Inclusion Now 68 | Spring 2024

A VOICE FOR THE INCLUSION MOVEMENT IN THE UK

A VOICE FOR THE INCLUSION MOVEMENT IN THE UK

Lucy Wing: I will not give up until all Disabled children are free from torture p3

Telepresence robots in education: Edmore Masendeke p8

Inclusion in Australia and Ireland: Richard Rieser p 10

Improving EHCPs Sharon Smith and Michelle Daley p 14

Commonwealth Youth Ministers Meeting: Saista Parwin p 17

Ugandan education system barriers: Kihembo Wilbert p 20

Legal Question Health budgets p 27

Welcome to Inclusion Now 68, with Spring 2024 inclusive education news. Opening this edition, on Page 3, Lucy Wing, a Young Disabled campaigner and participant in ALLFIE’s Our Voice project, tells us about the opportunity she had to speak in Parliament about ending the segregation of Young Disabled people in residential education settings. This is a difficult but important read that raises awareness of the historical and ongoing abuse of Disabled people in residential settings and calls for the end of these institutions. Lucy’s speech is illustrated by a Crippen cartoon (page 6)

On Page 8 Edmore Masendeke, ALLFIE’s Policy and Research Officer, highlights the omission of Telepresence Robots in the Department for Education’s statutory guidance relating to pupils who cannot attend school due to health needs. These robots currently help children to continue to attend mainstream settings remotely, maintaining connection with their peers when at home or in hospital.

Richard Reiser provides a report about progress in Australia and Ireland towards greater educational inclusion on Page 10. In the coming months there will be an ongoing debate in Australia about phasing out segregated education, and in Ireland the National Council for Special Education has launched a landmark policy advice paper recommending systemic reform that would result in all pupils being educated together in their local communities.

Michelle Daley and I then discuss the current UK SEND Change Programme on page 14, arguing that the introduction of a national template for Education, Health and Care plans holds the promise of being able to rethink assessment and documentation processes.

On Page 17 Saista Parwin provides a report and event diary from her attendance as Youth representative at the 13th Commonwealth Youth Ministers meeting in London last September, before Kihembo Wilbert, shares his story of perseverance and academic success within the Ugandan education system on Page 20. He discusses the need for greater digital inclusion to allow independence and to reduce social isolation.

Richard Reiser discusses the eugenic legacy within the UK education system and the work of Jack Tizard, whose work challenged the notions of ineducability, arguing that Disabled children could benefit from education and make progress (Page 23). The issue closes with a legal question about Health budgets within EHCPs (Page 27).

By Sharon Smith, Editorial Board

Cover images: End Torture event in Parliament in December 2023

Young person's voice

Lucy Wing: “I will not give up until all Disabled children, my siblings, are free from torture”

In December 2023, a collective of Disabled People’s Organisations and allies took the “End Torture of Disabled people” campaign to Parliament. This collective campaign aims to end the segregation of Young Disabled people in UK educational residential settings, where abuse is rife and private companies profit.

Lucy Wing is a Young Disabled campaigner and a participant in ALLFIE’s Our Voice project. She was a key speaker for the first time in Parliament and reports back.

"I never thought I would be speaking in Parliament, especially not at 21! It felt really big and scary, but the amazing community of Disabled activists made me feel safe, heard, and empowered. We’re all here to look out for each other, and I hope other Young Disabled people look at me and see they can be activists too. All of our voices matter."

There are many parts to my identity. The part of me that is a 21-year-old member of ALLFIE’s Our Voice Youth project is disappointed that despite decades of Disabled people sharing their experiences of segregation in education and organisations campaigning for change, special schools and residential institutions are still the norm for Disabled children and Young people.

The part of me that is a criminology and psychology student and an activist for ending violence against women and girls is appalled that the rates of assault and abuse amongst Disabled people are twice that of non-disabled people. Statistics show that our abuse goes on for over 40% longer than non-disabled peoples’ and that Disabled survivors are twice as likely to plan or attempt suicide due to their abuse or assault than non-disabled survivors.

The part of me that is a Disabled person is upset that people just like me, my Disabled brothers and sisters, were promised an education by the state but were instead abused by those who pledged to help them learn.

The part of me that wants to have faith in the powers that are supposed to protect us is infuriated that despite nearly 150 reports to authorities and regulatory bodies in 3 years, nothing happened. For example, Fullerton House and Wilsic Hall, two of the so-called care homes run by the Hesley Group, were rated “good” in inspections in 2018. Let me list a few of the things that Disabled children and Young people experienced at these “good” homes: it’s been reported that they were locked outside in freezing temperatures, dragged across the floor, had vinegar poured in their wounds, their medication was withheld, they were punched and kicked.

Image: Lucy Wing at the End Torture event in Parliament

Young person's voice

Those are all prime examples of physical harm. A child was fed chilli flakes and then denied water. Children were left in soiled clothes. Black girls forcibly had their heads shaved. This is the staff trying to dehumanise these kids. Others were sexually abused. Staff sat outside the doors of rooms so children were trapped inside. This is deliberate, rampant abuse and neglect. This is intersectional discrimination. This is torture. What really stuck with me was the report of a child rubbing washing up liquid on his arms so “the night staff won’t grab me”. He’d seen or experienced this enough to make a plan to avoid being hurt. That is genuinely heartbreaking.

Every part of me recognises this is wrong, and you don’t need to identify as, or be involved in any of the things I am to feel the same. We need everyone to speak up about this, because Disabled people don’t need to be moved away from their families and friends to access education. On average, the children in Fullerton House, Wilsic Hall and Wheatley House were 95 miles away from their communities, communities which are capable of providing these kids with education in mainstream schools.

Remember this grim reality. This is what we know of. Historically, the so-called care homes and special schools have been rife with abuse, assaults and negligence. And what is different now? No way near enough has changed.

We need accountability. We need an admittance of guilt. We need an explanation to why the countless reports weren’t followed up on. We need the reason why these schools were considered “good” despite evidence of abuse. We need national recognition that this is the reality, but it doesn’t have to be. You think policy changes protect children but that’s not the case unless you make sure others practice what they preach. This isn’t unrealistic. This can be stopped from happening again and I will not give up until all Disabled children, my siblings, are free from torture.

What's next?

Iyiola Olafiniham, ALLFIE’s Justice and Campaigns Officer, says: “Since there is likely going to be general election in the UK this year, ALLFIE is mobilizing the inclusive education community to make fresh demands on the main political parties. We are therefore refreshing our manifesto and calling our members and allies to action. We have started the process… ALLFIE’s manifesto will be changing, and will involve contributions from our members, our communities, our allies, our supporters and everyone who wants to see the injustice of segregation in education stopped in this country. Sign up for ALLFIE updates - we will notify you about the methods we will use to engage and solicit your input.” (ALLFIE marks International Day of Education 2024 blog)

Event quotes from the End Torture collective

- Alliance for Inclusive Education (ALLFIE) -

“It is a travesty that after more than 25 years in the education sector, I find myself increasingly supporting Disabled Young people who have been locked away in residential settings. It is embarrassing to see other countries far exceeding the UK in meeting their responsibilities under the UNCRPD, including article 15, which covers freedom from torture.” (Navin Kikabhai, ALLFIE Chairperson)

“Being dependent on help does not take away human feeling. The Young people are often isolated from those who love them with the denial of the right to make connections in the community around them. Friends who could enjoy who they are. A world where vulnerability can be seen as an asset giving the wisdom of a different viewpoint. Children and Young people continue to experience being dehumanised by so-called trusted people. When will we all be accepted as people with sensitivities like your own? We are calling for segregated provision, such as these institutions, to be phased out and for all Disabled children and Young people to be included in their communities, as a right, with the support they need. (Maresa MacKeith, ALLFIE’s Youth Parliamentary Officer)

- Ellen Clifford, Disabled People Against Cuts (DPAC) -

- Ellen Clifford, Disabled People Against Cuts (DPAC) -

“Behind these scandals is a culture that violates people’s rights and allows degrading treatment. These examples of torture and abuse are not anomalies but are part of a wider system, where physical restraint and seclusion rooms are used as common practice. Disabled children and Young people are placed in settings many miles from home, where they are traumatised, and then punished when they respond to that trauma. Thus, their distress escalates, their trauma is entrenched, and they’re told that services within the community cannot cope with them, so they become trapped within abusive institutions.”

“Behind these scandals is a culture that violates people’s rights and allows degrading treatment. These examples of torture and abuse are not anomalies but are part of a wider system, where physical restraint and seclusion rooms are used as common practice. Disabled children and young people are placed in settings many miles from home, where they are traumatised, and then punished when they respond to that trauma. Thus, their distress escalates, their trauma is entrenched, and they’re told that services within the community cannot cope with them, so they become trapped within abusive institutions.”*

- Ellen Clifford, Disabled People Against Cuts (DPAC) -

- Mark Harrison, Reclaiming Our Futures Alliance (ROFA) -

“Behind these scandals is a culture that violates people’s rights and allows degrading treatment. These examples of torture and abuse are not anomalies but are part of a wider system, where physical restraint and seclusion rooms are used as common practice. Disabled children and young people are placed in settings many miles from home, where they are traumatised, and then punished when they respond to that trauma. Thus, their distress escalates, their trauma is entrenched, and they’re told that services within the community cannot cope with them, so they become trapped within abusive institutions.”*

“I blame successive governments for failing to implement key parts of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), including articles 19 (on independent living) and 24 (on inclusive education). The last Labour government decided to listen to the lobbying voices of the segregationists and the professionals. The damage caused by that decision has been enhanced and multiplied many times by successive Conservative governments. This has made segregated education a cornerstone of their educational policies with the resulting disastrous situation we find ourselves in today, with the reinstitutionalisation of Disabled children and Young people in residential institutions”.

- Ellen Clifford, Disabled People Against Cuts (DPAC) -

Simone Aspis, Inclusion London’s Free Our People Now project -

“Behind these scandals is a culture that violates people’s rights and allows degrading treatment. These examples of torture and abuse are not anomalies but are part of a wider system, where physical restraint and seclusion rooms are used as common practice. Disabled children and young people are placed in settings many miles from home, where they are traumatised, and then punished when they respond to that trauma. Thus, their distress escalates, their trauma is entrenched, and they’re told that services within the community cannot cope with them, so they become trapped within abusive institutions.”*

“Ending Torture of Young Disabled people must begin with ending the torture of Disabled people’s brains and minds that work differently from non-disabled people. It is torture for Disabled people who identify as neuro-divergent or having learning difficulties, being forced into psychiatric hospital and subjected to medication, behaviour modification programmes, restraint and isolation, with the aim of making them ‘normal’. We need to challenge and question neuro-typical values that inform what is considered an acceptable way of living oneself. We call for legislation and policy changes that move away from locking Disabled people up within psychiatric system to live good and healthy lives in the community.”

- Ellen Clifford, Disabled People Against Cuts (DPAC) -

Claire Glasman, WinVisible/Disabled Mothers’ Rights Campaign -

“Behind these scandals is a culture that violates people’s rights and allows degrading treatment. These examples of torture and abuse are not anomalies but are part of a wider system, where physical restraint and seclusion rooms are used as common practice. Disabled children and young people are placed in settings many miles from home, where they are traumatised, and then punished when they respond to that trauma. Thus, their distress escalates, their trauma is entrenched, and they’re told that services within the community cannot cope with them, so they become trapped within abusive institutions.”*

“Today, more children are in care than ever. Councils are taking children from low-income single mothers, Disabled mothers, care leavers, mothers who report domestic violence. Children of colour and/or Disabled children are targeted, and poverty is labelled as neglect. The Support Not Separation coalition we’re part of, highlights that the massive amounts which councils pay to companies for ‘care’ placements should go to supporting mothers, keeping families together. Taking children away is torture of children and mothers –lifelong trauma. We invite everyone to support our Charter demands.”

Policy

Edmore Masendeke is ALLFIE’s Policy and Research Officer

Nothing on Telepresence Robots in DfE’s latest Guidance on Education for Out of School Children

On 14 December 2023, Department for Education (DfE) published updated statutory guidance on ‘Arranging education for children who cannot attend school because of health needs.’ This guidance, however, says nothing about using telepresence robots for education purposes for pupils who cannot attend school because of health needs. This is of particular concern to ALLFIE because this omission poses the risk of Disabled children and Young people who cannot attend school because of medical, health and other reasons being denied the opportunity to continue their education using telepresence robots within mainstream settings.

We recognise that there are Disabled children and Young people who are unable to attend school because of pre-existing conditions,

infection risks, clinical procedures, chronic fatigue problems and other medical conditions. This has resulted in too many Disabled children and Young people being placed in special schools or substandard alternative provisions such as EOTAS (Education Otherwise Than At School) and denied the opportunity to access and experience mainstream schooling. Thus, this practice is a barrier to Disabled pupils realising their right to inclusive education in mainstream settings.

Since 2018, more than 700 schools have used telepresence robots to enable children who cannot attend school because of health needs to continue their education in mainstream settings. The robot represents the pupil in class, allowing them to attend lessons alongside their peers while they are at home or in hospital. This keeps the pupil connected to the school and their peers, something which has been found

to reduce feelings of isolation and loneliness. Thus, telepresence robots can enable Disabled pupils who cannot attend school because of health and other needs stated above to continue their education in mainstream settings, instead of placing them in special schools or alternative provision.

From a social justice perspective, this addresses inequalities in education, reducing the exclusion of Disabled people from mainstream settings and contributing to the creation of an inclusive and welcoming society. We at ALLFIE see the placement of Disabled pupils who cannot attend school because of health and other needs stated above in special schools and alternative educational provisions creates inequality and is a form of injustice in society general. Telepresence robots should be used to ensure that Disabled pupils to continue realising their right to inclusive education in mainstream settings instead.

That is why the DfE’s guidance should include guidelines on the use of telepresence robots in schools. These guidelines should make it a right that every Disabled children and Young person, when they cannot attend school for any of the above reasons, should be given the option of continuing their mainstream education using a telepresence robot. This includes prohibiting Local Authorities, schools or staff from refusing to use the technology. Telepresence needs to form part of the standard schools invest programmes under technology and considered as a form of access.

The guidelines should also clearly define when, where and how the telepresence robot should be used to facilitate learning and inclusion for Disabled children while at the same time guarding against it being used as a substitute for real and meaningful inclusion. Its

appropriateness should be reviewed on a caseby-case basis with a presumption of inclusive education being the desired outcome.

The guidelines also need to make it the responsibility of local authorities to ensure that the robot is available to any Disabled pupil who needs it to continue their education for reason already stated. Thus, local authorities should be given the responsibility of acquiring robots for schools in need of them. It should not be left to parents or charity organisations to acquire and supply these robots to school. This disadvantages pupils from less resourced families, who are also more likely to experience social disadvantage.

In addition, local authorities should be responsible for ensuring that every pupil who needs to use this technology has the resources to do so. This includes having a phone or tablet, internet access and the skills to use the technology. Disabled children should not fail to access this technology because of poverty and other intersecting disadvantages. The use of robots must be considered a part of the inclusive education vision to make education work better for Disabled children and help reduce inequalities in education.

Telepresence robots can have a huge impact on the lives of Disabled people and society in general. They can be used as a vehicle for social inclusion. In the education context, telepresence robots can be used to enable Disabled pupils who cannot attend school because of health and other needs stated above to continue their education in mainstream settings, thus enabling them to continue realising their right to inclusive education. However, appropriate guidelines are required to make this a reality. This article highlights some of the issues that should be addressed by the guidelines.

Green Shoots of Inclusion in Australia and Ireland

By Richard Rieser, World of Inclusion

Reports in Ireland and Australia to Government based on examining special education and discrimination towards Disabled students demand reform. Both reflect the slow germination process of change set out in the UN Convention on the Rights of Persons with Disabilities (UNCRPD), Article 24 on inclusive education, and learning from progress towards fully inclusive systems in Newfoundland and Portugal.

The Australian Royal Commission report

The Australian Disability Royal Commission report, Violence, Abuse, Neglect and Exploitation of People with Disability, was tabled by government in the Australian Parliament on 29 September 2023.

Elly Desmarcelier, an Australian disability rights activist, wrote about the outcome of the Royal Commission in The Guardian:

“On special schools, despite the overwhelming consensus of people with disability that harm is done when children are separated from their peers without disability, the royal commission was split on phasing out segregated education. In the end, three commissioners, including two who live with disability, recommended phasing out special schools by 2051.

The next few weeks and months will see ongoing debate over whether these plans to end segregation move quickly enough and pressure will be put on governments at all levels to commit to specific timeframes. But the truth is, segregation isn’t turned on or off. We can move all Disabled people into open employment, but that doesn’t end segregation if workplaces won’t adapt to meet a person’s disability accommodations.

We can move all Disabled students into mainstream schools, but that doesn’t end segregation if parents are teaching their children that Disabled kids are a disruptive burden on the classroom.

It is on all of us to embrace our fellow human beings as equal and worthy as they are. The disability royal commission gives us a pathway to break down systems that harm people with disability.

The question remains: will the Australian people join us on a journey to breakdown the cultural barriers that harm people with disability, so that we can all benefit from an inclusive Australia?”

Between 2019 to 2023, The Australian Disability Royal Commission investigated the key areas:

• preventing and better protecting Disabled people from experiencing violence, abuse, neglect and exploitation

• achieving best practice in reporting, investigating and responding to violence, abuse, neglect and exploitation of Disabled people

• promoting a more inclusive society that supports Disabled people to be independent and live free from violence, abuse, neglect and exploitation.

The Commission was well funded and employed up to 200 people, 20% of who were Disabled. They gathered evidence in all six Australian states, and across 33 separate events. This involved gathering personal testimonies, while implementing a legal change to ensure confidentiality, as well as creditability of the evidence and statistics. The Report found many examples of discrimination across all areas, however our specific focus is on education. Overall, the Commission made 222 recommendations in Report Volume 7, introduction to findings on inclusive education (Word document)

Part A states:

“There is an increasing number and proportion of students with disability in our schools and increasing demand for higher levels of adjustment. In examining inclusive education, we discuss how a rights-based approach requires a safe, quality and inclusive school system for all students with disability. Students must be provided with effective school supports that meet a diversity of needs. Schools must promote positive attitudes and behaviours that embrace diversity and inclusion. Students should be able to achieve their individual educational goals, and positive social outcomes in and beyond school.

Today, Australian schools do not consistently deliver an inclusive education that protects students with disability from violence, abuse and neglect. Students with disability face multiple barriers to inclusive education, underpinned by negative attitudes and low expectations. Schools systematically exclude students with disability. They do this by not providing appropriate adjustments and supports to enable their participation in classrooms and in the broader school community. In many cases, through gatekeeping, students with disability are channelled into special/segregated schools and classes. Schools fail to engage students with disability and their parents in decision making.

International policy

They use and misuse exclusionary discipline on students, and fail to plan and support students’ transition to further learning and work.

A safe, quality and inclusive education can only be delivered through significant transformation of the school system. In Part A, ‘Inclusive Education’ we recommend legislative and policy changes, improved procedures and support services, and changes to culture, capability and practice ‘on the ground’. We recommend that these changes are embedded in school practices through enhanced workforce training and support, improved data collection and use, stronger oversight, and greater accountability. Reform at the scale we are proposing requires careful prioritisation and a coordinated approach.

All Commissioners agree that mainstream schools need major reforms to overcome the barriers to safe, equal and inclusive education. However, Commissioners have different views on whether inclusive education is consistent with maintaining systems of special/segregated education settings, separate from mainstream schools. The Commissioners explain their differing views”.

The Commission, made up of six Commissioners, had been fought for by the Australian Disabled People’s Movement over a number of years. On education, despite all agreeing with implementation of Article 24 of the UNCRPD and General Comment No 4, which advocates for a mainstream inclusive mainstream system where all attend and have their needs met, the Commission was split as follows:

• The Chair, (Sackville) and Commissioners Mason and Ryan consider the policy choice is not a simple choice between (a) a non mainstream school whose students are completely isolated from their peers and (b) a fully inclusive school system in which all students, regardless of the nature of their

International policy

impairment or the complexity of their support needs, are educated together at all times. They consider that educational authorities should ensure students with complex support needs engage regularly with their peers in mainstream schools in a variety of contexts. They also consider this to be consistent with the goal of a more inclusive society.

• Three Commissioners, Bennett, Galbally and McEwin, consider that to achieve inclusive education, all special or segregated education settings must be closed over a period of 28 years (beginning in 2024). They consider the segregation of people with disability, including in education, to be a significant human rights issue linked with violence against, and the abuse, neglect and exploitation of, Disabled people.

It is important to note that Bennett, Galbally and McEwin are Disabled people. Sackville, the Chair, for many years has operated under a medical model approach. Mason, who represents Indigenous people, and Ryan, a teacher for 40 years, should have known better. As the Chair had 2 votes the full inclusion view was described as a minority report.

Nicole Lee, the president of advocacy organisation People with Disability Australia, was quoted in The Guardian as saying the ‘council being set up by the federal government’ should include Disabled people: “We don’t want to advise into any reporting mechanisms or any councils or any oversight bodies that have been developed moving forward. We want to be in the room alongside government, with the bureaucrats, making the decisions for our lives – that impact our lives. By us, for us.”

She also stated that receiving the report was a matter of “pride, but also grief” for people in the disability community:

“I don’t think any of us in this room today are surprised by the gravity of the stories that are contained within that report. We know what our lives have been like, we know the violence that we’ve been subjected to. We also want to see a future that is fully inclusive – not more inclusive, we want a fully inclusive future and completely desegregated environment and community.” Ireland moves to progressive realisation of inclusive education

In Ireland, the National Council for Special Education (NCSE) has launched a “landmark” policy advice paper recommending an inclusive education system which would see all schools catering to all students. The advice paper, ‘An Inclusive Education for An Inclusive Society’ holds out the promise of a truly inclusive Ireland and would see schools resourced and equipped to educate all children in their local community, including children with special educational needs.

The paper’s recommendations represent a substantial systemic reform for Irish education which will impact curriculum, school buildings and facilities, as well as professional standards for teachers. There are now almost 3,000 special classes attached to mainstream schools across the country providing for over 18,500 children, while the number of special schools will increase to 134 in September, providing for 9,000 students. The resourced classes have been prompted by a huge rise in the number of students with neurodiversity.

The advisory paper proposes that children labelled with special educational needs be educated in their local schools “rather than having to travel long distances to access a special class or special school”. The NCSE believes this would also help to create a greater understanding and respect for those who experience exclusion and discrimination within the education system.

The paper also recommends establishing a strategic planning group to oversee the development, as “bringing about an inclusive education system in Ireland will not be a straightforward or short-term process”. “It was clear” from consultations that shortcomings relating to therapy services and behavioural support for students with special educational needs prevail, and these services and supports should be expanded and rolled out to all schools.

This recommendation will require the employment of a significant number of speech and language therapists, occupational therapists, behaviour practitioners, and NEPS psychologists over time.

Teacher professional learning

The advisory paper further recommends the enhancement of teacher knowledge, skills, and competencies to support the education of students with special educational needs through career-long professional learning. This would involve a detailed audit and review of established learning programmes, including special and inclusive education modules in undergraduate and postgraduate courses.

The NCSE states that the Teaching Council should set out standards for the knowledge, skills, and competencies required by all teachers, so they can provide education appropriate to all students. Although special schools and special classes will continue to be part of the provision for students with special educational needs, schools will require support to ensure that students are appropriately placed and that such places are based on student need.

The NCSE also said student placements should be reviewed annually, as concern was expressed that once a student is placed in a special school or special class, only on very rare occasions does this student transfer to mainstream education.

Furthermore, it was noted that many school buildings were old and despite some adaptations having been made, accommodating Disabled students with access needs remained an issue due to some buildings being inaccessible.

NCSE Chief Executive John Kearney acknowledged there will be “significant challenges in achieving the ambitious goals of this policy advice”.

The Directorate-General for Structural Reform Support (DG Reform) Office has appointed the European Agency for Special Needs and Inclusive Education to provide support to Ireland to progress the development, which will take account of the NCSE’s findings and recommendations. The European Agency vision for an inclusive education system is one in which “all learners of any age are provided with meaningful, high-quality educational opportunities in their local community, alongside their friends and peers”

Education Minister, Norma Foley, welcomed the report. However, they believe that special schools will continue to play a vital role in meeting the needs of children with the most complex educational needs well into the future.

In summary, Education Minister, Norma Foley, stated emphasis lies on promoting dual education system rather than attempting to phase out segregated provisions: “To the greatest extent possible, we want children, whatever their ability, to have the opportunity to learn in their local school with their siblings and peers, be it in a mainstream class or a special class.” (The Irish Examiner, 16th January 2024).

How

might Education, Health and Care plans (EHCPs) be improved?

By Sharon Smith, Parent and PhD Researcher, and Michelle Daley, ALLFIE Director

The national SEND Change Programme has begun with the intention of making improvements to the SEND system. Over the past 40 years (since the implementation of the 1981 Education Act), there have been so many attempts to deliver on SEND legislation. There have been a myriad of reports, inquiries, green papers and new codes of practice and yet it is clear that the SEND system remains in deep trouble.

In fact, things have gone backwards with more and more Disabled children and Young people being turned away from mainstream schools and colleges even when it is their right to be there. For us it is completely mystifying why the system is so problematic for the Government and local authorities to get right. The system should be delivering a service that intersects with the other departments which enables children and Young people to have a good education, having a happy childhood and fulfilled adult lives.

Image: Left, Michelle Daley, right, Sharon Smith

The SEND Change Programme is about a few local authorities in each of the nine English regions trying out some new ideas. One of these ideas is to have a standard national Education, Health and Care plan (EHCP) template. This means that every local authority in England would use the same template, leading to more consistency across the country. This is being seen as one of only a few possible positives that have been presented within the SEND & AP Improvement Plan. However, its success will depend on the full and meaningful involvement of children, Young people, and their parents in collaboration at all levels of testing, implementation and ongoing evaluation. Also, there needs to be sufficient flexibility within the template to allow for a wide and varied range of needs and desired outcomes. The template should not lead to homogenous EHCPs.

The introduction of a national template presents the SEND system with a big opportunity to think again about the purpose of an Education, Health and Care plan and how it can enable children and Young people to have the support they need to have the best life possible, whatever their socio-economic background. For this to happen and be meaningful, they need to be included in their communities and in society with access to the same things as others. Disabled children and Young people have consistently said that they want the same opportunities as everyone else and to not face prejudice and discrimination. Their parents have said they would like to achieve this for their children without the continual fight and conflict.

The 2015 SEND Code of Practice already sets out clearly what should be in a plan. The plan must be clear, accessible, jargon-free and understandable to the child, parents and all professionals who will work with them. The plan must also include outcomes that will take the child towards their (and their parents) aspirations for the future. However, EHCPs are often long, detailed and full of inaccessible language, lifted from professional reports, which many children and Young people –especially those with learning disabilities/ difficulties – may well fail to understand. The detail and specific wording within the EHCP is often subject to lengthy negotiation between local authority SEN teams who will only want to make changes if a professional report states it is necessary. This disregards parents/carers who are wanting to ensure that their child or Young person has a meaningful education and is able to be supported as they approach adulthood to make their own choices about their future.

We hope that, as the regional Change Programme Partnerships (the local authorities that will be testing the new ideas) test the new template, they will think hard about how to achieve plans that are truly understood and owned by Young people and their families. This is necessary to ensure that the EHCP becomes a helpful document which sets out how the partnership between school (or nursery or college), child/Young person, family and other services (such as health, social care, employment, housing and the local community) will work together. This in turn will ensure the child/Young person enjoys school, has friends

Policy

and a social life and moves into adulthood with a job and all the information they and their family need to live an ordinary life, included in their local community with the support they need.

For this to happen, the plan needs to be developed by the child/Young person, their family and the people around them who know them best. It is often a good idea for friends and siblings to be involved too. The conversation needs to be person-centred and would think about the following:

• What is great about this child/Young person from the perspectives of the people who love, know and care about the child/Young person?

• Who are the important people in the child Young person’s life?

• What is important for this child/Young person? (now and in the future)

• What is working well and should remain in place?

• What is not working so well and needs to change?

This approach leads to a fruitful discussion about outcomes. What we are trying to achieve are outcomes that build on what is working, that reduce or eliminate the things that are not working, and that take the Young person towards their personal aspirations. For example, some children and Young people do not have friends but really want friends, so we would then look at what we know works to support friendships and set outcomes to be achieved over the next year or key stage. This could be setting up a circle of friends at school, using a Personal Budget within an EHCP to support friendships out of

school or identifying things that are already out there in the community that the child/Young person could join in with, with the right support.

As Young people begin their journey into adulthood, the Code of Practice sets out clearly that from school year nine, when children become aged 14, planning must be focused on preparing for adulthood. The Code says: “8.9 Local authorities must ensure that the EHC plan review at Year 9, and every review thereafter, includes a focus on preparing for adulthood.”

Transition planning must be built into the revised EHC plan and should result in clear outcomes being agreed that are ambitious and stretching and which will prepare Young people for adulthood:

• There must be a focus on Preparing for Adulthood

• The discussions must centre on the Young person

• The Young person’s aspirations and what they want to achieve must be explored

• Outcomes should be ambitious and show how they will enable Young people to make progress towards their aspirations

This all means that all EHCPs must include outcomes around employment, independence (having a meaningful voice), friends, relationships and community participation and health. And yet, so many parents and Young people report that these things are not discussed at all at school or at annual reviews.

One of the problems is that plans are so often requested as a way of getting additional

resources or as a way of changing a school placement, often due to mainstream schools stating that they cannot ‘meet need’. They have become a bureaucratic nightmare – not being produced on time, full of jargon, not person-centred, not including Young people’s voice and not being reviewed and updated properly every year.

All of this, instead of being a positive plan to support a child or Young person to have a great life. Too many plans include endless stuff that should be ordinarily available in schools and an integral part of teachers’ standards. This lengthens the EHC Plan document to such an extent that it becomes unlikely anybody will ever sit down to read it.

Young person's voice

Outcomes are often not SMART (Specific, Measurable, Achievable, Realistic, Time-bound), and not focused on taking the child/Young person towards their aspirations but rather things that should really be part of day-to-day classroom practice. Outcomes in plans should be holistic and about the whole of life.

We sincerely hope that the Change Programme testing leads to a brilliant national template that is not ‘one size fits all’. That it is genuinely based on the beautiful uniqueness of the child/Young person, is truly person-centred and supports their full inclusion in mainstream educational setting and support to live the life they want for themselves now and in the future.

Report on being a Disabled Youth delegate to Commonwealth Youth Ministers Meeting

Saista Parwin, from India, had the opportunity as the representative of Commonwealth Disabled People’s Forum (CDPF) to be the Youth representative at the 13th Commonwealth Youth Ministers Meeting in London, September 2023. She reports back to Inclusion Now.

It was a privilege, to attend the Commonwealth Youth Ministers Meeting held in London but a disappointment realising that 1.3 billion of the worldwide population is a Disabled person and I am the one and only representative who attended the meeting from my country that is a Disabled person (pun intended). I felt every Disabled person present probably felt some kind of desire to take action – it really was a call to action.

Historically, the fight for the rights of Disabled people has taken various forms, ranging from peaceful resistance to protest, and coalesced around leaders whose words and deeds provide a call to activism. Different movements have resonated across Commonwealth countries and globally, particularly among activists from the Commonwealth countries, who leverage the power of social media and our interconnected lives to raise awareness of our campaigns.

Young person's voice

These campaigns address a range of issues, from accessibility to reasonable accommodations, from the fight for mainstream coverage to basic access to facilitates such as washrooms in the conferences etc - all basic human rights that demand attention.

Unfortunately, the Commonwealth Secretary General did not adopt this inclusive approach, which reflects the harsh reality we are all living in. There is a notable decline in Disability Rights campaigns, with disability activists often being overshadowed by political and geopolitical considerations. Furthermore, historical, cultural, and geographical factors are sometimes used to silence calls for protecting the rights of Disabled people who are most marginalised.

Saista's event diary

Tactics such as ‘Whataboutism’ and comparisons to similar or worse oppression are employed, whether out of genuine ignorance or as a calculated move, to suggest that calls for equal representation of Disabled people’s human rights are unnecessary or unjustified.

Over five impactful days, the conference hosted a series of engaging plenary sessions, each contributing a unique perspective to the exploration of varied human rights issues in the Commonwealth and the state party.

• Also find the declaration Report on 10th Commonwealth Youth Ministers Meeting, Marlborough House | London, United Kingdom 11-15 September 2023

⊲ Monday, 11 September 2023: Roundtable meeting (with Stakeholders)

Foreign Minister Jalil Abbas Jilani chaired the 10th Commonwealth Youth Ministers’ Meeting (CYMM) in London from 12-15 September 2023. This was the first time in 30 years that Pakistan chaired a Commonwealth event. Youth Ministers from more than 45 Commonwealth states participated in the meeting, which was held as part of the Commonwealth’s commemoration of 2023 as the “Year of Youth.” Chairing the CYMM, the Foreign Minister emphasised the Commonwealth’s role in charting youth engagement in the global sustainable development agenda. He added that youth comprised 60 percent of the Commonwealth’s population, which was our biggest asset.

I had three interventions:

1. When we are talking about inclusivity and reasonable accommodation, where is the sign language interpreter? Are we just talking about inclusivity, but when it comes to actual implementation, I see little action in the ground realities?

2. When we talk about education, what steps has a responsible International Organisation taken to ensure inclusive education for all, especially for Disabled children with special educational needs coming from the economically marginalised sections of the society?

3. I hear the word ‘inclusion’ from every other esteemed speaker, which is good and I am happy about it. But wait, let me ask you something. I will be very obliged if you could answer: When we are talking about inclusion repeatedly, almost from every other speaker/panellist, but we are sitting

Young person's voice

in one of the Western countries known to be a developed nation, in the very building where we are sitting; that building itself is not wheelchair accessible, and the washrooms are not friendly enough if my colleague wishes to attend this whole session.

⊲ Tuesday, 12 September 2023: Ministerial Policy Discussion on Sub-theme 2: Education

Same questions on inclusion and education to the minister of Ghana and to the ministers of Kenya:

1. What steps have they have taken in their respective government to ensure that Disabled children have access to primary education?

2. How to ensure primary education, serves as a basic foundation and steppingstone, to empower Disabled people economically? Because recognising the correlation between education and economics is imperative to leverage education as the tool to bring and include Disabled people into the mainstream society.

3. I received a few cross questions during the discussion and a few afterwards when networking.

⊲ Wednesday, 13 September 2023: Ministerial Policy Discussion on Sub-theme 4

My intervention and questions to the panel:

1. Diversity is an important issue for any modern state/business, but it’s not enough to simply hire people of different nationalities, races, genders, and sexual orientations or categorise Disabled persons, whatever you want to name us although we prefer the word Disabled people. Everyone needs to feel welcomed, safe and free to be themselves in the workplace. If you focus on diversity, equity and inclusion (DEI) in your state, your business’s culture and bottom line will benefit.

2. Although many states are moving toward more inclusion and diversity, isn’t there still much progress to be made?

3. As a State what steps have you taken to ensure that diversity is maintained?

Business – the breakout session

Questions to Pakistan's ex-Sports and Youth Minister:

1. Under which policy or law is there no representation politically, especially from the most vulnerable and marginalised community: that is Disabled persons since independence of Pakistan in 1947

2. Why is there no law explicitly for the persons with disability or per se reservation for the Disabled youth?

3. When you are talking so much about youth concerns and when the state is so powerful, what is stopping you from doing so? Why is there a lack of political will? I appreciate your interest. I as youth representativemyself was impressed but when it come to a Disabled youth why is there a big silence?

⊲ Thursday, 14 September 2023

The rest of the time on Thursday I spent networking and meeting with the Commonwealth Human Rights Unit. Overall, I was not impressed and realised how far we have to go to get disability equality in the Commonwealth, but this only increased my motivation to achieve this.

Chasing My Childhood Dream: Shedding Light on the Barriers in the Ugandan Education System

Image: Kihembo Wilbert, Author

By Kihembo Wilbert, Commonwealth Disabled People’s Forum (CDPF) Youth Representative and Executive Director of the Voice of the Youth with Disabilities (VYD) organization, Uganda

"My journey through education as a person living with Cerebral Palsy has been a testament to resilience, determination, and the transformative power of inclusive education. Sharing my story sheds light on the barriers faced by Disabled people within the Ugandan education system."

Technology for Inclusive Education

From a young age, I harboured a burning desire for knowledge and the dream of earning a PhD. At the tender age of five, I expressed my longing for education, and my parents recognised its profound significance in my life. With unwavering dedication, they enrolled me in a private school believing that it would provide an inclusive environment that would nurture my growth and foster a sense of belonging. Throughout my primary education, I encountered numerous barriers as a Disabled student. For instance, the act of writing with a pen proved to be a significant challenge, often leaving my teachers struggling to decipher my handwriting. However, my educational journey took a remarkable turn when I recieved a laptop.

This technological marvel transformed my academic pursuits, enabling me to write legibly and comfortably. With this invaluable tool, I excelled in my final national examinations, attaining a distinction with a first-grade distinction.

Embarking on my secondary education in 2014, I continued to rely on technology as my steadfast ally. Utilising a laptop for studying and completing exams not only boosted my academic performance but also empowered me to actively engage in classroom discussions, collaborate with classmates, and explore an extensive array of educational resources online. Technology became the catalyst that enabled me to make remarkable strides in my education and improved my experience.

Embracing Online Learning

The pursuit of my childhood dream to obtain a bachelor's degree faced a significant setback when I did not achieve the required grades for direct enrolment. Undeterred, I enrolled in a computer science diploma program at the International University of East Africa. The unforeseen arrival of the COVID-19 pandemic necessitated a shift to online learning, which proved to be a blessing in disguise. Embracing the virtual classroom, I seized the opportunity to acquire knowledge and hone my skills from the comfort of my own home, determined to navigate any obstacle and not let them hinder my educational journey.

However, the path to my bachelor's degree encountered further challenges. The university I initially chose discontinued its online system, making on-campus attendance compulsory. This presented insurmountable barriers related to accessibility, transportation, and financial constraints. Faced with the heart-wrenching decision, I had to discontinue my studies at that institution, putting my childhood dream temporarily on hold.

Yet, my unyielding determination refused to be defeated. A glimmer of hope emerged in the form of Cavendish University, which offered an online system for pursuing a bachelor's degree in Information Technology. This lifeline allowed me to continue my studies without the limitations of physical attendance.

Addressing the Educational Barriers

It is crucial to acknowledge the different barriers posed by the Ugandan education system for Disabled students. Limited accessibility, inadequate resources, and a lack of inclusive pedagogy hinder their educational progress, perpetuating exclusion and limiting opportunities.

The absence of inclusive infrastructure and facilities in many Ugandan schools creates a daunting environment for Disabled students. Scarce funding and a lack of assistive devices, such as wheelchairs, hearing aids, and braille materials, further exacerbate the difficulties they face. The educational curriculum often fails to address Disabled people's unique needs and learning styles, hindering their academic potential and personal growth.

Moreover, the deeply entrenched stigma and discrimination against Disabled people within the Ugandan society can cause profound emotional pain. Negative attitudes and a lack of understanding from teachers, peers, and society at large can isolate and undermine their self-worth. Insufficient awareness and training among educators in inclusive pedagogy only perpetuate missed opportunities and untapped potential for Disabled students.

One significant aspect of fostering disability inclusion is providing Disability Equality Training to business leaders and public service professionals. We need to educate doctors, nurses, civil servants, social workers, teachers, and lecturers about the shift from a medical to a social human rights approach to disability equality. By raising awareness and promoting disability equality, we can challenge stereotypes and prejudices that exist within our communities and institutions.

Youth Leadership and Digital Inclusion in Rural Uganda

In many rural areas, such as my hometown of Kasese, the situation is even direr. The isolation and depression faced by Disabled youth due to the lack of understanding and support are alarming. It is time for change. Organisations fighting for disability rights must ensure that the voices of Disabled youth are heard.

International

Disabled youth leaders should be trained, empowered, and given the opportunity to take the lead.

Commonwealth Disabled Peoples Forum has been organising Youth Leadership Training since 2021, and this year’s training will commence in September. While the current format is online, it is essential to make it more impactful and effective for Disabled youth in rural areas with limited or no internet access. In-person training can bridge the digital divide and reach those who need it the most.

Digital inclusion is another area that must be prioritised. Digital inclusion enables Disabled people to lead more independent lives and help to reduce social isolation. We must develop strategies to promote digital inclusion for Disabled people. This includes making websites and digital services accessible, providing training and assistance, and ensuring that all digital communications across the Commonwealth and within governments are accessible. Additionally, increasing the free access points to the internet will help bridge the digital divide.

I have utilised my digital skills to establish an online radio station called Snow FM, which advocates for disability rights. It serves as a platform to amplify the voices of Disabled people and promote inclusivity. These initiatives demonstrate the immense potential that digital skills hold for Disabled youth.

A Call for Inclusive Education and Building an Inclusive Society in Uganda

I continue to remain resolute in my pursuit of education and my childhood dream of earning a PhD. My journey is not only a testament to my personal resiliance but also a call to action for the Ugandan education system. It is essential to invest in inclusive infrastructure, provide specialised resources and support services, and prioritise comprehensive teacher training in inclusive pedagogy. By fostering an educational environment that embraces diversity and accommodates diverse learning styles and needs, we can empower Disabled pople and create a more inclusive and compassionate society.

More from Kihembo:

• United Nations Conference of State Parties speech, June 2023

• Commonwealth Youth Ministers Meeting speech, September 2023

• Commonwealth Year of Youth Manifesto

Image: Kihembo Wilbert and colleague

Disability history

Origins of 1970 (Handicapped Children) Education Act

By Richard Rieser, World of Inclusion

Eugenicist thinking, driven more by social prejudice than genuine scientific understanding, played a large part in categorisation of certain children labelled as ineducable. Initially categorised as ‘feeble minded’ along with ‘imbeciles and idiots’ under the Mental Deficiency Act of 1913, this latter group became reclassified as ‘educationally subnormal severe’ in the 1944 Education Act:

“If, after considering the advice given with respect to any child by a medical officer in consequence of any such medical examination as aforesaid and any reports or information which the local education authority are able to obtain from teachers or other persons with respect to the ability and aptitude of the child, the authority decide that the child is suffering from a disability of mind of such a nature or to such an extent as to make him incapable of receiving education at school, it shall be the duty of the authority to issue to the local authority for the purposes of the [3 & 4 Geo. 5. c. 28.] Mental Deficiency Act, 1913, a report that the child has been found incapable of receiving education at school (including a special school)." (Para 57.3 1944 Education Act)

This led to around 50,000 children, deemed ineducable in England, being placed in Junior Training establishments, which may have been better than being in mental deficiency hospitals where many remained, but they were still denied education.

How had this blatant denial of personhood and rights come about?

Eugenicist campaigners for ‘Mental Deficiency Legislation’ which included many scientists, medical doctors and psychologists at the end of the 19th Century and first half of the 20th Century believed that people with learning disabilities were a threat to the population for several reasons:

• They were seen as ineducable, with the introduction of compulsory state education (from around the 1870s) and the requirement from capitalism for a literate and numerate workforce.

• They apparently lacked ‘common sense’, which limited their usefulness in maintaining Empire and competitive complex societies.

• Intelligence was thought to be contained in one gene, such as hair and eye colour, and so those carrying the weak gene of mental deficiency would, if allowed to procreate, weaken the gene pool and so limit the success of the country.

• Mental capacity was believed to be fixed and could not be enhanced very much by education and so could only be eradicated by the setting up of separate sex segregated colonies /hospitals; sterilisation; or as eventually under the Nazis in Germany - extermination.

• Once ‘mental deficiency’ was identified by a number of culturally biased and subjectively applied tests from a burgeoning science, other categories were added such as ‘the morally defective’

• Vagrants, long term unemployed, those living in poverty, the sexually promiscuous, criminals, petty thieves, prostitutes and immigrants were all gathered up and classified under mental deficiency legislation.

These were the social and moral prejudices and beliefs which largely reflected the morality and social position of the elite in society, not scientifically proven. But many scientists feeling sure such differences existed and were provable set about trying to prove these assertions. Rather than setting out to prove what they thought was wrong by rigorous methods, they did the opposite. They made a number of fundamental errors because they wanted so much to prove what they thought was right.

Disability history

False Science

The Eugenicists, Scientists and Medical Doctors made several serious scientific errors:

Single trait. That people with learning disability had a trait/gene of ‘feeble mindedness’ that could be identified with intelligence testing and by their appearance. These were not simple identifiable ‘traits’ such as eye colour, height and blood group, which are easy to define and measure. Eugenicists, however, were most interested in mental capacity and behavioural traits – such as epilepsy, intelligence, depression, feeblemindedness, alcoholism, and criminality. These were not easy to identify as a genetic characteristic. Even today with our far greater understanding of genetics and the chemical messengers in the cell that make up DNA, scientists are still unable to find particular traits or genes for these human conditions.

Reductionist simplifications. They had the tendency to treat complex traits – especially behaviours – as if they were a single entity, stemming from a single cause. For example, eugenicists treated intelligence as if it were a general innate quality of the brain that could be represented by a single factor. In reality, their ideas were very vague on the subject. Later experts recognised that there may be many "intelligences" – including mechanical, quantitative, visual/spatial, verbal, and abstract and these develop in a complex ongoing interaction of the individual, their genetic potential, and the environment.

Poor survey and statistical methods. Seldom was a eugenic researcher able to personally interview family members going back more than two or three generations, in order to determine who showed the trait under study. At the time, few doctors and hospitals kept systematic medical records, so ‘pedigree information’ was often obtained by second-hand reporting or even hearsay. Interestingly, Goddard was of the strong opinion that a trained person could identify mentally deficient people on sight. This dubious method was used to select those who had the bad gene in genealogical studies and to select subjects for testing:

i. Family tree data was assembled to show the impact of so called ‘good’ and ‘bad’ traits on the social outcomes and behaviour of different individuals, whether they were alcoholics, unemployed or hard working and abstemious. These were reworked later to demonstrate numerous errors and that there was no such simple link between trait and behaviour

ii. Eugenicists also falsified evidence to prove their arguments. Statistical work on the passing on of mental deficiency from parent to child was falsified for the Royal Commission on the Feeble Minded 1904. Photos were doctored by adding lines around the eyes and mouth to demonstrate deficiency by Goddard in his highly influential Kallikas study.

iii. Yerkes managed to convince the War Department in USA in 1917 that all recruits to the army (1.75million) should receive psychological testing. When he got ambiguous data from this macro study, he overlooked all the problems to infer that the majority of recruits were mentally deficient. Re-working of this flawed data was used to show that Black recruits had a lower average score than white recruits. This set the seal on 100 years of Black history and Civil Rights discourse.

iv. Harry Laughlin of the Eugenics Record Office in the USA was so keen to prove to the Senate that immigrants from Southern and Eastern Europe had a higher level of crime and mental impairment that he falsified statistics to get legislation through. This forced them all to go through eugenicist testing on entry at Ellis Island, leading to many being sent back to Europe.

v. Cyril Burt, an educational psychologist working for the London County Council in 1930s, misinterpreted his factorial analysis of twin studies and falsified results of tests to prove his theories that children with learning difficulty should be educated in separate special schools or sent to institutions as they were ineducable. Burt’s insistence on fixed intelligence also led to the outcome of two UK Government Committees in 1930s as to the future of state education. Burt

Disability history

provided most of the empirical evidence to the 1931 Hadow Report on Primary Education and the 1938 Spens Committee on Secondary Education. This led to the 1944 Act tripartite system of Grammar, Secondary Modern and Technical secondary schools with entry based on an intelligence test (the 11 plus). Burt was exposed as a fraud by Leo Kamin in the 1970s - that a major figure in the IQ world was found to be fudging results and making up participants is of course quite telling. In the 1950s the assumption was increasingly challenged as children deemed not capable of academic education having failed their 11 plus exam gained large numbers of GCE Qualifications. Eventually a comprehensive system was established in UK and now many students with learning disabilities are achieving exam success with reasonable adjustments.

False quantification is the assumption that if you can produce a numerical value (such as a score on an intelligence test) then it must be a valid measure. For example, eugenicists argued that IQ tests were accurate and culture-free measures of native intelligence – even though they contained questions that were obviously dependent on cultural background and experience. Tests were given under a wide variety of conditions, often by poorly trained administrators and sometimes even in pantomime when the subjects spoke no English. According to one set of IQ tests given to immigrants by Henry H. Goddard, 83% of Jews, 80% of Hungarians, 79% of Italians, 87% of Russians were classified as "feebleminded." Although most of these results were later retracted, Goddard’s test had dire consequences for immigrants who were returned home and for individuals who were consigned to mental institutions, and sometimes sterilized. 60,000 American citizens were compulsorily sterilised and 37 US states had this on the statute book, as did Canada, Germany, France, Belgium, Norway, Sweden and many others. Some until 1990s and still in some countries.

Ignoring social and environmental influences. Eugenicists sought genetic explanations of complex human traits to the virtual exclusion of other explanations. However, family pedigrees are as much documents of social inheritance as they are of biological inheritance. In addition to genes, family members share customs, lifestyles, and health practices (including diet) that can greatly affect the development of physical, intellectual and emotional traits. For example, Charles Davenport explained lineages of naval officers in terms of an inherited gene for thalassophilia, or "love of the sea." He neglected the obvious explanation that seafaring fathers had a strong influence on their sons' career choices. At the same time, laboratory geneticists were beginning to recognise that most physical and physiological traits are the product of interactions between genes and the environment. For example, fruit flies of the same genotype showed different phenotypes when raised at slightly different temperatures. Environmental input was recognised as being even more influential on the development of behavioural, personality and ‘mental traits’.

Intelligence Testing. It was believed that children had ‘innate’ intelligence or not if they were mentally deficient. Tests were originally developed in France by psychologist Binet to identify those children that needed to get extra help in small classes as they had special educational needs. Under the pressure of Eugenics and the need to identify the ‘feeble minded or moron’ in society in USA they were separated from the rest of the population.

Goddard developed tests to identify children who were not developing their learning as others did. Those tested whose IQ or Intelligence Quotient was well below the average were then identified under the Mental Deficiency Act. These tests were further refined by Terman who applied them to all recruits to the US Army in 1917 and then to immigrants entering the USA through New York from Europe. These results were not questioned in the first place which showed high levels of mental deficiency amongst 1.5 million army recruits or that over 75% of immigrants from Eastern Europe had ‘mental deficiency’.

Disability history

Intelligence was innate and could not be much altered by education and training was particularly shown by psychologists such as Jack Tizard. Between 1948 and the 1960s, Tizard's work laid the foundations of community care for people with learning disabilities. Tizard was a psychologist, a socialist and pacifist from New Zealand who set out to prove that the fixed categories of Mental Deficiency were false. At the Social Psychiatry Research Unit, at the Maudsley Hospital in South London, the initial focus of the research was on the occupational skills of people with learning disabilities detained in large institutions. Jack’s challenge to this policy, with his colleague Neil O’Connor, was to demonstrate through scientifically respectable studies that many of the people detained were capable of work, in open employment or in sheltered conditions. The research began with the more able people but later progressed to the work potential of those with a more severe degree of learning disability:

“The research fed into the Royal Commission on the Law relating to Mental Illness and Mental Deficiency which reported in 1957 and led to the 1959 Mental Health Act which completely reformed the 1913 Act. A research strategy formed in Jack’s thinking that involved four elements: epidemiological surveys of the extent of particular social issues, the setting up of model services to represent a more humane approach, careful evaluation of the effects of these new services against conventional practice, and dissemination of the results to key policy actors.”

‘‘In the early 1960s, Jack negotiated funding for three major projects. One was a study of disability in a complete cohort of children aged nine to twelve on the Isle of Wight, a total of 3,500 children. This was reported in a 400-page book co-authored by Jack (Rutter, Tizard and Whitmore, 1970).’’

It took 11 years to apply the same logic to amend the 1944 Education Act in 1970, due to the efforts of progressive psychologists, parents and sympathetic politicians:

“(a) no further use shall be made of the powers conferred by section 57 of the [1944 c. 31.] Education Act 1944 (that is to say the section having effect as section 57 by virtue of the [1959 c. 72.] Mental Health Act 1959) for classifying children suffering from a disability of mind as children unsuitable for education at school; and (b) a local health authority shall not, under section 12 of the [1968 c. 46.] Health Services and Public Health Act 1968 have the power or be subject to a duty to make arrangements for training children who suffer from a disability of mind and who are for purposes of the Education Act 1944 of compulsory school age;” (Paragraph 1. Mentally Handicapped children)

Further large-scale studies and placing children with learning difficulties in group homes showed a child centred approach led to much improvement and progress. Jack and colleagues picked up early what is now well recognised that intelligence is not immutable and that the brain renews itself, is plastic and adaptable and learns in many ways.

Standardised tests are still employed in our school SATs and league tables. Governments have not recognised the truths that pioneers such as Jack Tizard found. But at least all children are now deemed educable thanks to pioneers such as Jack Tizard due to the 1970 (Handicapped Children) Education Act. After 54 years unfortunately the struggle continues to create pedagogy and school environments, where all Young people can be included and achieve for themselves.

Our 14-year-old daughter, Billie, uses a powered wheelchair and ventilator for respiratory support. We live in rural Yorkshire and, along with her two siblings, she actively participates in her local secondary school, and community activities. Billie enjoys school and has a sociable group of friends. She’s expressed a keen interest in a career within the Disabled People’s Movement as a Researcher. This passion stems from Citizenship lessons that included a visit to a Disabled People's Organisation, where the class learned about the contributions and achievements made by Disabled people in the UK.

Recently, Billie has experienced a change in healthcare needs during the school day, and her current Health Budget, as part of her Education, Health, and Care (EHC) plan, no longer meets her needs. We approached our Local Council for an increase, but they refused, asserting that Billie's needs could be met more economically within a special school setting for children with "complex medical needs." The Council has stated the decision has immediate effect and all existing support in her current school will stop. We are devastated by this decision and feel it's an injustice. Can you advise us on our rights to advocate for Billie to remain in her mainstream school, while concurrently challenging the council's refusal to increase the Health Budget?

The local authority (LA) and the responsible health body (RHB) have a duty to secure (and fund) any special educational or healthcare provision in Sections F and G (respectively) of Billie’s EHCP unless and until it is amended. In addition, the school named in Section I has a legal duty to allow Billie to attend, and there are additional legal duties on schools to support pupils with medical conditions, and make reasonable adjustments for Disabled pupils. If the LA refuses funding to allow Billie to access the educational provision she is entitled to, or the school refuses to allow Billie to attend, you should seek legal advice about a claim for judicial review and/or disability discrimination. The EHCP trumps any statement by the LA that funding will be ceased or similar.

As Billie’s healthcare needs have changed, it would be sensible to ask the school to hold an emergency review of Billie’s EHCP (if one hasn’t already taken place) to discuss the provision that she requires. Following this meeting, the LA must issue a final EHCP within 12 weeks, giving you at least 15 days to comment on a draft. Draft EHCPs do not include a placement, so you can express a preference for a different school at this point if you wish.

For children with EHCPs, there is a legal presumption in favour of mainstream education if this is what parents want. The LA must specify mainstream education in Section I of an EHCP unless a) this would be against parental wishes, or b) educating the child at school would detrimentally affect the education of other students (and there are no reasonable steps that could be taken to prevent this). Importantly, a LA cannot refuse to name a mainstream school on the basis of costs alone.

Billie’s EHCP should set out her healthcare needs which relate to her SEN in Section C. If healthcare provision does not ‘educate or train’ a child, but is reasonably required, it should be included in Section G.

The RHB must agree if healthcare provision is to be included in Section G; however, if it does, it has a legal duty to secure/pay for it. If healthcare provision is needed to educate/train, it may be deemed to be special educational provision which should be included in Section F. If healthcare provision appears in Section F, the LA must secure/pay for it. A failure by either body to secure provision in these sections could give rise to a judicial review challenge. Legal Aid may be available for these cases.

If Billie’s EHCP is amended, you should get a right of appeal to the First-Tier (SEND) Tribunal. The Tribunal does not have power to determine whether healthcare provision is included in an EHCP, unless it deems it to be educational provision. It can, however, make non-binding recommendations to the RHB. This is a longer-term solution as Tribunal appeals take time.

You may also want to consider applying for an assessment for NHS Continuing Care as this may entitle Billie to additional support, dependent upon the nature and extent of her health needs.

This legal question was posed by ALLFIE's Michelle Daley and was answered by Bethany Parr, Simpson Millar Solicitors

This magazine is published by:

The Alliance for Inclusive Education (ALLFIE)

A national campaigning organisation led by disabled people. ALLFIE works to change laws, practices and procedures which discriminate against Disabled Young people and prevent inclusion. ALLFIE works together with allies to build a social climate in which everyone has a valued place.

336 Brixton Road, London SW9 7AA

Tel: 020 7737 6030

Email: info@allfie.org.uk

Website: www.allfie.org.uk

In collaboration with:

Inclusive Solutions

A team of psychologists and associates who specialise in cutting edge practical strategies and ideas for developing effective inclusion in local mainstream schools and communities. We work with anyone who wants to bring about the real systems changes that are necessary to move towards a truly inclusive society.

World of Inclusion

Tel: 0115 9556045 or 01473 437590

Email: inclusive.solutions@me.com

Website: inclusive-solutions.com

Basement, 78 Mildmay Grove South, London N1 4PJ

Tel: 020 7359 2855 or 07715 420727

Email: rlrieser@gmail.com

Website: worldofinclusion.com

DISABLED PEOPLE, PARENTS AND ALLIES, WORKING TOGETHER to educate, facilitate and empower everyone who wants to be part of the growing inclusion movement. Together we want to bring down the barriers so all young people can learn, make friends and have a voice in ordinary school and throughout life. For each and every young person, this is an essential human right.

A consultancy that provides advice, resources and training in the UK and around the world to develop equality for disabled people especially in education. Richard Rieser is an expert disabled international equality trainer, consultant, film maker and writer and teacher. ALL