Scottish Human Rights Law Group

The following briefing paper was written by Zoe Picton-Howell  in June 2008 for the benefit of Scottish NGO delegates appearing before the United Nations Committee on the Rights of the Child and for the benefit of that Committee, when considering the implementation of the UNCRC in the UK. The paper highlights some of the difficulties faced by Scotland’s disabled children in fulfilling their UNCRC rights.

(c) Zoe Picton-Howell 2008

Briefing Paper for NGO Delegates (Scotland) 2008 to the United Nations Committee on the Rights of the Child on human rights and the disabled child in Scotland

Disabled children are virtually invisible from the UK reporting process since 1994.

Despite the UNCRC expressly recognising disability as a human rights issue and the whole Convention applying to disabled children little reference is made to the position of disabled children in any of the UK government or UK NGO reports, or in the Committee’s concluding Observations.   This is despite that fact that disabled children face disproportionate discrimination in realising their convention rights, such as the right to education, the right to life, the right to healthcare, the right to a family life, to mention just a few.  Disabled children in the UK face abuse of their Convention rights on a daily basis.

While the following highlight some of the key concerns for disabled children in Scotland it should be remembered that all issues raised in the NGO report apply equally to disabled children.  Moreover, the purpose of this briefing is to give delegates and others a taste of some of the problems faced. Many of the other human rights problems faced by disabled children in Scotland are not addressed due to the need for briefness.

Chapter 1- General Measures of Implementation

1.2 Training on provisions of UNCRC

This is issue is particularly pertinent in relation to children with disability. Many essential services for children with disability are fundamentally services which put the children’s UNCRC rights into practice.  Ignorance of these rights on the part of service providers contributes to services for disabled children in Scotland being viewed as voluntary or charitable in nature, rather than legal rights.  For example, disabled children with significant health problems needing one to one care at school are frequently denied access to school due to nursing or care staff being unavailable. Parents of disabled children are also often subjected to considerable hostility from service providers when they try to ensure their children’s rights are met.  For example, a parent being sent a letter by a health board reminding her of the board’s policy of zero tolerance of aggression and violence when the parent had simply raised a legitimate complaint about the treatment of her child in a reasonable manner.

1.3 Measures taken or foreseen to make the principles and provisions of the UNCRC widely known to adults and children.

By way of example, no information about the UNCRC is freely available at Edinburgh’s Sick Children’s Hospital.

1.4 Data Collection, monitoring implementation of the UNCRC, allocation of resources

The UK government made the sum of £34 million available from November 2007, for use in Scotland for the benefit of disabled children.  A Freedom of Information request to the Scottish government shows that there is no record of how or where this money has been spent and indeed, whether it has been used for the benefit of disabled children, as intended.

Chapter 2- General Principles

2.1 Non-discrimination

This issue is self evidently particularly pertinent to disabled children.

Chapter 4 – Family Environment and Alternative Care

A large percentage of disabled children are “looked after” in a variety of ways.  There are a number of particular problems children and their families face.

4.1 Many children are assessed as being entitled to respite care by a social worker but the care is then not provided or far less care is provided, the families being told funding is unavailable for the care.  Some local authorities use assessment scales which make it difficult for children with severe disability and complex health problems to obtain appropriate care.  Care is awarded on the basis of a points system, which is inflexible.  For example, points are awarded if there are additional children in the family or in two parent families if both parents work.  The systems do not however take into consideration the fact that the reason why there may be no other children in the family or one parent is unable to work, namely the very high level of care required by the disabled child.  The result being that children with lesser disability and health needs are allocated more care than children with greater needs.  Likewise, where a child’s disability or health is so severe that the child requires one to one care at school, some local authorities deem this care to be respite care for the family and refuse further or less care at other times, despite the fact that the child has a much higher level of need than other children and despite the fact that care in school is not regarded as respite for other families.  Finally, local authorities often include drug or alcohol abuse by the parents in the assessment criteria, which while a valid reason for support to be given to a family, the support is needed because of the parent’s drug and alcohol problem, not necessarily because of the child’s disability.  Problems arise if the local authority has a fixed budget for respite care for disabled children which rather than being spent to meet disabled children’s needs, is used to meet the needs in the family resulting from drug and alcohol abuse, which should be funded separately.

4.2 In some authorities pressure is put on families for respite care to be provided for their disabled child in a residential unit, rather than in the family home, when the family would prefer the care to be provided in the home.  Families are told that they can have care or more care if the child goes into a residential unit.  This happens even in situations where providing care in the home would be no more expensive.

4.3 A further issue of concern is the policy of using health care assistants to care for children with very complex and life threatening health conditions, rather than registered nurses.  Health care assistants can very competently care for disabled children in good and stable health, but their lack of in depth knowledge and training make them unsuitable and unsafe to care for children who are unwell and unstable.  Current professional body guidance indicates that healthcare assistance should not care for such children unless under the direct supervision of a registered nurse.  Increasingly health care assistants are caring for such children unsupervised, alone in the child’s home, overnight and in the child’s school.  There is also a question mark as to whether NHS professional indemnity insurance covers such workers in this situation.  There are known cases of children in Scotland coming to harm as a result of this practice.

CHAPTER 5 – BASIC HEALTH AND WELFARE

5.1 Child Poverty

55% of families in the UK with a disabled child live in or on the margins of poverty.

16% of mothers of disabled children are in paid employment compared with 61% of others.

Families with disabled children face large levels of expenditure which is unmet.  For example, even where public funding is available for high cost items such as chair lifts or extensions to houses a disabled child’s family often has to meet at least 25-50% of the costs, running into several thousands of pounds.

The current level of carers allowance for a parent caring for a disabled child is £50.55 a week, which is reduced by certain other benefits and is only payable to those earning under £95 a week.  Carers allowance is not paid if a child is in hospital for more than 12 weeks in a 26 week period, irrespective of whether a parent continues to care for that child while he or she is in hospital.  This sum is woefully inadequate.

No additional payments are available if a child has, for example, a health condition incurring higher than normal expenditure, for example a child who has frequent hypothermia requiring a family to incur very high heating bills throughout the year.

CHAPTER 6 – EDUCATION, LEISURE AND CULTURAL ACTIVITIES

6.1 Education

Reference has already been made (para 1.2) in the difficulties experienced by children requiring one to one support at school accessing education.

There are a number of concerns about the Education (Additional Support for Learning) (Scotland) Act 2004 (“ASLA”).  The Act is currently subject to a review.  A key concern is that section 4 (2) (b) of the Act is in breach of Article 14 the European Convention of Human Rights (ECHR), taken in conjunction with Article 2 or Protocol 1 of the ECHR.  The section states that educational authorities do not have to do anything which would “result in unreasonable public expenditure being incurred”.  Under Article 2 of Protocol 1 ECHR and under earlier UK and Scottish education acts, the question of unreasonable expenditure only arises in circumstances where parents have expressed a preference with regard to their child’s education.  Under ASLA it arises in all circumstances.  The result is that children with additional support needs face discrimination as allocation of resources to them is curtailed in all circumstances, whereas for children without additional support needs, it only arises in circumstances of parental preference, resulting in the provision breaching the ECHR.

A further problem with is that children with additional support needs are often taught by teaching assistants rather than by qualified teachers meaning that the children with the most complex educational needs are taught by the least qualified staff.  Moreover, research has shown that low expectations of the potential of disabled children especially among staff in mainstream schools, means that many disabled children are not fulfilling their potential.

6.2 Cultural and Leisure Activities

Disabled children face great difficulty in accessing cultural and leisure facilities.  Examples include parents of disabled children being told that their child can not join scout or guide groups or being told that they can join but will have to leave “if any of the other children or their parents complain”.

Disabled children are often discouraged from taking part in mainstream activities and told to join activities, where they exist for disabled children.  Such activities tend to be limited and meet the needs of only a few children.  Children who are cognitively bright but have complex disability and health problems face particular difficulties in this regard, being denied access to mainstream activities, but with activities for their disabled peers being geared to children with severe cognitive difficulties.  Children on the autistic spectrum and children with severe behavioural problems also find a persistent lack of provision.  Part of the problem is that disabled children are often considered to be a single group, rather than a diverse mix of individuals, with a range of interests, needs and abilities, just like their non-disabled peers.

Additional Issues

Article 12 Disabled children face disproportionate difficulty in having their views heard.  Firstly, they are often simple forgotten.  Disabled children often face much greater difficulty in communicating.  Adults are much more inclined to place less weight on the views of a disabled child, irrespective of the child’s level of understanding.  In legal actions concerning children, the Courts tend to seek the opinion of a pediatrician as to the level of understanding of a disabled child. However, research has repeatedly shown that medical professionals consistently underestimate the cognitive ability of disabled children, compared with, for example, the children’s teacher, with the views of the teacher ultimately proving to be more accurate.

Article 23 Although applying to all parties and not just the UK, the Committee’s attention should also be drawn to the problems intrinsic in Article 23 itself.

Firstly, Article 23 states that “a mentally or physically disabled child should enjoy a full and decent life”. The choice of the word “should” in Article 23, rather than the more emphatic “shall” used in other articles of the UNCRC, makes Article 23 aspirational rather that prescriptive,  weakening its effectiveness. Article 23(1) also provides a right to the disabled child to special care “subject to available resources”.  This imposes a resources restriction on the rights of disabled children which is not imposed on similar rights for other children.  Arguably the UK has misinterpreted the wording in the Convention.  Interpreting “the maximum extent available”, more as a “get out”. Using lack of resources as an excuse not to meet the human rights of children, rather than a stipulation that the UK should ensure that the maximum of resources are used.   Indeed, parents or disabled children are frequently told lack of resources is the reason why their child is not receiving services to which they have a legal entitlement. The final difficulty with the Article is that the human rights of disabled children are too often only considered in relation to it, rather than in relation to the Convention as a whole.

© Zoe Picton-Howell

5^th June 2008

The UK government’s report to the UNCRC is available at http://www.unicef.org.uk/aboutus/uncrcukrpt.pdf

The Scottish Government report to the UNCRC is available at

http://www.scotland.gov.uk/Publications/2007/07/30114126/0

The Scottish NGO report is available at

http://www.sacr.org.uk/images/NGO%20Alternative%20Report%20Scotland%202008.pdf

The joint (Scotland, England, Wales and Northern Ireland) Children’s Commissioners report is available at

http://www.sccyp.org.uk/UK_Childrens_Commissioners_UN_Report.pdf

The UNCRC Committee’s Concluding Observations on the UK of October 2008 are available at

http://www2.ohchr.org/english/bodies/crc/docs/AdvanceVersions/CRC.C.GBR.CO.4.pdf

Earlier UNCRC Committee reports on the UK (1994, 1995, 1999 & 2002 ) are available at http://www.unicef.org.uk/pages.asp?page=95&nodeid=ukreport&section=

Details of the reporting process are available at

http://www2.ohchr.org/english/bodies/crc/index.htm

The Scottish Government’s response to the UNCRC Committee’s Concluding Observations is available at

http://www.scotland.gov.uk/Publications/2009/08/27111754/2