Disabled Children Do Not Have Rights
A provocation paper
Professor Sir Tom Shakespeare FBA, London School of Hygiene & Tropical Medicine
Who are disabled children?
A useful rule of thumb is that about one in 20 children have significant disabilities. Many will have special educational needs, although not every child with a special educational need will have a disability. But in reality, this is not a simple question:
- children rarely identify themselves as disabled; they think of themselves, and want to be thought of, simply as children. Often, the only thing they have in common is that they have experienced bullying (according to the Department for Education research with 14 year olds, one in four young people with SEN experienced actual or threatened violence in the last year (Lessof et al 2016), while the Anti-Bullying Alliance study in 2016 found that children with disabilities and / or SEN were around twice as likely to be bullied)
- disability comes in different forms — think hearing, visual, mobility, learning — and in different degrees. The definition used determines the number of people you think are affected
- autism in particular seems to be more frequently identified (Baio 2018) — but it is not clear whether this is an actual increase in prevalence
- different sectors approach the issue of disability differently: health starts with diagnoses (and talks of ‘learning disabilities’); education data starts with ‘special educational needs’ reported by each school (and talks of ‘learning difficulties’) ; social care is different again
- So 253,680 children in England (2.9% of the school population) have a statement of special educational needs (SEN) or Education, Health and Care plan (An EHC plan is a legal document that describes a child or young person’s special educational, health and social care needs). A greater number, more than one million, have some form of special educational needs, but this could be for different reasons, such as social exclusion. More than 28% of those with EHC plans have autism; 24% of those who receive SEN support have moderate learning difficulties. The Children and Families Act 2014 expanded the population covered from age 0–19 to age 0–25, to reduce the previous ‘cliff-edge’ end of support at 19, but funding has not proportionately increased.
What is a right?
Putting to one side the historical debate about natural rights means focusing on those rights that derive from legal statements, such as the UN Convention on the Rights of the Child (1989), the UN Convention on the Rights of Persons with Disabilities (2006), or the UK Equality Act (2010). In terms of these statutes and treaties, children with disabilities have rights to education (CRPD Article 24, CRC Article 28), they have the right to home and family (CRPD Article 23), they have rights to be heard (CRC Article 12), they have the right to health (CRPD Article 25, CRC Article 24), they have the right to a decent standard of living (CRC Article 27), they have the right to live in the community (CRPD Article 19).
Rights take different forms, and most of these statutes combine different forms of rights. So, some rights are about civil and political matters — freedom of expression, for example, whereas some are about social and economic matters — the right to health, for example. Some rights are claim rights and some are liberty rights: disabled children have a liberty right to be heard, whereas receiving appropriate habilitation implies a claim on the resources of the state. This last distinction relates closely to the difference between positive rights and negative rights: involuntary sterilisation is a violation of a negative right to non-interference, for example, because it permanently takes away an individual’s freedom to procreate, whereas failure to provide education is violation of a positive right to a public service. Whatever approach you take to classification, rights should be practical and experiential, not merely conceptual or symbolic. If someone has a right to something, they should have an expectation of getting it. Rights are fundamental norms of how things should be, or they are nothing. The legal theorist Ronald Dworkin (1984) argues that rights are trumps. But if you cannot access a particular social good, then in what sense is it meaningful to say that you have a right to it? Ostensibly, you have human rights. But in practice: not. The rest of this Provocation outlines these failures to meet rights.
Disabled children don’t have a right to be heard in discussions which affect them. In England and Wales, the system of provision has been absorbing the reforms heralded by the Children and Families Act (2014). This legislation brought in an ethos of co-production. Children become independent actors from age 16. But in practice, research finds limited entitlements to choice and participation (Harris and Davidge 2019). For example, it is not easy for either parents or children to engage with the system despite the network of 151 Parent Carer Forums set up the Department for Education. In particular, the agency of children and young people with disabilities depends on their parents — especially when a child is young. Disabled children are excluded, for example, from discussions about their EHCs (replaced the Statement of SEN a few years ago). Often decisions are made by policy-makers and professionals, rather than people directly affected. But even at best, decisions are usually made by parents, not children themselves: “Middle class parents mobilise social, cultural and economic capital to navigate the system” says Professor Sheila Riddell. But even fewer children with disabilities are heard in these debates. It was a policy recommendation that every Local Authority set up a forum of children and young people: by 2018, just over half of the authorities responding to a survey had set one up. Another example: many mainstream schools have schools councils, but rarely do these include children with disabilities.
Disabled children are not afforded their right to education. One reason is that so many are waiting for a school place: 8,000 children with SEND currently — which is a doubling since 2017. Some schools have been found guilty of off-rolling — where they persuade parents to remove their children from the school when it is in the school’s interests, not the child. Another reason is that so many are excluded from schooling. Permanent exclusions have increased to 7,720 in 2016/17, temporary exclusions have increased to 381,865. “Persistent disruptive behaviour” is the commonest reason given for exclusion. Pupils with SEN support had the highest exclusion rate, six times higher than children without SEN. Children out of school are meant to go to Pupil Referral Units for short periods, but these Units are ending up as permanent destinations. Although they often do good work, in many cases they are now being closed because of cuts. Cuts to public spending have affected Local Authorities who in turn have tried to cut SEN provision. Although there is more money in the ‘high needs block’ overall, because demand has also increased, funding has dropped by 17% per pupil across England since 2015, according to IPPR North (Hunter, 2019). It is convention to talk in terms of “challenging behaviour” or “challenging children”. But in practice, it is often schools which are failing children, who then behave badly, and are then excluded. The problem is solved by removing the victim and leaving the structure intact. Children challenge our provision, which fails them.
Disabled children do not always have a right to health. Most grievously, young people with disabilities such as Connor Sparrowhawk and Oliver McGowan have died unnecessarily in NHS care due to their poor treatment. More generally, children’s mental health services are in crisis, after years of reduced budgets. One in five children with mental health conditions wait over six months for contact with a mental health specialist. Nearly three-quarters of children with mental health conditions also have a physical health condition or developmental problem, a third have special educational needs. Local authorities and NHS are meant to work together to provide a unified system and better use resources. But neither is in charge, and the danger is that a disabled child’s health needs are unmet, in particular the specialist services — such as speech and language therapy — that a child might need.
Disabled children do not always have a right to live in the community. While institutionalisation was meant to be a thing of the past, in England, there are around 250 children with learning disability or autism confined in children’s mental health wards for months and sometimes years, often locked away, sometimes sedated (Children’s Commissioner 2019). Long stay in unfamiliar settings far from home can be traumatic and distressing for these children with disabilities, and also for their families. It contravenes Article 19 and Article 23 of the Convention on the Rights of Persons with Disabilities. Care quality is variable. Confinement might have been avoided if community support with challenging behaviour had been provided earlier. Parent carers do the vast majority of support for children with disabilities: more than half of them have been forced to give up their job to care for their child. Only 4% of parents say they receive the right support, according to research by the Disabled Children’s Partnership.
Good practice is everywhere
There are islands of good practice in disability and SEN, often carved out by very committed individuals. There are health professionals who spend enough time with children with disabilities to understand them properly, in the calm context of a careful consultation. There are many teachers and classroom assistants who can enable children with learning difficulties to benefit from genuine inclusion in classrooms. Even more commonly, there are parents and siblings who enfold disabled children in loving families where they are valued for who they are, and where their best is good enough. We need to build bridges between these families and these professionals and these services. We also need to learn from countries — such as Finland — who are doing so much better on special education than UK.
Many are preoccupied with the gap between children with disabilities and other children. In a society fixated on measurement, then achieving certain milestones feels significant. But other specialists in this field have pointed out that this emphasis is misplaced. Paradoxically, it’s not always right to emphasise making disabled children catch up with non-disabled children. What matters instead is for disabled children to thrive, and grow, and learn. This is a universal possibility — to strive to be better — but at the same time, it would be wrong for any child or adult to feel they are not good enough as they are.
There is abiding goodwill to do better by disabled children, many skilled professionals and even more loving parents. The discourse that is deployed about childhood disability has changed: policy-makers and professionals at least use the language of rights. Storytelling — of good and bad practice — has brought children to attention, so problems cannot be blamed on ignorance (Runswick-Cole and Ryan 2019). But evidence is widespread that there has been no consistent change to practice. Funding cuts mean quality of staff cannot be maintained. When austerity hits, the rights of children suffer.
But it feels more than simply the same lack of resource that affects all public services: it’s not a matter of just schools or NHS or social care. It feels like an over-arching neglect which hurts the hearts of families and all who support disabled young people. Children with disabilities seem excluded and denied rights because they feel an afterthought in the wider societal conversation, burdens to be handled rather than participants and moral equals to be listened to and respected.
Not that any of this is simple. There are sometimes challenges in enabling disabled children to have rights. Partnership with parents, investment in staff and systems, respect are required. In particular, it requires creativity to ensure that children can understand and exercise their rights. Without this, disabled children do not have a right to a future, simply because they have a disability that our system fails to accommodate in a humane and rights-based way. It is indeed a provocative statement, but there are good reasons to conclude that children with disabilities do not have rights in our society. Many disabled children lead happy, successful lives. We know it can be done, and we mostly know how to do it. Now we need an inclusive attitude, as well as sufficient resources and the appropriate services, which are too often denied to disabled children and their families.
Anti-Bullying Alliance Wellbeing Indicators: wave one report. https://www.anti-bullyingalliance.org.uk/sites/default/files/field/attachment/Bullying%20and%20Wellbeing%20Report%20-%20wave%20one%20collection%20-%20March16%20-%20FINAL.pdf (consulted July 8 2019)
Baio J et al (2018) Prevalence of autism spectrum disorder among children aged 8 years — Autism and developmental disabilities monitoring network, 11 sites, United States, 2014, Surveillance Summaries 67 (6): 1–23, Centers for Disease Control https://www.cdc.gov/mmwr/volumes/67/ss/ss6706a1.htm?s_cid=ss6706a1_w (Consulted July 8 2019)
Children’s Commissioner. 2019. Far less than they deserve: children with learning disabilities or autism living in mental health hospitals. London: Children’s Commissioner for England.
Dworkin, R., 1984. Rights as trumps, in Waldron, J. (ed.) Theories of Rights, Oxford: Oxford University Press: 153–67.
Hunter, J. 2019. Plans That Work: employment Outcomes For People With Learning Disabilities. IPPR North. https://www.ippr.org/files/2019-04/plans-that-work-april19.pdf
Lessof C et al. 2016 Longitudinal study of young people in England cohort 2: health and wellbeing at wave 2. Department for Education. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/599871/LSYPE2_w2-research_report.pdf (Consulted July 8 2019)
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Runswick-Cole K, Ryan S. 2019. Liminal still? Unmothering disabled children, Disability and Society, DOI: 10.1080/09687599.2019.1602509