The Down's Syndrome Association (DSA) is the lead voluntary sector organisation supporting the estimated 60,000 individuals with Down's syndrome and their families and providing an information and advice service to the professionals who work with them. We are a Registered Charity established in 1971 and have a membership of over 16,000.

  Prior to 2006, the DSA believes that the majority of cases which breached an individual's Human Rights came about as a result of intentional or unintentional discrimination linked to assumptions based on stereotypes about people with Down's syndrome. The experiences of many people with Down's syndrome can be likened to those of people who have experienced racism. But with racism there is clear legal redress and public intolerance.

  Since mid 2006 we have spoken to, or are informed about, a huge number of adults with Down's syndrome who we believe, as a direct result of their being denied the right to participate in society on an equal footing, are being subjected to degrading and inhuman treatment. Their situations have arisen as a direct result of the funding crisis in adult social care and the subsequent narrowing of eligibility criteria for access to services across local authorities in the UK.

  The Association is concerned about what we see as a crisis in adult social care that, along with a consortium of other leading learning disability organisations such as Mencap, The Foundation for People with a Learning Disability and United Response, we established the Learning Disability Coalition in May of this Year. For more information please see www.learningdisabilitycoalition.org.uk.

  The DSA's submission to the Joint Committee is a collection of case studies that have come through the DSA's National Information Helpline. We believe that these cases contravene various articles of the European Convention on Human Rights. The Case Studies that are marked with an asterisk are those where parents/carers would be happy to provide further written and/or oral evidence if required.

ARTICLE 2—THE RIGHT TO LIFE

Case Study 1

S*, a 46-year-old man with Down's syndrome, is denied heart treatment by a cardiologist on the grounds that he has a learning disability and because the treatment would cause him distress. S's sister argues that his being left to die without treatment would cause far greater distress.

Background

There is a substantial body of literature in the public domain about health conditions that are more common in people with Down's syndrome. Despite this, the DSA deals with numerous cases where common medical conditions are missed or misdiagnosed often as a result of lack of communication or lack of information about a person's medical history. Evidence suggests that an unacceptable number of people with Down's syndrome are becoming ill and dying from manageable and treatable conditions.

  Diagnostic Overshadowing is prevalent in the approach of the health professionals to people with Down's syndrome. Anything that is apparently wrong with an individual is ascribed to the syndrome. Health professionals often regard symptoms of mental and physical health as `behavioural' problems. The administration of medication to individuals exhibiting behaviour that is out of character is common rather than health professionals taking a holistic look at the life of the individual.

  See attachments.[146]

  He'll Never Join The Army—A Report On A Down's Syndrome Association Survey Into Attitudes To People With Down's Syndrome Amongst Medical Professionals (Sarah Rutter & Susannah Seyman, 1999)

  Mortality And Cancer Incidence In Persons With Down's Syndrome, Their Parents And Siblings (C. Hermon, E. Alberman et al, 2001)

ARTICLE 3—THE RIGHT NOT TO BE TORTURED OR TREATED IN AN INHUMAN OR DEGRADING WAY

Case Study 1

D, a young man with Down's syndrome, was placed by Social Services in a supported living unit where he was subjected to consistent physical assaults by his flat mate who also had a learning disability. To date, despite repeated pleas to Social Services by D's elderly parents, D has now been exposed to physical violence on a regular basis for at least six months. During a recent meeting with Social Services D's parents were asked to sign confidentiality agreements prohibiting them from discussing their son's case with outside parties.

Case Study 2

F, a woman of 48 who has Down's syndrome, has suffered from a series of failures by her care staff. The home in which she was very happy was converted three years ago into supported living flats. Around that time she started feeling unsteady and complaining of back pain, which was not taken seriously by staff. She now uses a wheelchair due to spinal damage. Her mother had to fight for her to get a room suitable for a wheelchair user even though the Fire Service stated that her existing room was unsafe. When she was eventually re-housed, it was because she was unable to use the commode and because she had developed sores. However, now she is in a house with three men, none of who use speech. She does nothing all day except watch TV. She has started screaming and banging her head when stressed. It is unclear whether or not her screaming is as a result of pain and/or sheer boredom. Staff are treating this as a "behavioural issue" and on one occasion when her mother visited she was having "time out" in her room for 45 minutes, and she was screaming the whole time.

Case Study 3

B*, a young man with Down's syndrome and Autistic Spectrum Disorder, was locked in a day centre minibus in a garage overnight. There is a real possibility that his incarceration was part of a sexual assault. One week later, four male member of staff at his day centre broke his foot whilst trying to physically force him onto the minibus.

Case Study 4

A dentist who carried out a blanket policy of removing all the teeth of his patients with Down's syndrome regardless of whether or not there was a medical need. The patients were not provided with dentures after the removal of their teeth on the grounds that people with Down's syndrome could not cope with dentures.

Case Study 5

A physician who suggested that the best course of treatment for a patient with Down's syndrome and in-growing toenails was amputation.

Case Study 6

T, a man with Down's syndrome, was pinned down by eight hospital staff in an effort to take a blood sample. In the end, a sample was obtained from the patient's head.

Case Study 7

K, a middle-aged woman with Down's syndrome, threw a cup at a wall in her care home on the first anniversary of her mother's death. This behaviour was totally out of character. Instead of staff trying to find out why she had thrown a cup, the woman was prescribed anti-psychotic medication. The medication subdued the woman to such an extent that she just sat in a chair all day without communicating.

ARTICLE 5—THE RIGHT TO LIBERTY AND SECURITY

Case Study 1

J*, a young man with Down's syndrome and Autistic Spectrum Disorder, was excluded from school at the age of 17. J had a breakdown. Lack of stimulation and meaningful activity after leaving school led him become obsessed with, and to act out, TV-based fantasies. J assaulted a policewoman in imitation of a plotline from a TV soap opera. Instead of J being dealt with by Criminal Justice system, J was Sectioned and placed in a mental health unit for adults. five years later, J's family are still trying to obtain his release. If J had been subject to the Criminal Justice system, there is a strong likelihood that he would have been released some time ago. A fellow resident physically assaulted J at the mental health unit on a daily basis.

Case Study 2

Z, a young man with Down's syndrome, who daily attended a mosque, one of his main social outlets, was detained by the police on leaving the mosque under the Prevention of Terrorism Act. The young man was detained in public and questioned for a period of time. The police did not provide an appropriate adult to support the young man and they made no attempt to contact the young man's family. The man was released in a state of shock and left to make his own way home. The young man was so traumatised by this incident that he would no longer leave the family home.

Case Study 3

R*, a middle-aged man with Down's syndrome, was misdiagnosed with dementia on the grounds that he was unable to find his glasses. R was prescribed various dementia-related medication and he was subsequently sectioned because of his "challenging behaviour". After a lengthy battle by his mother, R was released and medication was withdrawn. Independent experts employed by R's mother have since confirmed that R does not have dementia and the experts have confirmed that R's "challenging behaviour" was caused by the cocktail of psychotropic medication that R was prescribed. R has now been labelled as "challenging" by Social Services. R's mother is finding it very difficult to obtain support services for R despite the fact that he is now off the medication and he is back to his usual self.

Case Study 4

S is 16 years old, she has severe learning disabilities, no speech and she is doubly incontinent. Due to her mother's poor mental health she has been placed by social services into the care of her bachelor male relative, who is in his late 50's and who has a history of strokes and who lives in a remote cottage in a rural county.

As S is unable to see to her own personal care she is dependent on her relative to do this, including her menstrual cycle. The doors of the cottage are kept locked so that S cannot wander off. There are real concerns that if her relative had a stroke on a Friday that no one would know untill the Monday when her school bus came to collect her. She is unable to use the telephone or unlock the doors and there are no neighbours to alert.

ARTICLE 8—RESPECT FOR PRIVATE AND FAMILY LIFE

Case Study 1

P* comes to the end of his three-year FE course in June. Due to cuts in FE funding he is not able to access another course and due to a change in LA eligibility criteria to only fund people who have been assessed as to being critical—he does not qualify for a day service/activity. From June, P who is 22 years old, will only have his one-day a week voluntary work at a local charity to fill his days. P's parents live abroad and P lives in the family home with two other men with learning disabilities and has a supported living package.

This support consists of carers being on hand mornings to prepare his breakfast and help get ready for college and evenings to help with his supper. At weekends he receives limited support to assist him with his shopping, washing and housework. At present this fits around his daytime activities and will only increase by four more hours when his course finishes.

His family, friends and carers are extremely worried for him as he cannot manage with the support he is receiving now. He does not know how to fill his spare time. On several occasions he has spent large amounts of money on dvd's by using shopping as a means to fill his time. On one occasion he spent nearly £2,000 (his savings) and was left without any money to buy food. On a recent holiday with his parents they found it extremely difficult to motivate him to do anything but watch dvd's, which worried them immensely as he has always been an extremely active man with many interests. They fear this reluctance stems from the fact that now he spends the majority of his spare time watching dvd's in his bedroom.

His mother is now going to return to the UK, at the cost of her marriage and career, as her fears for him are so great. His friends worry too as he sinks further and further into depression. He has talked several times of ending his life and joining his hero Elvis in heaven. At 22 his life as an adult should be beginning rather opportunities shutting down or being taken from him.

Case Study 2

K*, a young woman with Down's syndrome, invites friends for dinner at her flat. The friends do not come because they cannot travel without support. The care staff looking after K's friends do not have the time to spend providing support to their clients so that they may travel. Care staff looking after K's friends do not contact K to tell her that her friends cannot come for dinner.

Case Study 3

M* is soon to be 18 years old. Both she and her family feel that she is ready to leave home. Her mother found a residential care provider who could offer M a place in a house with three other women of the same age, all of whom were leaving home for the first time. The house has 24 hour support and satellite supported living flats so that clients could move to different settings with less support if they wanted to when they had adjusted to living away from home and living more independently.

M loved the place and was looking forward to moving there. The Local Authority would not fund M's placement, as she did not qualify for this level of support. M is on the Autistic Spectrum; she has Eisenmenger's syndrome and profound hearing loss. This Local Authority will only fund this kind of placement for people who are doubly incontinent. M's mother also cares for her mother who has dementia.

Case Study 4

G, an older woman with Down's syndrome, whose legs were withering away was unable to access physiotherapy services from mainstream elderly services because she did not meet the age requirement and because she has learning disabilities. Elderly services had a surfeit of available physiotherapists. Learning disability services were not able provide the woman with a physiotherapist.

Background

  Participation in public life is a human right. The Human Rights Act recognises that the ability to develop one's personality by participating in the life of the community is an important aspect of the right to respect for private life.

Welfare Benefits

Case Study

A 42-year-old woman with Down's syndrome, living with her 84-year-old mother, was initially given Lower Rate DLA (Care Component) even though her mother had to do everything for her. Because of this, the mother did not receive a Carer's Premium. It took a Commissioner's Hearing to finally allow Middle Rate DLA to be awarded. The Commissioner agreed that the initial decision was ridiculous.

  Many people with Down's syndrome are wrongly assessed when claiming Disability Living Allowance (DLA). They rely on elderly parents, who have little support themselves, to fill in the forms. Many people with Down's syndrome are reliant on the competence of others to help them claim the benefits that they are entitled to. We believe that adults with Down's syndrome should be awarded Middle Rate DLA (Care Component) as a matter of course due to their vulnerability.

  It is not always easy for young adults to claim Incapacity Benefit. Many are told that they cannot claim Incapacity Benefit as they are in Further Education. The Department of Work and Pensions (DWP) frequently fail to ask applicants what type of educational course they are attending. Consequently, many applicants are denied an application form because DWP wrongly believe that the young adult is following a mainstream education course rather than a lifeskills or adapted/supported course; neither of which count toward the 21 hour rule that debars an individual from making a claim for Incapacity Benefit.

  As a result many people with Down's syndrome miss out on benefits, some for as many as five years. In addition, many are never told about the Income Support Top Up when they initially claim Incapacity Benefit. Young adults claiming Incapacity Benefit and wishing to work under 16 hours per week on supported permitted work schemes have been told that they have to wait or that there are no placements available. As a result the family has to find the young person a placement which can mean that they only have limited time to work before Incapacity Benefit stops.

  The Down's Syndrome Association is aware that some Local Authorities have been assessing DLA (care component) received by adults with Down's syndrome as income for the purposes of setting Community Care Charges. This is contrary to guidance issued by Government.

  See attachment:

  Benefits Lottery—A Survey Of The Down's Syndrome Association's Membership And Their Experience Of The Welfare Benefits System (Christina Katic, 2001)

ARTICLE 9—THE RIGHT TO FREEDOM OF THOUGHT, CONSCIENCE AND RELIGION

Case Study

A young Muslim woman with Down's syndrome, of Ethiopean descent, was given a bacon sandwich by carers at her residential home despite the fact her mother had made Social Services fully aware of her daughter's religious needs. No attempt was made by carers to support the young woman in the practicing of her religious beliefs.

ARTICLE 10—THE RIGHT TO FREEDOM OF EXPRESSION

Background

  People with Down's syndrome face particular challenges when communicating, which affect just about every aspect of life—relationships, learning, participation and independence. Speech and language therapy intervention for people with Down's syndrome barely persists beyond primary school level. We believe that the lack of availability of speech and language services to adults with Down's syndrome may significantly impair the ability of many adults to communicate their wishes and beliefs.

  The lack of good advocacy services also impairs the ability of many people with Down's syndrome to express their wishes and to make their opinions known.

ARTICLE 14—THE RIGHT NOT TO BE DISCRIMINATED AGAINST IN RELATION TO ANY OF THE RIGHTS CONTAINED IN THE EUROPEAN CONVENTION

  The Down's Syndrome Association believes that the current lack of services or paucity of services for people with Down's syndrome infringes their human rights. Young people with Down's syndrome are increasingly being denied services on leaving school or college that would enable them to lead independent and fulfilling lives. Young people, who have often been through mainstream education and who have the same expectations at the outset of their adult lives as their peers, are being written off and consigned to lives without aim and without meaningful activity. Those who are lucky enough to leave home often find themselves in supported living situations where only their most basic needs are met. Social, emotional and spiritual needs of individuals are not considered which all too frequently leads to poor mental and physical health.

  There is an argument that people with Down's syndrome are discriminated against from the moment that they are identified through pre-natal testing. Pre-natal testing for Down's syndrome may send the message to society that the lives of people with Down's syndrome are not valued and this may lead to wider discrimination.

Issue Relating to Education

  There are various practices which are common place in education settings and within the authorities responsible for assessing adults entitlements to an FE placement these include :

  A widespread avoidance of the Statutory Duty to Assess individuals with regard to their education needs.

  The Devolvement of SEN funding to schools to manage individually. The spending of these funds are not adequately monitored or ring-fenced to ensure the intended beneficiaries do actually receive benefit from these monies.

  A decline in numbers of children included at key stage 2/3/4 (as young people progress through their school careers) due to schools unwillingness to make the necessary adjustments for their inclusion.

  A lack of transition planning for Primary to secondary school/ secondary to FE provision and FE to Adult services.

  A wholesale reduction in the existing (limited) FE provision in many areas (for example courses being cut from 4 or 5 days a week to 2 or 3 days per week).

  Failure of FE providers to offer a range of options for students with Down's syndrome. Often only one course is offered and this is invariably inappropriate.

  A `Postcode Lottery' relating to applications for specialist colleges. The Learning and Skills Council refusing funding in one area whereas the same application would be successful across a County border.

  Examples where the Learning and Skills Council funding is withheld for an out of County placement on the basis that local colleges are supposed to be able to meet needs, even when no evidence for this exists.

  A Lack of support to take part in vocational training opportunities. Lack of support to access a wider college community, leisure and interest groups.

  Lack of support and advocacy for transition to adult services, opportunities for vocational training and employment.

  FE—Example—S—Bright young women with GCSEs attending an FE course where she was expected to build Eiffel Towers out of sequins and she was given certificates for identifying the position of the door and the position of her own feet and nose! Meaningless! She developed mental health problems and she tried to commit suicide.

  People leaving college/FE with no support or prospects at the outset. All that has been learnt at college is therefore wasted. Social Services are refusing direct payments. People are not being allowed to leave home because they don't meet the eligibility criteria.

  See attachment:[147]

  Access To Education—Experiences Of Transition From School To Further Education—Diversity And Practice For Young People With Down's Syndrome In The UK (Jane Beadman—Down's Syndrome Association Education Consortium, 2004).

CONCLUDING COMMENTS

  We are grateful for the opportunity of raising our concerns as outlined in this submission and would welcome the opportunity of presenting further oral evidence, should this be deemed appropriate.

28 June 2007

He'll Never Join The Army—A Report On A Down's Syndrome Association Survey into Attitudes To People with Down's Syndrome amongst Medical Professionals (Sarah Rutter and Susannah Seyman, 1999).

Mortality and Cancer Incidence in Persons with Down's Syndrome, their Parents and siblings (C Hermon, E Alberman et al, 2001).

Benefits Lottery—A Survey Of The Down's Syndrome Association's Membership and Their Experience of The Welfare Benefits System (Christina Katic, 2001).

Access to Education—Experiences of Transition from School to Further Education—Diversity and Practice for Young People with Down's Syndrome in the UK (Jane Beadman—Down's Syndrome Association Education Consortium, 2004).

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