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.

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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.

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.

Living with autism – a sister’s story

It’s often difficult for people with a disability to lead an ordinary life but  it’s often difficult for family members too.  Family members may feel that they cannot express their true feelings. Emma, whose story is set out here, bravely sets down her feelings about her brother’s autism. Her story is included here to show just how difficult it can be to live with a severely autistic sibling – and to show that it is OK to express negative feelings. We don’t have to be saints!

I have never accepted my brother’s autism and have found it very difficult to deal with. His name is Daniel, and he has severe autism. I am 18 years old, and he is 16, with the mind of an infant. I shall never hear my brother say my name. He cannot speak, is still in nappies, and has been living in a special care home for four years due to his unmanageable behaviour. Whilst I was growing up, I found life very difficult. I buried my head in class work and focused on getting the best out of life. I am going to university soon and I am immensely proud of what I managed to achieve despite everything that was going on around me

. After my brother was diagnosed with autism at the age of two, my life turned upside down. For the next 10 years, social workers and helpers would constantly be in-and-out of the house, discussing my brother’s needs. Conversations between friends and family would often be related to Daniel, and disability.

I missed out on many normal things in my childhood. My parents tried to make time, but they were often too stressed and preoccupied with managing my brother to listen to my worries. I would often shut myself in my room and cry, while my brother watched ‘Jungle Book’ for the 1000th time, making a big noise downstairs. He would wake up in the middle of the night and kick my bedroom wall, making sleeping a difficult task in my house. Doors, windows and cupboards had to be locked and I couldn’t leave out any toys, school or art work because they would get eaten or ruined.

On a few occasions, my brother managed to escape from the house and ended up on a nearby road. I’ve always thought that he’s like a cat with nine lives. Once, I forgot to shut the front door of the house when I was watering my plant in the front garden and he ended up on a platform of the nearby train station. I hate to imagine the guilt I would have lived with from the age of 10, had anything happened to him

. I wish I could accept his autism, and perhaps I shall in time. I suppose I just need to move on from imagining the ‘what if?’ life I could have had with a normal sibling, a close friend you grow older and shared special occasions with. I have so many memories of my brother running around the house naked before his bath, or running into my room screaming or trying to hit or bite my parents. It felt like he always had an excuse for bad behaviour. On other occasions, he was funny and would just keep himself happy

. I often fear the future. I fear what would happen if my parents died and I’d be his only family left. I fear that my own children which I so long to have in the future, will be severely autistic too. I am sad that he will miss out on life’s beauty, will never have children of his own, and will never be able to live without care.

I wish he could talk to me, and I wish I could be strong enough to visit him once in a while. But I find it so hard to see my teenage brother getting older in appearance but remain the same in mental age. Mum and I have often said how we wish he could stop growing and remain a little child forever. I hope one day I stop feeling jealous of my friends and family with normal siblings. I hope one day my relationship with other members of my family will not be so strained. Although I still get depressed about having an autistic brother, I have definitely learnt to appreciate life. I work hard towards a life I am grateful to have. I am compassionate towards those in need, and don’t worry about trivial things. I am so close to my mum, and I love spending time with her, as well as my cousins when I can see them.

I don’t hate my brother – I hate autism, and what it’s done to my family.

Click here to go to the website of The National  Autistic Society for information about autism