Stick men in conversation around a table.

Learning Disability, Autism and Neurodivergence Bill Consultation

April 2023. The Commissioner responded to this Scottish Government consultation.

Part 1 – Reach and definitions

We welcome the broad reach of this bill and the commitment made to the social model of disability. This aligns with the approach taken by the UN Committee on the Rights of the Child and the UN Committee on the Rights of People with Disabilities who define a disability as:

“Persons with disabilities include those who have long-term physical, mental, intellectual, or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”[1]

We are aware that there are many barriers to formal diagnosis and many children face long waits for a formal assessment and diagnosis. Children can also experience changes of diagnosis. This reinforces the approach taken by the Equality Act 2010 and the Education (Additional Support for Learnings) (Scotland) Act 2004 (as amended) and counters the persistence of the medical model, which can be a barrier to realising children’s rights.

We welcome the participative approach taken in developing this bill, but we note that the Lived Experience Advisory Panel (LEAP) does not appear to have included children or young people, nor was there any alternative engagement directly with children with learning disabilities, autism and neurodivergence. Whilst adults can discuss the experiences they had as a child and parents can discuss the experiences of their children, neither is a substitute for direct engagement with children. The right of children to (directly) participate, when decisions are made about them, at an individual, local or national level, is enshrined in Article 12 of the UNCRC and expanded upon in the UN Committee on the Rights of the Child’s General Comment 12[2]. This right cannot be realised by consulting with representatives of children, with parents or even with adults with lived experience.

For this and other questions, we would recommend that Scottish Government undertake direct engagement with children and young people who are autistic, have learning disabilities or are otherwise neurodivergent, to better understand their views.

We are also concerned that children and young people’s experiences are not considered across the whole consultation. For example, they are largely absent from consideration in the section on Health and Wellbeing (save a mention of neuro-developmental pathways) and technology. It is important that children’s experiences and human rights are considered in all areas covered by the proposed bill.

Part 2 – Overarching Themes

Section 1 – Statutory Strategies for Neurodivergence and Learning Disabilities

No position

Section 2: Mandatory Training in the Public Sector

Training and awareness raising for staff is important and we agree with LEAP that there is a need for people with lived experience to be involved in developing and delivering training, this must include children and young people.

Training needs will vary widely – depending on the sector, role and the individual’s previous experience and expertise. We caution against a proscriptive approach which results in mandatory minimum levels of training which are at a low level; insufficient to improve practice. But we support the principle that there is a need for better training across workforces which is informed by the needs and asks of children, young people and adults who are autistic, have a learning disability or are otherwise neurodivergent.

Section 3: Inclusive Communications

We welcome the proposals to make communication across the public sector more inclusive and agree that this will benefit many people beyond the scope of this consultation. We note that not enough attention has been paid to the communication needs of children who are autistic, have a learning disability or are otherwise neurodivergent. Their needs are different from those of adults but they have the same right to accessible information and communication under Articles 9 and 21 of the UNCRPD as well as Article 13 of the UNCRC.

We support the extension of inclusive communications to the complaints system. Although work is underway to develop child friendly complaints processes, a truly inclusive, human rights-based process would be accessible to children and adults who are autistic, have a learning disability or are neurodivergent. It would also meet the needs and range of other children and adults, including those who have English as an additional language, dyslexic people, and the 26% of adults in Scotland who face barriers due to low literacy skills[3].

Section 4 – Data

We have previously raised concerns about the quality of data on disabled children in Scotland, including in our recent submission to the Education Children and Young People’s Committee’s Enquiry into ASN[4]. Put simply, it is not possible to say how many children in Scotland are disabled.

Education is the universal services with which children have most regular contact, it is important that it is not seen as a separate silo from the collection of data on adults. Disaggregated data is not easily available, progress on this must be made.   

Data is collected on pupils with some specific conditions, but only where they correspond with a “reason for support” recorded in ASL data. This is an incomplete list and has not been updated for some time. Resistance to updating these categories is often based on ensuring long term comparability, however our view is that some of these categories are no longer an accurate reflection of a human rights based understanding of disability.

We have concerns about the persistence of the medical model of disability in education, combined with a failure in some instances to recognise neurodivergence as a disability. For example, in 2023, only 8.5% of children with additional support needs were received as being disabled. We do not think this statistic is credible, if the UNCRPD or Equality Act definitions of disability are being used.

We are particularly concerned about the large number of children (over 63,000 in 2023) recorded as having a “Social, Emotional or Behavioural Difficulty” (SEBD) as we suspect a large proportion will have some form of, possibly unidentified, neurodivergent condition. This group are, by a substantial margin, the most likely group of children to be excluded from school. The SEBD label is stigmatising and is a barrier to realising disabled children’s rights.

Section 5: Independent Advocacy

We would welcome increased access to independent advocacy services for disabled children and young people. As the consultation document outlines, rights to independent advocacy already exist for some children, but these are limited to particular groups of children, such as those who are engaging with the Children’s Hearing system. In the case of My Rights My Say, who provide an excellent service, advocacy is limited to a particular subset of disabled children – the right does not extend to children under 12 (even if they have capacity) or 16 and 17 year olds.

Part 3: Specific Themes

Section 1: Health and Wellbeing

This section has not considered the specific health and wellbeing needs of children who are autistic, have a learning disability or are otherwise neurodivergent. The consultation outlines a range of barriers that people who are neurodivergent or have learning disabilities face when realising their right to the highest attainable level of health. However, children face additional barriers because they are a child. The interplay of these barriers is important and needs to be better understood. It is essential that further work is undertaken to understand the experiences of autistic children and those with learning disabilities as individual users of health and wellbeing services.

Section 2: Mental Health and Capacity Law

We broadly support the recommendations of the Mental Health Law Review in this area. The interplay because of children’s developing capacities (Article 5 UNCRC and General Comment 20[5]) and the legal framework around adults with incapacity is complex, particularly since children aged 16 and 17 are treated as adults in some existing law (which is a potential incompatibility with the UNCRC).

Section 3: Social Care

We refer to our previous response to the National Care Service consultation[6] and in particular the lack of evidence regarding children’s services, with the exception of services for looked after children. We are concerned that this consultation has replicated the approach taken in that consultation and failed to properly take account of children’s needs, views and rights.

Section 4: Housing and Independent Living

We are disappointed not to see specific consideration of the needs of children in this section. In our response to the Scottish Government consultation “Enhancing the accessibility, adaptability and usability of Scotland’s homes”, we highlighted the ways in which current housing and homelessness policy fails to meet the needs of disabled children, including those with autism, a learning disability or other neurodivergent condition[7].

Section 5: Complex Care – Coming Home

No answer to this question (its an adult programme).

Section 6: Relationships

We welcome the attention paid to children and young people’s relationships in this section.

Children and young people consistently raise bullying as an issue that is important to them, both when we speak with them directly and in more formal engagement including the consultation we undertook as part of the development of our new Strategic Plan. The issue of bullying extends beyond bullying in school into bullying in the community and online bullying. We note that Respect Me’s research suggests that bullying in different locations is often linked. It is important that responses to bullying, including education about bullying, take account of the needs of children who are autistic, have a learning disability or are otherwise neurodivergent.

We share the concern that not all autistic children, children with learning disabilities and children with other neurodivergent conditions receive adequate Relationships, Sexual Health and Parenthood (RSHP) education. Article 29 of the UNCRC states that children have a right to an education which prepares “the child for responsible life in a free society”. RSHP education is an important part of this and also contributes to the child’s ability to protect themselves from “all forms of sexual exploitation and sexual abuse” (Article 34 UNCRC).

Article 18 of the UNCRC requires States Parties to “render appropriate assistance to parents … in the performance of their child-rearing responsibilities and shall ensure the development of institutions, facilities and services for the care of children”. This is reflected in Article 23 (2) which includes the following “States Parties shall render appropriate assistance to persons with disabilities in the performance of their child-rearing responsibilities.” In addition, Article 27 of the UNCRC and Article 28 of the UNCRPD place a duty on states to ensure access to an adequate standard of living to children and disabled people respectively. We support the LEAP’s position that there is a need for more support for neurodivergent parents.

Section 7: Access to Technology

It is disappointing that there is no mention of the impact of digital exclusion on children and young people. Although there is mention in the education section, the impacts of digital exclusion extend beyond education for children and young people with learning disabilities.

Section 8: Employment

No answer – covered in transition section.

Section 9: Social Security

We note the comments in this section on devolution of disability benefits, which we welcomed. We particularly welcome the extension of Child Disability Benefit to 18 years old.

Section 10: Justice

We welcome the clear inclusion of children and young people and of the youth justice system in this section. Disabled children and young people, particularly those who are neurodivergent, have a learning disability and/or have a communication disability are significantly over-represented in both secure and residential care homes.

We have undertaken a large amount of work on youth justice over the last 10 years, including work on raising the age of criminal responsibility[8] and most recently the Children (Care and Justice) (Scotland) Bill[9].

Section 11: Restraint and Seclusion

In 2018, our office published an investigation into the use of restraint and seclusion in schools[10]. Our investigation focussed on the use of restraint and seclusion in education, but we continue to have concerns about the use of restraint and seclusion across all settings.

In 2023, the UN Committee on the Rights of the Child called on the government to:

To take legislative measures to explicitly prohibit, without exception, the use of: (i) harmful devices, including spit hoods, plastic bullets and taser guns, attenuating energy projectiles and other electrical discharge weapons, against children; (ii) strip searches on children; and (iii) solitary confinement, isolation, seclusion and restraint as disciplinary measures in schools and alternative care and health-care settings;

To develop statutory guidance on the use of restraint on children to ensure that it is used only as a measure of last resort and exclusively to prevent harm to the child or others and monitor its implementation;

Restraint and other restricted practices can constitute cruel or inhuman treatment and therefore breach children’s rights under Article 3 of the ECHR and Articles 36 and 37 of the UNCRC. Our view is that given the risk of such a grave interference with children’s human rights, there is an urgent need for national human rights based legislative standards, guidance, and monitoring of restrictive practices across all settings. 

Section 12: Transport

No comment.

Section 13: Education

We have recently conducted a wide ranging programme of engagement with children and young people across Scotland, as part of the development of our Strategic Plan[11]. They consistently raised education as one of their top priorities and in particular recognised the difficulties disabled children and those with other support needs face to get the support they need. This will continue to be a priority area of work for our office.

We have provided both written[12] and oral[13] evidence to the Education, Children and Young People Committee, which outlines our position on this issue. We would particularly highlight our concerns about the absence of an effective right to remedy for disabled children who do not meet the criteria for a Co-ordinated Support Plan (CSP) and our concerns about the gaps in advocacy support, which is limited to children aged 12-15 who either meet the criteria for a CSP or making a reference to the tribunal on the basis of disability discrimination.

Section 14: Children and Young People – Transitions to Adulthood.

We welcome the inclusion of this section in the consultation, however our concerns around transition planning, both in education and social services, extends to all disabled children as well as to those with other support needs. It also extends beyond the transition to adulthood.

Transitions to nursery, to primary school and particularly from primary school to secondary school are also important. We are concerned that many children have poor experiences of these transitions, often with long term or even lifelong negative impacts on them.

We welcomed the opportunity that the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill provided to discuss these issues and draw attention to our response to that consultation[14].  

Our view is that a wider consideration of this issue is necessary, at a minimum including all disabled children as they transition to adulthood, but preferably also addressing other transitions in children’s lives.

Part 4: Accountability.

We have recently provided the Finance and Public Administration Committee with our views on Scotland’s Commissioner Landscape.[15]

In our response, we highlighted our concern that whilst the creation of a new, issue-based Commissioner could be seen as progress there are also significant risks. We are supportive of more resources being made available for the benefit of people who are autistic, have learning disabilities or are otherwise neurodivergent. There are many ways in which their needs could be better championed with decision-makers that would not require the establishment of a new independent officeholder supported by the Scottish Parliament Corporate Body.

The remit of this new Commissioner (if established as an independent officeholder) has the potential to include overlapping functions with the office of the Children and Young People’s Commissioner Scotland, leading to duplication of work, and exacerbating an already complicated and fragmented landscape which is hard for both rights holders and duty bearers to navigate. There are also significant financial implications for both new and existing Commission(er)s. The resources of existing offices will come under further pressure. New offices may be set up from the outset with too little resource to meet public expectations or fulfil their remit.

To illustrate the potential unintended consequences of duplication and overlap, we highlight the potential impact on our investigation powers. These are strong, but they specifically exclude situations where we would duplicate the investigatory function of another body in Scotland. As an example, this already limited the scope of our investigation into restraint and seclusion.

We intend, under our Strategic Plan 2024-28[16], to have a priority focus on education – as directed by children and young people, following extensive consultation. Within this, we will be looking at the experiences of disabled children and children whose support needs are not being met. Remits for new independent officeholders (and the allocation of resources) should ensure they will not restrict our ability to undertake work, or there is a significant risk of undermining the ability of existing officeholders to fulfil their commitments.

Children’s human rights are indivisible and interdependent. An intersectional approach to upholding children’s rights which takes account of all relevant identities enables more effective rights protection, rather than a system which separates the different issues. Where bodies with restricted mandates are created, there will be a lack of power (or specialist knowledge) to address issues with intersectional understanding. Subdividing a person’s characteristics across the mandates of numerous new public bodies will require bodies, rights holders and duty bearers to work together in ways which may not be effective or efficient. Existing bodies are unlikely to receive any additional resources to enable them to work in this way.

In addition, we highlight the status of our office as a recognised Independent Children’s Rights Institution (ICRI) within the international human rights community. It is important to recognise the distinction between bodies such as ours which hold and exercise a human rights remit, operating in line with international principles and within a transnational human rights framework, and those exercising a policy function.

[1] UN, United Nations Convention on the Rights of the People with Disabilities.

[2] UN Committee on the Rights of the Child. General Comment No. 12 (2009) The right of the child to be heard.

[3] National Literacy Trust. Adult Literacy.

[4] CYPCS, 2023. Additional Support for Learning in Scotland.

[5] UN Committee on the Rights of the Child. General Comment No. 20 (2016) on the implementation of the rights of the child during adolescence.

[6] CYPCS. 2021. National Care Service Consultation Response.

[7] CYPCS. 2023. Enhancing the accessibility, adaptability and usability of Scotland’s homes.

[8] CYPCS. Raising the Age of Criminal Responsibility.

[9] CYPCS. Children (Care and Justice) (Scotland) Bill.

[10] CYPCS, 2018. Investigation: Restraint and seclusion.

[11] CYPCS, 2024. Strategic Plan.

[12] CYPCS, 2023. ASN Inquiry Response.

[13] Scottish Parliament, 2024.

[14] CYPCS, 2019. Consultation response: Proposed Disabled Children and Young People (Transitions) (Scotland) Bill.

[15] CYPCS, 2023. Scotland’s Commissioner Landscape: a strategic approach.

[16] CYPCS, 2024. Our Plan 2024-28

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