Is your child being included?

‘Diversity is being invited to the party; inclusion is being asked to dance’-Verna Myers. Inclusion is having a voice, a sense of belonging. The 14^th World Autism Awareness Day is on 2^nd April 2021. In 2007, the United Nations and its member states adopted 2^nd April to improve Autism and Autism Spectrum Disorders awareness. And the theme for this year is ‘Inclusion in the Workplace’. Since I am a paediatrician and deal with children under 18 years of age, I have written this article to celebrate World Autism Awareness Day, emphasising ‘Inclusion in Education and School’. This article is relevant to any parent or carer of a child with any disability or special needs, not just ASD.

As you will find out in this article, inclusion is not just about being politically correct, as inclusion is crucial for peace, prosperity, creativity, success, and progress, both in school and in the workplace. Inclusion can be a source of strength, and genuine strength lies in differences and not in similarities.

Exclusion & segregation was ubiquitous!

• Segregation and exclusion of children with physical or mental needs were usual until 1981
• People with disability were excluded from family to be ‘institutionalised.’
• The building regulations, the planners and the architects created buildings without any awareness of disability. Consequently, people with disabilities struggled and had to live separate lives
• All the mainstream services such as transport, education, healthcare, entertainment venues and sports facilities were created with the assumption that people with disability would not need them
• Children with disabilities had to attend residential or day-care school provisions that involved hours of travelling or were not in their neighbourhood, leading to exclusion from social relationships and peer relationships
• People with learning difficulties were excluded from employment because of discrimination, lack of understanding, or expectation. This led to a high rate of unemployment, poverty, and reduced life opportunities

Did you know?

• Until 1870, most children received little formal education
• The 1899 ‘Elementary Education and Epileptic Children Act’ mandated the provision of separate special schools for ‘mentally and physically defective and epileptic children.’
• In fact, the 1921 Education Act instructed ‘handicapped’ children to be educated only in special schools or classes
• It was the Warnock Report and the 1981 Education Act that directed integration of disabled children into mainstream schools
• The 1981 Education Act first introduced the concept of ‘Special Educational Needs.’
• Until then, ‘impairment-based’ labelling where a child’s ‘impairment’ was the focus of attention and led to exclusion from the mainstream
• The current SEND Code of Practice 0-25 lists the duties of local authorities, health bodies, schools, and colleges to provide for those with special educational needs under the Children and Families Act 2014
• We have come a long way since, but there is some more way to go

The UN Convention on the Rights of Persons with Disabilities:

• Reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms
• Discourages viewing persons with disabilities as “objects” needing social protection
• Encourages to consider persons with disabilities as “subjects” with rights, who can make decisions for their lives based on their free and informed consent
• Reiterates that no one should be excluded and
• Reasserts that every child has a right to inclusive education, including children with disabilities

What is inclusive education?

• This means that teaching, the curriculum, the culture, the school buildings, classrooms, play areas, transport, toilets, facilities, and policies are appropriate for all children, including children with disabilities
• Inclusive education requires:
  • Removing all forms of discrimination that prevent children with disabilities to access learning
  • Providing practical support and accommodations for students to enable learning
  • The right of the child to be heard
  • Acting in the best interests of the child
  • Opportunity for life in the community
  • Support with mobility and access arrangements
  • Access to healthcare
  • Access to habilitation and rehabilitation services, such as braille, sign language
• Inclusive education promotes:
  • Participation in public life
  • Work and employment opportunities
  • Adequate standard of living

What are the advantages of ‘inclusive’ education?

• Improves learning for all children, i.e., those with and without disabilities
• Promotes understanding and reduces prejudice
• Boost respect for all people and acceptance of diversity
• A better appreciation of individual differences
• Strengthens social integration and helps break barriers
• Ensures that children with disability are equipped to work and contribute economically to their country and community
• Provides ‘real-world’ experience for all
• Exposes to academic and extracurricular activities that help students to become well-rounded
• Helps forge connections with pupils from a wide range of abilities and backgrounds
• Increased opportunities for friendships, social relationships, and interactions
• Provides greater access to the general curriculum
• Provides peer role models for academic and social skills
• Enhances inclusion in future environments and workplaces
• Improves parent participation in a child’s learning and school activities
• It would help families get better integrated into their communities
• Increased achievement of their IEP/SEN goals and better academic outcomes

What ‘access’ arrangements does your child need?

• All children with disabilities and special needs have a right to education
• Students with disabilities should be provided with ‘reasonable’ accommodations to enable them to access education like anyone else
• The type of accommodation required should be decided in conjunction with the student and his/her parents or caregivers
• Reasonable accommodations may include:
  • Allowing ‘extra time’ to complete any assessments or exams
  • Reducing background noise and sensory overload
  • Provision of ‘keyboard’ or ‘laptops’ for assessments or exams
  • Providing a ‘note-taker’ or a ‘language interpreter’
  • Access to a structured or differentiated curriculum dependent on needs
  • Provision of Braille or alternative communication models
  • Access to sign language, captioning or induction loop technology
  • Access to alternative and augmentative forms of communication, i.e., low-tech or high-tech communication aids
  • Creation of a structured and predictable environment
  • Provision of visual aids or visual timetable
  • Access to psychologists, school counsellors, health or social services
  • Developing an Individual Educational Plan (IEP) and continued monitoring
  • Provision for giving exam in a separate room
  • Provision of a ‘prompter’ and short breaks for assessments and exams

• You can find more information on ‘access’ arrangements on the website of ‘Joint Committee on Qualifications’, https://www.jcq.org.uk/exams-office/access-arrangements-and-special-consideration/forms/

How can you access inclusive education for your child?

• Know: Learn about your rights. Read the SEND Support-Easy read guide for parents https://www.mencap.org.uk/sites/default/files/2016-08/FINAL%20DESIGNED%20Easy%20read%20SENDreforms%20parents%20v11.pdf
• Increase awareness: Offer to give a short talk to staff and or to students to let them know more about your child’s condition and his or her needs. Providing information in plain and simple terms can dispel a lot of myths and help reduce prejudices. Doing so may also make bullying and name-calling less likely as the fear of the unknown is taken away. Your child’s peers are likely to appreciate the information given.
• Training: Consider funding or making a contribution to send your child’s teacher or teaching assistant on a study day or a course relating to your child’s condition. Many of these courses are subsidised and cost less than £100. And you could consider offering this annually/biannually. My child’s teacher and TA took up my offer to attend the ‘hearing impairment study day’ and found these to be immensely helpful in enriching their knowledge and skills. I found this to be an excellent value for my money.
• Share: Your learning, knowledge, skills, and resources you have about your child’s condition with your child’s TA, teacher, and SENCO. I have given a short talk to my child’s school almost every year during primary school. You need not be an expert to do this. You can share your experience as a parent in plain and simple English. The school could arrange this at the beginning or the end of the school day. You may even carry some cake and offer to boil the kettle in the staff kitchen for coffee.
• Fundraise: Consider arranging a fund-raising activity in the school, e.g., cupcake sale, egg-and-spoon race etc. These activities can raise awareness about your child’s condition and be fun.
• Advertise: Take permission to display a poster about the charity relating to your child’s condition on the school message board.
• Reach out: Meet other parents, parent representatives, headteacher and governors to raise awareness, offer information, chat to catch up, ask and enquire.
• Participate: Prepare to meet and discuss your child’s needs and progress at termly reviews of his/her IEP (Individualised Educational Plan) with the SENCO
• Offer support: Ask your child’s teacher and SENCO what we can do to help you to help our child? What could I do to help and support you? How could we work together to enable our child?
• Read: Consider reading Special Educational Needs and Disability code of practice: 0 – 25 years https://www.gov.uk/government/publications/send-code-of-practice-0-to-25
• Collaborate: Find out how to work collaboratively with your SENCO https://www.drsrigada.co.uk/how-to-work-collaboratively-with-your-senco/

As you can see, your child has a right to be included in all aspects of school life, both inside and outside the classroom, no matter what their disability is. Moreover, there are several access arrangements and reasonable adjustments that the school must assess and provide for. These adjustments, adaptations and arrangements can help your child to access learning like anyone else and succeed. As a parent, you need to be their advocate to ensure that this happens.

References & Further reading:

1. UNICEF:https://www.unicef.org/eca/sites/unicef.org.eca/files/IE_summary_accessible_220917_0.pdf
2. United Nations World Autism Awareness day https://www.un.org/en/observances/autism-day
3. Inclusive Education: Understanding Article 24 of the Convention on the Rights of Persons with Disabilities https://www.unicef.org/eca/sites/unicef.org.eca/files/IE_summary_accessible_220917_0.pdf
4. SEND Code of Practice: https://www.gov.uk/government/publications/send-code-of-practice-0-to-25
5. Joint Committee on Qualifications: https://www.jcq.org.uk/exams-office/access-arrangements-and-special-consideration/
6. How to work collaboratively with your School/SENCO https://www.drsrigada.co.uk/how-to-work-collaboratively-with-your-senco/
7. http://worldofinclusion.com/resources/