Medical Needs and Inclusion
For Disabled children and Young people to be properly included in education and social life it will require: removal of barriers with provision of individual adjustments; and to have the support they want for the impacts of their impairment on the functioning of their body and mind so they can thrive in their own terms and achieve equity.
The Inclusion Movement
The Inclusion Movement campaigning for human rights must recognise the education of Disabled people as a human right. They must find a way of recognising the needs of Disabled children, Young people and their families – to take control of specific requirements for our impairments. Developing notions of self-worth, mutual-worth, empowerment and agency are crucial. At the same time we must continue to work to create an environment which accepts and welcomes difference, by removing notions of normality (with their eugenicist foundations, stereotypes and stigma) and challenging all forms of bullying.
Impact of COVID-19
The tendency to ration medical support via triaging or encouraging ‘do not resuscitate’ statements for Disabled people is evident in the current COVID-19 pandemic. This uncovers the tip of an iceberg of moral and ethical judgements based on medical model thinking and not on the human rights principles of equal treatment, regardless of impairment, espoused on the surface. During this pandemic Disabled people have been widely ignored across UK Government departments. COVID-19 has revealed the extent of the difficulties and struggles of Disabled children in accessing education as well as learning support, creating inequality for them within the education system.
We spoke with Akosua Amoteng from Waltham Forest, a parent to 13-year old son who attends a mainstream school. Her son has learning difficulties and is ventilator dependent. Akosua stated:
“my son is shielding, and we [parents] support him with his schoolwork and medical needs at home.”
She also shared examples about the types of support the school is currently providing for home schooling. This includes lessons sent by e-mail, weekly phone calls to find out how he is coping and google sessions online. There didn’t appear to be any differentiation of the educational material issued to her son and the family are having to provide the support. Akosua has further worries about her son’s safety to return to school and said she wants to:
“know what measures will be put in place to keep him safe”
because she will not put her son at risk of getting virus (COVID-19). Akosua continued to speak about the support provided by the school when her son transited from primary to secondary school. She describes this as:
“a tough experience because there was a change to his TA [Teaching Assistant] and challenges with his behaviour”.
Unfortunately, there seems to be a disconnect between primary and secondary school in the process to ensure the continuation of the same type of support. Akosua felt that the experiences affected her son’s settlement in Secondary school- the new arrangements for Akosua’s son was not to:
“have one-to-one TA but to have access to a team of different TAs and this was hard for my son to adjust to”.
She also spoke a (little) bit about her son’s painful experience in developing relationships with other peers and making friends at school.
The current pandemic has created further barriers for Disabled people which further exasperated the ten years of austerity and forty years of neo-liberal, free market-based capitalism have left our public services hollowed out. Our hospitals, social care, environmental health, benefits and social housing are under-invested. Important rational decisions for the public good were not taken, reducing the UK’s capacity to deal with not only the pandemic but a myriad of issues including public health.
Child and Adolescent Mental Health Services (CAMHS) are another example of the pressures put on young people. The austerity and education reforms have ratcheted up the levels of mental health issues. These services have been reduced and inevitably rationed. Specialist CAMHS are NHS mental health services that focus on the needs of children and young people can provide really useful support . They’re multidisciplinary teams often consisting of: psychiatrists, psychologists, social workers, nurses, support workers, occupational therapists, psychological therapists – this may include child psychotherapists, family psychotherapists, play and creative art therapists, primary mental health link workers and specialist substance misuse workers. One in ten children between the ages of five and sixteen have a clinically diagnosable mental problem, and many go into adulthood with serious unresolved problems. Indeed 50% of mental health problems in adults were identifiable by the age of 14.
A Survey by Young Mindsin 2016 revealed the government had invested an extra £1.4 billion up until 2020, in order to “transform” CAMHS in line with the recommendations of the 2015 Future in Mind report. Despite huge public concern about children’s mental health, CAMHS currently account for just 0.7% of NHS spending, and around 6.4% of mental health spending. Research into the responses of 199 Clinical Commissioning Groups (CCGs) from Freedom of Information requests has revealed that:
- Fewer than half of the CCGs who responded were able to provide full information about their CAMHS budgets. If CAMHS services are to improve, there needs to be far greater accountability about where money is being spent.
- In the first year of extra funding (2015-16), only 36% of CCGs who responded increased their CAMHS spend by as much as their additional government funds. Nearly two-thirds (64%) of CCGs used some or all of the extra money to backfill cuts or spend on other priorities.
- In the second year of extra funding (2016-17), only half of CCGs who responded increased their CAMHS spend by as much as their additional government funds. The other half are using some or all of the extra money for other priorities.
The 2014 Children and Families Act introduced a new joined up way of holistically meeting Educational, Health and Care Needs. Some of us had been trying to get joined up support for Disabled children and young people since 1997. It was evident the under-funded and hard-pressed health service would not be able to properly support children’s medical needs. In May 2016 the two inspectorates, Ofsted and the Care Quality Commission (CQC), started a new type of joint inspection. The aim is to hold Local Areas to account and champion the rights of children and young people.
The report ‘What is the Outcome?’ revealed some disturbing findings from the 131 Local Areas inspections completed, 63 have to reply to a Written Statement of Actions, (+5 more DfE are to determine). In other words, they are not carrying out the basics required by the Children’s Act Part 3. One of the key weaknesses identified was ‘poor relations with parents, a poor local offer, lack of joined up working especially with health and weak diagnosis pathways.’ These experiences were before the Coronavirus lockdown. However, there is a removal of legal rights for an EHCP by the Coronavirus Act 2020 which has now been replaced by Local Authority ‘best endeavours’.
It is not just referral and support from CAMHS that is in short supply. Speech and language therapists, physiotherapists and occupational therapists are usually supplied by a service contract between the Local Authority and the NHS. These provide services up to an age cut-off to both mainstream and special schools and are therefore in short supply. A way of spreading the scarce resource is the ‘Consultancy Model’ where a clinically trained practitioner assesses and reviews the needs of the child and then develops a programme which the Teaching Assistant delivers. This can work but it needs to be integrated into the curriculum and school day and reviewed regularly. Independent special schools increasingly offer direct therapy and an on-site team of multi-disciplinary therapists, which leads to an increasing number of parents seeking these placements at Tribunal – at great cost to the Local Authorities (LA). The answer is for LAs to increase the provision in their schools for therapies where needed. This will require an increase in the Higher Needs Budget for LAs.
Austerity was previously used as the reason to cap this, however it is now clear it’s about the lack of political will for the inclusion of Disabled children.
The 2014 Act only provided legal redress to education protection neglecting Care and Health issues. The DfE set up a pilot in 2018 for SENDIST Tribunal to rule on Care and Health provision. They have dealt with more than 1500 The 2014 Act only provided legal redress to education protection, neglecting Care and Health issues. The DfE set up a pilot in 2018 for SENDIST Tribunal to rule on Care and Health provision. They have dealt with more than 1500 cases and unofficial feedback is overwhelmingly positive, as the trial has provided increased accountability for Care and Health Agencies. The Government has recently agreed the National Trial will be extended to August 2021. Lodge cases with SENDIST if you are not getting justice in the provision for Education, Health or Care for your child or young person up to 25.
We know that inclusive education has not been regarded as a priority issue the SEND system or in the UK Disabled People’s Movement. The social model/human rights model rightly puts the focus on society to address the historically rooted and still dominant oppression of disabilism we face. This often prevents us from talking about and reclaiming the means of managing our impairments. The long and growing attachment to special educational needs, often sought by parents and encouraged by professionals, and existing legal framework (SEND), is a reaction to this unresolved contradiction.
Richard Rieser & Michelle Daley
Directors, World of Inclusion & ALLFIE