always help them or do the task for them. They do not do as much for themselves as they could. (Throughout this post ‘children’ can be replaced by’young people’ or’adults’ but it would have been too clumsy to write it this way)

This can be because:
• they are given too much help, especially if it takes them a long time to do something or because they do things awkwardly
• because they are asked to do things that are too difficult for them
• because other people think that the child is not able to learn
• because they always get their own way by crying or making a fuss and so have never had to do things for themselves

Over time, the child can begin to see herself as a passive participant who is not able to be actively involved in learning. This presents an additional challenge for a teacher or parent who is trying to ignite the child’s desire to learn. Think carefully about whether you are contributing to learned helplessness – it’s very easy to do.

The points below are intended to stimulate learning and avoid the feeling that learning is pointless, someone else will always do i for you anyway.

1: Motivation
Nobody does anything without a reason that makes sense to them at the time. Motivation for learning comes from within a person. Almost all human beings have inborn drives:
• to discover and understand the world around us:
• for independence and sense of self,
• to connect socially with others (people on the autistic spectrum may not have this)

However, motivation can be stifled habituation (boredom develops with too much repetition) or by a feeling that it is pointless to make the effort as someone else will do it for us anyway, or by the nature of the task If something is too easy, it does not stimulate our natural curiosity; too difficult, and we will not be motivated to even attempt the task.

Children with severe disabilities are often presented with tasks that are either too easy or too difficult physically or cognitively. Often participation is done in a hand over hand fashion with little effort from the child. This can lead to passivity. Use hand over hand sparingly and think about whether it is useful and whether the child is engaged or just being moved about like a puppet

The task of parents, educators and therapists is to provide opportunities where children can be challenged and succeed and to prevent them from learning passive dependency.

It may be helpful to:
• Provide a range of assistive devices so children can accomplish physical tasks with less assistance
• Set up activities for the child to use a combination of knowledge and trial and error to achieve success. – and let them struggle to achieve.
• Use theme based learning which provides multiple experiences with a concentrated set of vocabulary and concepts without being monotonous.
• Provide opportunities for real making choices – enable the child to feel “In Control” –but go along with the choices. Making choices helps to increase cognitive engagement and reduce passivity. Begin with objects and move to pictures with and without voice-output. Provide multiple opportunities for meaningful choices throughout the day. Try presenting choices of actions instead of objects for increased motivation and more natural repetition. Offer choices for frequent short activities, or choices within an activity instead of choosing a whole activity.
• Provide children active experiences with early computer play where the child can direct the actions of the computer through simple choices and then observe the results. Use of 2 switches with different functions connected to computer, battery toys and/or simple voice output devices. Use of eye-pointing and eye-gaze frame for children who face physical

Attention and connection with others are often powerful motivators as they communicate a feeling of value or worth as a human being.
• Give children tasks that are truly appreciated by, or important to, someone else, and motivation is likely to be increased.
• Provide frequent opportunities for social interaction and connection with other people, while acknowledging that this is not a universal motivator, especially for some on the autistic spectrum.

2: Active Participation
Active participation is a great motivator but can be difficult for children who face severe multiple difficulties. They cruise through the day as a passive passenger, never needing to pay attention to where they are going or why. They are cared for and entertained regardless of their participation level. This happens sometimes in inclusive settings where the main objective is social exposure and it can happen in a specialist setting, where the routine may be so structured and predictable that there is little room for change or surprise. But think of ways in which it can happen for each individual.

The problem is that learning is less likely to take place when the child is in a passive role. The research is clear that active learning is vastly more effective for all children. So we need to think outside the box and create participation opportunities within activities.

While children cannot often have control of the sequence of the daily routine, there can be opportunities within routines that affect them – if you create them.

3: Multiple Modalities
Children with disabilities often have weaknesses in one or more areas of sensory processing. As they are not being able to move their bodies into position to see, hear or feel what they would like, this problem is compounded. Processing information is often easier and more effective when presented through a variety of modalities such as sight, sound touch and movement.

When communication is difficult, it is especially important to enhance the auditory component of language with other modalities.
It is important for children to experience language receptively that utilizes multiple modalities. Using picture communication symbols, voice-output and sign language as input can provide multi-sensory information for cognitive processing.

4: Natural Contexts
Learning takes place most effectively within the context of a meaningful event and not in an isolated drill and practice session. Help children relate what they already know to the new information – thus increasing
motivation and retention. The natural context provides meaningful opportunities for practice with natural variability to maintain interest.
When learning is presented in an isolated situation, out of the natural context, there is less for the child to associate with and fewer opportunities for practice. Augmentative systems need to be seen by the child as a natural means for communication. This is another reason that the systems must be used by others, while communicating to the child.
A variety of communicative functions need to be modelled in appropriate pragmatic contexts. Children’s attempts to communicate also need to be responded to and expanded upon using the same systems that the child is using.
• Provide activity specific vocabulary on augmentative communication devices.
• Focus on function – not ability to use a particular device

A corollary of natural context is natural consequences. It is important for all children to learn the natural consequences of actions, but all too often the natural consequences of the actions or choices of disabled children are prevented from happening by those who care for them. If you eat your packed lunch at 10 in the morning, you won’t have it at lunchtime; if you refuse to put you coat on you will feel cold. Obviously natural consequences have to be carefully managed so that a child is not put at risk. However, overprotection from them creates total passivity and prevents the growth and development of the individual.

The thinking behind inclusive education

A person can be defined as having a disability if he or she finds it difficult or impossible to carry out some everyday activities that someone the same age, sex and social context would be expected to be able to carry out. This means that they need support to do some things and there are some things that they can’t do, but does not mean that they cannot learn or that they cannot achieve and be successful in school and beyond school in vocational training or in employment.

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Shaun has a severe intellectual impairment – he can’t write his name but he can work hard.

There are some big shifts in attitude that have to be made for inclusive education to succeed. These include:
• The change from thinking that all children with disabilities need separate services that are very different from the services that other children receive. Children with disabilities can often benefit more fully from receiving regular services alongside other children of the same age, with support if they need it. Being included in this way is a better preparation for adult life than being in a service which is totally separate. A few children will always need largely separate provision because of the severity or complexity of their needs, but they can benefit from contact with other children in less formal situations such as games, drama or music – but they need to be properly included, not just present.
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Danijela has cerebral palsy  – and a master’s degree

•The change from thinking about what disabled people cannot do, to thinking about what they can do – particularly with the correct support.

Once everyone in the education service, parents and members of local communities believe that many children with disabilities should be educated in local mainstream schools and that this can be achieved successfully, they can concentrate on how to do this successfully.
It is important that children with disabilities are not thought of only in terms of their disability or there diagnosis. They should also be seen as individuals who are not necessarily like other children with the same diagnosis. They more like other children without disabilities than different from them, with their own unique personality, likes and dislikes, interests, talents and needs for support. Two children with Down’s Syndrome or with cerebral palsy will be very different from each other and may have more in common with a child without a disability than with each other.
Modern technology is enabling people with disabilities to achieve in ways that would not have been possible in the past and it should be used wherever possible.
Everyone concerned with children should think about their own current experience, and about what has to be done to bring about the changes in attitude which are described here? How could the changes in attitude described above be supported? Which people are in the best position to support the changes? What could each individual to encourage attitude change?

What is inclusive education really about??

Many people are concerned about the concept of inclusive education.Inclusive education does not mean that mainstream schools and teachers are being asked to do something entirely new. Children in all schools are already very diverse. They cannot all learn the same things, in the same ways, in the same amount of time. Read the bullet points below and think about how you could explain this to people who are worried about inclusive education.

  • Every class in every school contains children with a wide range of intellectual and physical abilities.
  • Every class in every pre-school and every basic education school will contain children with have more difficulty in learning than most of their peers and some children whose ability to learn is ahead of their peers.
  • Many children with some degree of difficulty with understanding, hearing, seeing, motor skills or social skills are currently attending mainstream schools
  • Talented and gifted children are currently attending mainstream schools
  • Teaching all children the same things, in the same ways, in the same amount of time is inappropriate. Good teaching means adapting what is taught and how it is taught to the different abilities and needs of different children. This is true for all teaching of all children.
  • Inclusive education asks the education system and schools to open their doors to children who have some greater degree of difficulty with understanding, hearing, seeing, motor skills or social skills than many who are currently attending mainstream schools.
  • To take down barriers to learning which many children are now facing, schools need to become better at adapting what is taught and how it is taught to the different abilities and needs of different children. This will be even more vital for children who might previously have attended a special school and who have some greater degree of difficulty with understanding, hearing, seeing, motor skills or social skills than many who are currently attending mainstream schools.

Children with disabilities are not all the same. Some children with a disability have average intellectual ability, although they will need particular support in order to achieve their potential. Some will be talented or gifted. Some will have limited intellectual development.
No teacher, however talented and committed, or however well trained, can teach a wide range of children effectively without support. Support can be provided through teaching materials, so that teachers can use different books, worksheets or other materials with different groups of children. Support can also be provided in the classroom or in the school, by a range of specialists. Support should come into the classroom or into the school to the child who needs it. It should be rare for a child to have to go out of the class or out of school to receive support from specialist services.

Teachers need to be trained to use different ways of teaching, different materials and different levels of work for different children in their classes. They also need to receive training on how to use specialist support services
Colleagues providing specialist support services need to change the ways in which they work if they are not already bringing their services to the child, rather than having the child come to them. Children should not be taken out of school in order to receive speech and language therapy, physical therapy or other support services.

Inclusive education does not mean that all children should go to mainstream schools. There will always need to be special schools for children whose disabilities are so severe that they need highly specialised teaching in adapted environments; for children whose behaviour difficulties are so challenging that they need a different regime in a different kind of environment.

Inclusive education benefits all children because the teaching is geared to individual difference, whether or not some children have a disability. It’s about every child receiving he support they need.

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Of all the world’s children deprived of education, 40% are disabled.

A person can be defined as having a disability if he or she finds it difficult or impossible to carry out some everyday activities that someone the same age, sex and social context would be expected to be able to carry out. This means that they need support to do some things and there are some things that they can’t do, but does not mean that they cannot learn or that they cannot achieve and be successful in school and, beyond school, in vocational training or in employment.

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There are some big shifts in attitude that have to be made for inclusive education to succeed. These include:
• The change from thinking that all children with disabilities need separate services that are very different from the services that other children receive. Children with disabilities can often benefit more fully from receiving regular services alongside other children of the same age, with support if they need it. Being included in this way is a better preparation for adult life than being in a service which is totally separate. A few children will always need largely separate provision because of the severity or complexity of their needs, but they can benefit from contact with other children in less formal situations such as games, drama or music – but they need to be properly included, not just present.

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• The change from thinking about what disabled people cannot do, to thinking about what they can do – particularly with the correct support.
Once everyone in the education service, parents and members of local communities believe that many children with disabilities should be educated in local mainstream schools and that this can be achieved successfully, they can concentrate on how to do this successfully.
It is important that children with disabilities are not thought of only in terms of their disability or there diagnosis. They should also be seen as individuals who are not necessarily like other children with the same diagnosis. They more like other children without disabilities than different from them, with their own unique personality, likes and dislikes, interests, talents and needs for support. Two children with Down’s Syndrome or with cerebral palsy will be very different from each other and may have more in common with a child without a disability than with each other.

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Modern technology is enabling people with disabilities to achieve in ways that would not have been possible in the past and it should be used wherever possible.

Everyone concerned with children should think about their own current experience, and about what has to be done to bring about the changes in attitude which are described here?

How could the changes in attitude described above be supported? Which people are in the best position to support the changes? What could each individual to encourage attitude change?

Children studying at Bishop Willis school in Iganga, eastern Uganda.

 

What is ordinary life like for disabled children and their families in Pennsylvania U.S.A.?

The following story is deeply disturbing, not only because of the individual circumstances but because it seems that the family had a least two disabled children who didn’t go to school and who seems to have received no other services. Other reports mention at least one other child who is deaf. How can one of the riches counties in the world allow families to live like this?

This story has a particular resonance for me because my son Shaun has the same syndrome as the dead child. Shaun was very violent and difficult to manage as an 8 year old, but he attended a special school; attended a special adventure playground on Saturdays and during school holidays; and was a member of the Boys’ Brigade. Our life was difficult but service were there in the UK.

The mother of an 8-year-old Pennsylvania boy whose decomposing body was found on the third floor of their home said Saturday she didn’t know he had died until noticing the smell.
Kimberly Tutko said her husband was the primary caretaker of their mentally disabled son, and he waited several days to tell her the boy had died, Pennlive.com (http://bit.ly/1rXiJbV) reported. Police were called to the home Friday and found the boy’s body.
Police charged Jarrod Tutko, 38, on Saturday with child endangerment, concealing the death of a child and abuse of a corpse. Court records do not list an attorney for him.
Harrisburg police said in a statement that Tutko informed his wife about the death of their son, Jarrod Tutko Jr., “when the odour of decomposition became too strong.”
It’s not clear how the boy died. An autopsy is scheduled for next week.
The couple’s five other children were placed in protective custody.
Kimberly Tutko told Pennlive she understands people will find it difficult to believe she did not know her son was dead.
She said her son was severely mentally disabled and often difficult to control. He would rip up the flooring and carpeting of his bedroom, smear his feces on the floor and walls, and refuse to wear a diaper, she said. He had Fragile X syndrome which can cause severe intellectual disability and behaviour which is very difficult to manage.
He lived on the third floor and was primarily cared for by his father, while she looked after another disabled child who requires round-the-clock care and stays on the second floor, she said.
“My daughter relies on me,” Kimberly Tutko said. “I take care of her and my husband takes care of Jarrod Jr.”
Kimberly Tutko said her husband told her their son died Tuesday.
“I said to him ‘Why didn’t you say anything?'” she said. “He said he was too afraid to say anything because of other kids in the house.

Should disability be grounds for abortion?

On March 26, North Dakota became the first US state to prohibit abortions after detection of “either a genetic abnormality or a potential for a genetic abnormality,” with this defined as “any defect, disease or disorder that is inherited genetically”. Down’s syndrome is specifically cited in House Bill 1305.

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Some disability advocates have hailed the law as a step forward to create a better society for individuals with disabilities. As Mark Leach, a lawyer and parent of a child with Down’s syndrome, writes, banning the discrimination of a child with disabilities even before she or he is born is an example of how “public policy starts with the statement that discrimination is prohibited and then states enact policies to create a society where discrimination is no longer a barrier.”
A result of passing such laws could indeed be “to increase the number of advocates for … social supports” – for education and other support services for individuals with disabilities, he argues.
Knowing that society is not a place where individuals with disabilities are fully supported and integrated is why many women have terminated their pregnancies when they learn that their child has Down’s syndrome,

Alison Piepmeier, whose 4-year-old daughter, Maybelle, has Down’s syndrome, is writing a book on prenatal testing and reproductive decision-making. In a preview in the New York Times, she shares that the many women she has spoken to all emphasized that “abortion was an incredibly painful decision,” but one they chose in no small part because “they recognized that the world is a difficult place for people with intellectual disabilities”.

As parents of children with Down’s syndrome, Becker, Leach and Piepmeier have all been
confronted with the news that their baby had genetic abnormalities and chosen to go ahead with the birth.

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However, the mother of another severely disabled child reportedly said she would rather have aborted her child than face the life they had after her baby was born.
Joanne Chinnock claimed £500,000 compensation because she says doctors didn’t warn her that she had a chance of her baby being born handicapped. Her daughter, Bethany Chinnock-Schumann, was born with an extremely rare chromosomal disorder which left her nearly blind and in almost constant pain. She died aged 11. They want compensation for the damage done to their lives, their careers and the cost of raising their child.
Another mother, Hilary Freeman, says she had an abortion on doctor’s advice and thinks that a life of suffering is no life at all for a child. She has no regrets about her decision. Hilary had an 8-week scan at her first pregnancy which showed the embryo wasn’t developing properly. A later scan at 24 weeks showed the child, a girl, had a very rare condition which would have given her all kinds of physical and mental disabilities, and she would have been in pain – if she’d survived.
Hilary sought as much advice as she could about the diagnosis, an agonising situation knowing she very much wanted the baby she could already feel kicking. .She decided to terminate the pregnancy, and has no regrets, but says she doesn’t believe all disabled children should be aborted – she thinks it depends on the condition involved and quality of life the child would have. She would not want any child to suffer as hers would have.

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But should it be possible for a woman to make such a decision? Is it discrimination? Will the North Dakota legislation challenge discrimination or will it condemn some children to lives of suffering?

What is the legislation in your country?

How would you make such a decision, if you could make it?

Do you have a view about how such a decision could have been made about you?

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.