Children's Rights - Human Rights Joint Committee Contents


Memorandum submitted by Scope

  Scope welcomes this opportunity to submit written evidence to the Joint Committee on Human Rights, regarding Children's Rights. We commend the Committee for investigating such an important issue given the recent concluding observations of the UN Committee on the Rights of the Child and in particular in calling for evidence relating to the experiences of disabled children and young people.

Due to the nature of the inquiry and the short timescale for responses, we have not been able to consult directly with disabled children, young people and their families; however we have drawn upon previous evidence we have collected in relation to abuses of disabled children's human rights. We also recognise the need to limit the length of written responses to the committee and therefore have prioritised issues to present in this submission. In light of this we would, welcome any further opportunity to give oral evidence to the committee on other human rights abuses of disabled children and young people.

  Finally, we would like to take this opportunity to remind the Committee that effective consultation with disabled children and young people takes preparation. Scope believes that it is essential for investigations of this type to allow adequate time to engage with disabled children and young people in order to enable them to contribute their views and experiences in an accessible way.

SCOPE

  Scope's mission is to drive the change to make our society the first where disabled people achieve full equality. Scope runs national campaigns specifically focusing on the human rights of disabled children and young people. Details of Scope's campaigning activity can be found at www.timetogetequal.org.uk. Scope has a particular focus on children and young people with cerebral palsy and expertise in complex needs. Research has demonstrated that cerebral palsy is the most common childhood impairment. Scope runs a range of children and young people's services including specialist education from early years through to further education, a fostering service and a brokerage service for short breaks.

CHILDREN'S RIGHT TO BODILY INTEGRITY AND TO A DIGNIFIED LIFE

  Core to the principles of human rights and social justice is the notion that all people irrespective of their status have a fundamental right to bodily integrity and to live a dignified life. For disabled children and young people, these rights are set out in the Article 17i of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and Articles 6ii and 23iii of the UN Convention on the Rights of the Child (UNCRC). Despite these founding principles of international convention, many disabled children and young people routinely have their human rights abused in these respects.

Scope has evidence that non-disabled peers and adults routinely make assumptions about the value and quality of the disabled children and young people's lives based on their appearance, how they communicate and their health needs. Assumptions made by adults who are service providers, medical professionals, members of the public and representatives of statutory bodies about a disabled child's mental capacity can result in discrimination and exclusion. These assumptions impact on disabled children's realisation of the right to bodily integrity and to a dignified life.

RIGHT TO A DIGNIFIED LIFE

    Case study 1A student with cerebral palsy and learning difficulties at one of Scope's residential schools was recently admitted to hospital for three days during the school holidays. The student returned directly to school from hospital and when staff collected him it was noticeable that he had lost a significant amount of weight. The student stated that he had not been given any food to eat during his three day stay. When staff challenged the hospital, they responded by stating that they did not know how to feed him.

    Source: Scope

    Case study 2

    A disabled young man who attends one of Scope's educational establishments was admitted to hospital with pneumonia, his parents were contacted and they arrived at the hospital four hours later. When his parents arrived they observed that their son had not been given any oxygen for his pneumonia and "Do Not Resuscitate" had been written on his notes. A formal letter of complaint was written to the hospital, which was responded to 18 months later, by which time the registrar who treated their son was no longer working at the hospital. No further action was taken.

    Source: Scope

  The above incidences happened within the last two years and illustrate the continuing discriminatory attitudes of medical professionals towards disabled children. Disabled children and young people have told us in the past that medical professionals, including their local GPs or school nurses, have treated them in a less than dignified manner. Disabled children and their families have commented on the language that has been used by practitioners which makes assumptions about their quality of life. Whilst not all cases result in the level of neglect portrayed in the case studies, negative encounters can leave disabled children feeling upset, distressed and frustrated. These encounters clearly contravene Article 37iv of the UNCRC.

  Unfortunately, cases which do involve higher levels of mistreatment and indignity are not as rare as they should be. Many third sector organisations and Disabled People's Organisations working at the grassroots have examples of abuses of disabled people's Human Rights in relation to medical treatment for both routine illnesses as well as life-threatening health issues. A number of the disabled children and young people that we have spoken to have told us that they fear having to go to hospital and some are reluctant to seek medical advice or treatment because they do not believe they will be given equal treatment.

  The attitudes and actions of these professional led to a breach of disabled children's rights under Article 19 of the UNCRC. The article states that:

    "States Parties shall take all appropriate legislative, administrative, social and educational measures to protect the child from all forms of physical or mental violence, injury or abuse, neglect or negligent treatment, maltreatment or exploitation, including sexual abuse, while in the care of parent(s), legal guardian(s) or any other person who has the care of the child"v

  Scope would like to see specific legal safeguards introduced to protect disabled children from abuse in hospital. This should ensure that "Do Not Resuscitate" and "Do Not Intubate" orders are put on their medical notes without their express consent. Furthermore it should safeguard disabled children against failure to administer treatment or basic care that would automatically be given to a non-disabled person. We believe there should be a duty to investigate any accusation of undignified treatment and significant penalties should be attached to this type of offence.

  Scope would welcome robust Disability Equality Training, with a strong focus on the Social Model of disability aimed at all medical and health professionals as part of their basic training. Compulsory training on the duties of statutory service providers under the Mental Capacity Act should also be introduced and decisions made by medical professionals regularly reviewed in order to prevent discrimination. This is particularly important in relation to life and death decisions as disabled people are often treated as though their lives are less valuable, or in extreme cases, with the view that dying would be in their best interests. The right to life is embedded in the Human Rights Act 1998, Article 6vi of the UNCRC and Article 10vii of the UNCRPD.

  The Government has failed to "ensure that no child is deprived of his or her right of access to such health care services ... take all effective and appropriate measures with a view to abolishing traditional practices prejudicial to the health of children" as set out in Article 24 of the UNCRC. This means that many disabled children and young people are left vulnerable to the prejudices of individual medical and health practitioners. It is therefore pertinent that as the Government moves towards ratifying the UNCRPD it ensures that the experiences above are avoided by full implementing Article 25 and particularly in relation to section F to "prevent discriminatory denial of health care or health services or food and fluids on the basis of disability". Until this issue is addressed many disabled children will be denied the opportunity to achieve the Every Child Matters outcomes.

THE RIGHT TO BODILY INTEGRITY

  Despite the right to bodily integrity being a fundamental aspect of human rights, it is still not uncommon for disabled children and young people to have their fertility restricted by medical professionals. It has been argued by clinicians that some disabled young people do not have the mental capacity to understand what it is like to have children and as such restriction of their fertility is not problematic. In extreme cases this is used to either restrict the growthviii and physical maturation of the child or sterilise themix. This results in a forced intervention in the psychological, emotional and physiological journey towards adulthood.

In 2007 one particular case came to international prominence. In the USA parents of a nine year old disabled young girl (Ashley X) were seeking non-therapeutic surgical intervention to restrict her growth and maturation so she would remain like a child and be easier to care for. Her parent's wishes were supported by their medical advisers and, without approval from the courts, Ashley was given a hysterectomy, had her breast buds removed and received hormone treatment to restrict her growth. It appears that the doctors and the child's parents acted unlawfully by not seeking approval from a court for this intervention yet to date no legal action has been taken against any of the parties involved.

  The media's coverage of this case, generated numerous other accounts of sterilisation or intended sterilisation of disabled children and young people. Scope is highly concerned that without tighter legal safeguards medical interventions similar to those in Ashley X case could occur in Britain. At the time of the Ashley X case a spokesperson for the British Medical Association (BMA) said that: "if a similar case occurred in the UK, we believe it would go to court and whatever decision was ruled would be in the best interests of the child'.x We were told by people working in the field that these types of cases came to the Family Courts very few people knew about their existence. These cases only usually come to the courts if there is a disagreement between parent and clinician or because the hospital wanted legal clarification before taking any action. Scope believes that such cases should come to court as a matter of course, when parties are considering non-essential intervention, irrespective of whether there is a disagreement or not.

    Case Study 3

    In September 2007 it was widely reported in the British media that the mother of a 16 year old disabled woman who has Cerebral Palsy was seeking a hysterectomy for her daughter so that she avoid what her mother perceived to be the "distress and loss of dignity" that comes with the onset of menstruationxi: "She is double incontinent, she has no useful function in her hands or legs, she can't communicate. [My daughter] has an undignified enough life without the added indignity of menstruation. She will not understand what is happening to her body and it could be very frightening for her"xii. A consultant gynaecologist from her hospital had backed her decision, was prepared to perform the operation and was seeking legal advice from the NHS. xiii In this case the hospital took the decision not to undertake the surgery because the young woman had not started menstruating so there was no "problem" to address.

  The reality is that disabled young people are still routinely having their right to retain their fertility denied. As such, many disabled people are unnecessarily infantilised and do not receive the equal status accorded non-disabled people in becoming an adult. What is particularly problematic is the notion that it is acceptable to render disabled children's bodies "more convenient" for care givers. xiv It is the dignity of this young woman, Ashley X and other disabled children which becomes compromised. It disappears off of the radar, with no accountability, no transparency of process and no mechanisms by which the voice or representation of the disabled people can be heard. Furthermore their rights under Articles 7 and 15 of the UNCRPD become severely abused. xv

  Scope believes that there must be a legal requirement to seek a court judgement where any invasive or irreversible procedures or therapies are being considered for a disabled child or young person who cannot consent. This is especially important if, like in the case of Ashley X, the intervention is not to treat a diagnosed medical condition or illness. We believe there is a real need for public scrutiny of these decisions. Furthermore due to the lack of transparency in the process and the evidence being behind closed doors, we have little confidence in how decisions are made before they reach the family courts. This lack of transparency makes it difficult for third parties to intervene and represent the best interest of the child. This is particularly important in cases where the child has little or no speech and need an independent advocate to represent their rights and best interests. Scope believes that the Family Courts should introduce a mechanism by which interested parties could find out about these cases with enough time to intervene.

THE VOICE OF THE DISABLED CHILD

  The voice of the child in these cases are neglected in favour of assumptions and prejudices of a professional adult. There is clearly a contradiction here in relation the power relationship between adult and child and the governing principles of the UNCRC. A key question in the complex case of young woman above is who is really representing the young woman's best interests? Scope believes that in many cases parents and clinicians are acting in what they do believe to be the best interests of the child. In the majority of these cases parents are not receiving adequate day to day support or information services. This leads parents and medical professionals to pursue interventions which do not necessarily match the best interests of the child in every situation.

The Government has taken significant steps in making a commitment and issuing guidance to place young people's own voices at the heart of children's policy, however we concerned over the extent to which this is realised on the ground. The national picture is characterised by a postcode lottery, dependent on a few local examples of good practice. Currently, there are few examples of independent advocacy or effective self-advocacy being used. The UN Committee on the Rights of the Child in its concluding observations in 2008 criticised the Government for the fact that many disabled children still have no say around decisions that fundamentally affect their lives.

  When disabled children are at risk of being treated with indignity and having their bodily integrity invaded, it is vital that they have access to independent advocacy, communication equipment and appropriate support mechanisms. Scope believe that the Government should commit to strengthening the voice of the young person by embedding the children's rights perspective and principles of the UN Convention on the Rights of the Child into the transition process. This will create an increase in demand for services to support the young person's voice in the form of independent advocacy or self-advocacy. Scope would encourage the Government to strengthen their recognition of independent advocacy as a vital vehicle for enabling disabled children and young people to have choice and control over their lives, and to commit to adequately resourcing and building capacity for this service. Advocacy provision is patchy across the UK and non-existent in some areas. Currently there is no statutory right to independent advocacy or self-advocacy support in these cases of non-essential medical intervention and in the rare instances where support and services do exist they are chronically under-funded. This situation is getting worse as many advocacy schemes are threatened with closure as local authorities withdraw funding.

  Scope welcomed the Mental Capacity Act which created an assumption of capacity unless proved otherwise and puts a duty on statutory service providers to support people to make their own decisions. It also gives some disabled young people the right to an Independent Mental Capacity Advocate (IMCA). We remain concerned, that individuals only get access to an IMCA for life-changing decisions on health and living arrangements and only then if people have no family or friends to represent their wishes. Furthermore, Scope is concerned that, with two exceptions, this Act relates to disabled people over the age of 16 years. One of these exceptions is that "offences of ill treatment or wilful neglect of a person who lacks capacity within Section 2(1) can also apply to victims younger than 16 (Section 44)". However under the Act only people aged 18 and over can make an advance decision to refuse medical treatment.

  Scope believes that in situations where a disabled child lacks capacity they should always have access to an independent advocate to represent their rights. This would address concerns within the current legal process that the best interests of the child are strongly influenced by the desires and wishes of parents and medical professionals. Without a statutory right to independent advocacy, disabled children who lack mental capacity will be vulnerable to invasive non-essential medical intervention, without anyone safeguarding their right to bodily integrity. This is obviously problematic in cases where parents and clinicians agree on non-essential medical treatment and if not subjected to legal review. This safeguard is essential for disabled children to enjoy Article 12 of the UNCRC. xvi

  In its move towards ratifying the UNCRPD the Government must keep in mind the criticism made of it by the UN Committee on the Rights of the Child in 2008. In particular it must take address that recommendations made by the committee that the Government should:

    "take all necessary measures to ensure that legislation providing protection for persons with disabilities, as well as programmes and services for children with disabilities, are effectively implemented; provide training for professional staff working with children with disabilities, such as medical, paramedical and related personnel, teachers and social workers; develop a comprehensive national strategy for the inclusion of children with disability in the society; [and] undertake awareness-raising campaigns on the rights and special needs of children with disabilities, encourage their inclusion in society and prevent discrimination and institutionalization".

  If the Government do not heed the Committee's advice many more disabled children and young people will be treated with indignity and have non-essential medical intervention behind closed doors.

  Thank you for taking the time to read Scope's written evidence. Scope would welcome the opportunity to give oral evidence to the Committee to expand further on these and other issues affecting the Human Rights of disabled children and young people.

i  UNCRPD (Article 17) Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.

ii  UNCRC (Article 6) States Parties recognize that every child has the inherent right to life [and] States Parties shall ensure to the maximum extent possible the survival and development of the child.

iii  UNCRC (Article 23) States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community.

iv  UNCRC (Article 37) States Parties shall ensure that no child shall be subjected to torture or other cruel, inhuman or degrading treatment or punishment.

v  Cont. "Such protective measures should, as appropriate, include effective procedures for the establishment of social programmes to provide necessary support for the child and for those who have the care of the child, as well as for other forms of prevention and for identification, reporting, referral, investigation, treatment and follow-up of instances of child maltreatment described heretofore, and, as appropriate, for judicial involvement".

vi  UNCRC (Article 6) States Parties recognize that every child has the inherent right to life [and] States Parties shall ensure to the maximum extent possible the survival and development of the child.

vii  UNCRPD (Article 10) States Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.

viii  Schmidt, E B. (2007) "Making Someone Child-sized Forever?: Ethical considerations in inhibiting the growth of a developmentally disabled child" Clinical Ethics 2 (1): 46-49.

ix  C.f. Stansfield, A J, Holland, A J & Clare, I C H. (2007) "The Sterilisation of People with Intellectual Disabilities in England and Wales during the period 1988 to 1999" Journal of Intellectual Disability Research 51 (8): 569-579.

x  The Telegraph Online (2007) "A Genuine Moral Dilemma, Say doctors":

http://www.telegraph.co.uk/news/worldnews/1538647/A-genuine-moral-dilemma%2C-say-doctors.html

xi  Daily Mail, (2007) Why I Want Surgeons to Remove my disabled Girl's Womb, Monday, 8 October 2007: 5.

xii  The Daily Telegraph (2007) Daughter Who Must Never Grow Up.

xiii  Daily Mail (2007) Truly Humbling, Friday, 12 October 2007: 30-31.

xiv  Tom Shakespeare writes that "if it is permissible to alter surgically disabled people for the convenience of their caregivers, this suggests that disabled bodies are objects without value and beauty and not worthy of respect ... No clear evidence appears to have been provided in either case [Ashley X or Katie Thorpe] to prove that growing to adult stature or having normal female body shape or menstruation will be harmful or distressing to the individual, as opposed to inconvenient or confusing to her caregivers".

xv  UNCRPD (Article 7) States Parties shall take all necessary measures to ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children [and] In all actions concerning children with disabilities, the best interests of the child shall be a primary consideration [and] States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.

UNCRPD (Article 15) No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation [and] States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.

xvi  UNCRC (Article 12) States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child [and] For this purpose, the child shall in particular be provided the opportunity to be heard in any judicial and administrative proceedings affecting the child, either directly, or through a representative or an appropriate body, in a manner consistent with the procedural rules of national law.

February 2009





 
previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2009
Prepared 20 November 2009