Close to home or virtually invisible? Disabled children’s human rights

Today is International Human Rights Day, when people and organisations around the world remember and celebrate the creation of the Universal Declaration of Human Rights. I am writing this blog post with the human rights of disabled children at the forefront of my mind, as part of a series of blogs about different aspects of children’s rights being organised by the wonderful charity CRAE under the banner of ‘children’s human rights close to home’.

Where does the strapline come from? Many will recognise the words of Eleanor Roosevelt, the driving force behind the Universal Declaration, who emphasised that human rights begin:

In small places, close to home – so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends…Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world.

This year, Human Rights Day has an added significance for children as it coincides with the 25th Anniversary year of the United Nations Convention on the Rights of the Child (UN CRC). In addition the UK government’s record on children’s rights will be scrutinised by the UN Committee on the Rights of the Child in the next year – and it is also being examined on its disability rights record.

So where do disabled children find their human rights? In a number of key places:

  • The European Convention on Human Rights, made part of our law by the Human Rights Act 1998, includes vital protection for disabled children’s private and family lives (Article 8) and their right not to be denied access to education (Article 1 of the First Protocol)
  • The UN Convention on the Rights of the Child (UN CRC) is the most ratified human rights treaty in the world and sets out the rights that all children enjoy. Article 23 states that disabled children ‘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’ and that governments should ‘recognise the right of the disabled child to special care and ensure the disabled child has effective access to education, training, health care, rehabilitation, preparation for employment, and recreation opportunities’. However disabled children need and should benefit from all the rights in the Convention on the Rights of the Child – including the right to play (Article 31), the right to express their views freely and have them taken into account (Article 12)  and the right not to be separated from their parents against their will unless strictly necessary (Article 9).
  • The UN Convention on the Rights of Persons with Disabilities (CRPD), the first human rights treaty of the 21st century, applies to all disabled people but again contains a specific Article on disabled children – Article 7, which requires the government to 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’. One of the General Principles of the CRPD (Article 3) is ‘Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities’. Article 7(3) mandates that disabled children 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’.

A central feature of both the UN CRC and the CRPD is the requirement to treat disabled children’s best interests as ‘a primary consideration’ in all decisions affecting them (Article 3(1) UN CRC; Article 7(2) CRPD). This means that in all actions and decisions by the state affecting disabled children their interests should be considered, understood and taken as the starting point in the decision. As such decision makers will need to communicate with disabled children and those close to them, including their families, to understand children’s views about what is best for them. This is also a specific requirement of Article 12 UN CRC and Article 7(3) CRPD.

So how as a society are we measuring up to the task of ensuring that disabled children can realise their rights? Not great. The recent State of Children’s Rights in England 2014 report by CRAE has a chapter on ‘Children with Special Educational Needs and Disabilities’ (Chapter 9). Its findings include that:

  • Disabled children have been ‘virtually invisible’ in the policy debates about Fulfilling Potential, the government’s disability strategy.
  • To date, there has been no government-led public awareness-raising campaign focused on the rights and needs of disabled children.
  • Disabled children face a number of barriers which make it harder for them to participate in different areas of life. A recent survey carried out by Mumsnet and Scope found that four in ten parents said that their disabled children “rarely” or “never” have the opportunity to socialise and mix with children who are not disabled.
  • In 2014, only 28% of local authorities in England reported having a sufficient supply of childcare for disabled children in their area.
  • Pupils with special educational needs still make up 68% of all permanent exclusions from school.
  • There have been significant reductions in expenditure on short breaks services and in 2013, Mencap reported that eight out of 10 families had reached breaking point due to a lack of short breaks.

The evidence of systemic breaches of disabled children’s human rights continues to pile up:

  • Far too many disabled children are not ‘close to home’ at all – they are placed in segregated residential institutions because there is no or no sufficient community support to meet their needs. The case of Josh Wills is just one example of a disabled child placed hundreds of miles from home simply because of the failure of local services properly to meet his needs. Happily, Josh has now come home – but the evidence is that hundreds of disabled children remain in Assessment and Treatment Units where they are out of sight and reach of their families and loved ones.
  • All children have the right to a ‘standard of living adequate for the child’s physical, mental, spiritual, moral and social development‘ (Article 27 UN CRC). Contact a Family recently published its Counting the Costs 2014 report which showed that the number of families with disabled children in the UK going without food has doubled in the last two years, while nearly a third of families with disabled children are going without heating.
  • The Equality and Human Rights Commission (with its partner commissioned in the devolved nations) has just produced an interim report on what progress is being made with implementation of the CRPD in the UK. In relation to Article 7 (disabled children), the report concludes that The UK Government’s disability strategy and action plan, Fulfilling Potential – Making it Happen, does not set out a comprehensive plan for the inclusion of disabled children in society. It is also unclear whether the needs of disabled children have been included in national disability or children’s strategies. Nor is there an indication of how disabled children have been involved in the development of national policies and strategies for disability and children.‘ The report also notes the disproportionate rates of poverty and entry into state care experienced by disabled children and invites the UN Committee to examine these issues.

Is there any silver lining? Well, the Children and Families Act 2014 does bring some benefits to disabled children and families – although it does not deliver anything like the fully joined up system which is required. The courts are increasingly willing to hear challenges that the human rights of disabled children and adults are being breached – see for example the upcoming Supreme Court hearing in January on whether the rule which suspends payment of Disability Living Allowance when a disabled child is in hospital breaches Articles 8 and 14 of the European Convention on Human Rights (the family in the appeal have spoken powerfully about the unfairness of this ‘DLA Takeaway’ rule). Judicial review and legal aid remain available (despite the government’s best efforts) to challenge the coming cuts to children’s services budgets if they are adopted unfairly and unlawfully.

We are still however very far away from the vision of Eleanor Roosevelt that every disabled child will have ‘equal justice, equal opportunity, equal dignity without discrimination’. The government needs to act on the recommendations from CRAE, the EHRC, Contact a Family and many other expert bodies in the reports summarised above so that we can live up to the vision of the Universal Declaration and UNCRC and ensure that disabled children’s human rights have meaning where they matter most – “in small places, close to home”.