Rights Of Autistic People And Duties To Autistic Children

Rights of Autistic people:

A. Education

Legal Framework

• The Right to Education Act 2009 safeguards education rights for all children in India, including those with special needs like autism.
• The act ensures free and compulsory education for children aged 6 to 14 and promotes inclusive education.
• Children with disabilities, including autism, can receive education in mainstream schools under the act.
• The act references the Persons with Disabilities (Equal Opportunities, Protection and Full Participation) Act, 1996, which applies to children with disabilities as defined under that Act.
• The act emphasises the importance of reasonable accommodations, individualised education plans, and support mechanisms for including children with disabilities.
• The RPWD Act 2016 mandates free education for all children with disabilities aged 6 to 18.

Inclusive Education Practices

Milestones in disability-inclusive education in India:

1999- Enacted the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act.

2005- Adopted the National Curriculum Framework, which promotes respect for learners’ diversity.

2006- Adopted the National Policy for Persons with Disabilities. The National Focus Group published a position paper on the Education of Children with Special Needs.

2008- Ratified the Convention on the Rights of Persons with Disabilities.

2009- Enacted the Right of Children to Free and Compulsory Education Act.

2016- Enacted the Rights of Persons with Disabilities Act.

2018- Launched Samagra Shiksha, the national flagship education programme.

2020- Adopted the National Education Policy.

The National Education Policy (NEP) 2020:

• The National Education Policy (NEP) 2020 reaffirms inclusive education provisions in the RPWD Act.
• The policy aims for learning for all, focusing on addressing the exclusion of socio-economically disadvantaged groups.
• NEP emphasises including children with disabilities across all educational levels, from early childhood to higher education.
• The policy emphasises providing assistive devices, teaching materials, and learning support for children with disabilities.

Samagra Shiksha:

• Samagra Shiksha is India's flagship education program implemented nationwide through a State Implementation Society at the state/union territory level.
• It replaces Sarva Shiksha Abhiyan, Rashtriya Madhyamik Shiksha Abhiyan, and Teacher Education schemes.
• The program aligns with Sustainable Development Goal 4 targets for universal access, equity, quality, vocationalisation of education, and strengthening of teacher education institutes.
• Samagra Shiksha adopts a zero-rejection policy to ensure no child is left behind.
• It provides a range of educational options, learning aids, mobility assistance, and support services for students with disabilities.
• Educational options include an open learning system, open schools, alternative schooling, distance education, special schools, home-based education, itinerant teacher model, remedial teaching, part-time classes, Community Based Rehabilitation (CBR), and vocational education.

A Case Study:

• A study in Puducherry examined inclusive education for children with autism spectrum disorder (ASD) in mainstream and special schools.
• The study found that children with autism and special needs were more often enrolled in special schools than regular ones.
• Special schools employed various techniques to facilitate learning for children with special needs and autism compared to mainstream schools.
• Behavioural problems and attention deficit were common challenges faced by educators in special schools, requiring attention to prevent adverse learning outcomes.
• The Sarva Shiksha Abhiyan program advocates for enrolling children with special needs, including autism, in mainstream schools.
• Parental attitude, lack of adequate resource personnel, and tailored curriculum were identified as potential barriers to effective inclusion in mainstream schools.
• Universalising early intervention programs for children with special needs, including autism, is necessary to support their transition to mainstream schools.

Provisions by CBSE:

• CBSE provides flexibility in subject choice for students with disabilities, including candidates with autism.
• Students can choose one compulsory language instead of two from class VI to class VIII.
• Students with disabilities can opt for a scribe/amanuensis during examinations.
• Provision of extra time during examinations is provided based on the duration of the examination.
• CBSE ensures easy access to examination centres for students with disabilities, including candidates with autism.

DISHA Centres and the GYANPRABHA Scheme:

• DISHA Centres are established for early intervention to support children with autism spectrum disorder (ASD) and their families. The scheme covers children aged 0 to 10 years and aims to prepare them for school attendance.
• The GYANPRABHA scheme by the National Trust offers financial assistance to individuals with ASD, encouraging them to pursue graduation, post-graduation, and vocational courses.
• The National Handicapped Finance and Development Corporation (MSJE) provides scholarships to Indian students with at least 40% disability for pursuing post-matric, post-secondary technical, and professional courses.

Challenges

• Challenges remain in achieving inclusive education for individuals with autism in India.
• Lack of trained resource persons or special educators in government schools is a significant obstacle.
• Many schools are ill-equipped to include autistic children in regular classrooms, leading to segregated settings undermining inclusive education principles.
• Private special needs settings often become the primary option for children with autism, limiting their access to quality education.
• The absence of standardised services and monitoring mechanisms contributes to inadequate provisions for autistic students.

B. Profession

Legal Framework

• The Rights of Persons with Disabilities Act 2016 recognises autism as one of the 21 recognised disabilities.
• The act aims to protect the rights and provide facilities to individuals with autism, ensuring they are not deprived due to their disorder.
• 4% of employment opportunities in government establishments are reserved for people with disabilities, including those with autism, under the act.
• Individuals with a disability benchmark of 40% are entitled to specific benefits and support under the act.

Support Systems and Initiatives

The Aadhaar Vocational Centre:

• The Aadhaar Vocational Centre, developed by Action for Autism, aims to help autistic adults lead meaningful and dignified lives.
• The centre provides vocational training to enhance the skills and employability of individuals with autism.

Specialisterne:

• Software testing industry is suitable for employing autistic adults with good cognitive skills.
• Specialisterne is a social organisation that focuses on providing job opportunities for individuals with autism in the software testing industry.
• Their approach capitalises on the methodical, motivated, and focused strengths of autistic individuals, making them well-suited for specific tasks in this field.

Other Government initiatives:

• The employability of persons with autism is recognised within the Disability Sector Skill Councils of the Ministry of Skill Development and Entrepreneurship.
• These councils focus on enhancing the skills of individuals with disabilities, including autism, to improve their employment prospects.
• The National Handicapped Finance and Development Corporation, under the Department of Empowerment of Persons with Disabilities, offers loans to individuals with disabilities for self-employment ventures.
• This initiative supports entrepreneurial endeavours and provides self-employment opportunities for individuals with disabilities, including autism.

Challenges

• Despite legal provisions and support systems, challenges persist in effectively employing autistic adults in India.
• Approximately 40% of autistic adults remain unemployed and lack structured daycare settings.
• Only 7% of autistic adults have some form of employment, usually in sheltered vocational centres.
• Difficulties in finding employment can be attributed to challenges in the interview process, communication, and social interactions in the workplace.
• These challenges may hinder the successful integration of autistic adults into mainstream work environments.

C. Medical assistance/Therapy

Legal Framework

• The Rights of Persons with Disabilities Act 2016 and the Mental Health Act 1987 establish a legal framework for ensuring healthcare rights without discrimination based on disability.
• The Mental Health Act emphasises equal treatment for individuals with neurodevelopmental disorders or disabilities in a regular and pleasant environment.
• The legal framework ensures access to medical assistance and therapeutic interventions for individuals with autism.
• Legal aid, sometimes provided at the state's expense, ensures access to justice for individuals with autism.

Government initiatives

• The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities was established in 2000 to empower and enable persons with disabilities.
• The Trust supports registered organisations, addresses the needs of disabled individuals without family support, and promotes their care, protection, equal opportunities, rights, and participation.
• The National Trust initiates schemes and programs to support persons with autism and their families.
• The Samarth Scheme provides residential services, early intervention, special education, vocational training, and recreational activities for persons with autism.
• GHARAUNDA offers lifelong shelter and cares for persons with autism, ensuring their well-being and independence.
• Niramaya is a health insurance scheme that provides comprehensive coverage for individuals with autism and other disabilities, including medical check-ups, hospitalisation, therapy, corrective surgery, transportation, and reimbursement of claims.

Challenges in Accessing Medical Assistance and Therapy

• Availability of diagnostic services for autism varies, impacting the accuracy and timeliness of diagnoses.
• Families from middle to upper socioeconomic classes are more likely to seek therapy for autism.
• Access to healthcare services for autism can be limited by location, income, education, and social stigma, particularly for marginalised communities.
• Social stigma associated with mental disabilities often delays families from seeking a diagnosis.
• There is poor awareness of autism among parents and primary care paediatricians.
• There is a significant delay between symptom recognition by parents and the actual diagnosis of autism.
• On average, parents in India recognise the first symptoms of autism around 25.7 months but wait for approximately 2 years and 8 months before seeking professional help.
• The average age at diagnosis of pervasive developmental disorder is 4 years and 11 months.

D. Social protection

Legal provisions for persons with disabilities, including autism spectrum disorder

Government Schemes

• Vikaas (Day Care): Establishes Vikaas Centres to provide daycare facilities for persons with disabilities, offering age-specific activities and operating for at least 6 hours daily.
• Samarth (Respite Care): Provides respite and residential care for abandoned or orphaned persons with disabilities, including those with autism, in safe and supportive environments.
• Sahyogi (Care Associate Training Scheme): Establishes Care Associate Cells (CACs) to provide primary and advanced training, internships, and support for individuals interested in nurturing care for persons with disabilities.
• Badhte Kadam (Awareness, Community Interaction, and Innovative Project): Promotes community awareness sensitisation on and mainstreaming of persons with disabilities, including those with autism, focusing on inclusivity, education, and fostering understanding.

Challenges Faced

• Employment and Education: Many adults with autism in India find employment in sheltered workplaces or continue attending special schools, even in their 30s and 40s.
• Lack of Self-Advocacy: The absence of an autism self-advocacy movement can be attributed to the stigma surrounding mental disabilities, limiting awareness and understanding.
• Limited Social Understanding: Families often avoid discussing the diagnosis with cognitively able children, resulting in limited understanding and awareness of autism among adults.
• Social Challenges: Adults with autism face difficulties navigating social spaces, experiencing low self-esteem, heightened anxiety levels, and often becoming targets of teasing and bullying.
• Lack of Support: The lack of discourse and support exacerbates the challenges faced by adults with autism in India.

E. Financial security

Legal Framework

• Tax Exemptions: Section 80U of the Income Tax Act allows a deduction of Rs 75,000/- for persons with disabilities (40% or more disability) and Rs 1,25,000/- for persons with severe disabilities (80% or more disability) on taxable income.
• Deductions for Maintenance and Medical Treatment: Under Section 80DD of the Income Tax Act, deductions of Rs 75,000/- and Rs 1,50,000/- can be claimed for individuals with disabilities (40% or more disability) and severe disabilities (80% or more disability) respectively, for the maintenance and medical treatment of dependents with disabilities.

Government Schemes

• Niramaya Health Insurance Scheme: The National Trust offers the Niramaya health insurance scheme, providing comprehensive coverage for individuals with autism and other disabilities, including medical treatment, hospitalisation, therapy, and pre-and post-hospitalization expenses.
• LIC Insurance Plans: LIC India offers Jeevan Aadhar and Jeevan Vishwas insurance plans that provide maturity benefits to individuals with disabilities.
• Bank Account Access: The Reserve Bank of India directs banks to accept guardianship certificates issued by the National Trust, allowing individuals with autism and disabilities to open and operate bank accounts. This ensures accessibility and financial management for disabled individuals.

Duties to Autistic Children

A. Obligation of schools to provide for inclusiveness

• Inclusive Education Policy: Indian schools are mandated by the Right to Education Act, 2009 to provide inclusive education, allowing children with disabilities, including autism, to learn alongside their non-disabled peers.
• Admission and Non-Discrimination: Schools must ensure non-discriminatory admission processes and should not deny admission or discriminate against autistic children based on their disability.
• Individualised Education Plan (IEP): Schools should develop and implement individualised education plans (IEPs) for autistic children, addressing their unique educational, behavioural, and social goals.
• Trained Staff: Schools should have access to trained and qualified staff, including special educators, counsellors, and therapists, with expertise in supporting autistic children.
• Accommodations and Support: Schools are responsible for providing reasonable accommodations and support, such as assistive technology, modified teaching strategies, and sensory accommodations, to ensure equal educational opportunities for autistic students.

B. Fellow children to accept their Autistic friends

• A recent article in The Hindu addressed concerns raised by a mother of a teenager with autism spectrum disorder (ASD) regarding the effectiveness of inclusion in mainstream schools for children with autism. The mother shared her struggles to find acceptance for her son and the advice she received to place him in special needs schools or centres. However, she believed in the importance of inclusive education for promoting empathy and creating a better world.
• Dr Vibha Krishnamurthy, an expert in the field, emphasised the need for inclusive systems that accommodate diversity, including disability. She highlighted the benefits of inclusive education for all children, both with and without disabilities, based on sufficient evidence. Dr Krishnamurthy emphasised the importance of providing academic and other necessary support within the school context and ensuring full participation for children with disabilities.
• However, she acknowledged that existing systems are far from fully inclusive. She stressed the need for inclusive policies, practices, and a culture that fosters acceptance and participation for children with disabilities. While working towards systemic change, she advised caregivers to prioritise their well-being and find a school that welcomes their child, whether inclusive or special needs. Dr Krishnamurthy emphasised that children with disabilities have the right to participate in schooling and all activities available to their peers, and efforts should be directed towards achieving this goal.

C. Duties of Employers to Provide for job opportunities

Companies Embracing Diversity:

• Multinational organisations like JPMorgan, Cisco, Capgemini, and Dell are actively hiring individuals with autism.
• Programs like Autism at Work focus on developing candidate pipelines and celebrating the unique strengths of employees with autism.

Training and Support by EnAble India:

• EnAble India, an NGO based in Bengaluru, plays a significant role in training, supporting, and job coaching individuals with disabilities, including autism.
• Collaboration with companies like SAP, Cisco, and Hatti Kaapi has resulted in successful employment opportunities for candidates trained by the NGO.
• Efforts towards peer sensitisation, advocacy sessions, and overall inclusiveness in the workplace.

Recognising Autistic Strengths:

• Employers appreciate qualities such as attention to detail, consistency, discipline, and punctuality that individuals with autism bring to the workplace.
• Sectors like hotels, banks, and restaurants benefit from the unique strengths of autistic employees.

Job Quotas and the Rights of Persons with Disabilities Act:

• The Rights of Persons with Disabilities Act 2016 has increased job quotas for individuals with disabilities, including autism, in India.
• Suitable education and support systems are crucial in preparing individuals with autism for employment.
• Efforts needed to develop a resource pool and expand job roles to accommodate individuals with diverse support needs.

Impact of COVID-19:

• The pandemic has presented challenges for employment opportunities, but limited work-from-home options have showcased the resilience and adaptability of individuals with autism.
• Companies must continue to innovate and adapt to ensure the meaningful participation of individuals with autism in the evolving work landscape.

D. Duties of public transport providers Bus/Trains/Airlines etc

Rights of Persons with Disabilities Act, 2016:

• Section 41 emphasises the government's responsibility to make transportation accessible.
• The Indian Railways offers up to 75% concession fares for disabled individuals and their escorts in the first and second classes.

Ministry of Civil Aviation's Amendments:

• Amendments to the Carriage by Air rules ensure necessary accommodations during air travel.
• Standard operating procedures guide screening passengers with special needs, enhancing accessibility.

DPNA Code for Individuals with Intellectual or Developmental Disabilities:

• The DPNA code is a recognised Special Service Request (SSR) code used worldwide by airlines.
• Parents can use this code during flight ticket bookings to request additional airline support for children with disabilities.
• Support includes pre-boarding as a family, appropriate seating arrangements, priority check-in, meal service preferences, regular check-ins during the flight, and seating at the front of the plane for quick disembarkation.

Implementation of DPNA Code:

• Airlines in India, such as Air India, Vistara, and SpiceJet, have implemented the DPNA code.
• By adding the code during the booking process, parents can ensure their child receives the necessary assistance and accommodations throughout the journey.

Accompaniment for Mentally Challenged Passengers:

• Some airlines, like Air India, require mentally challenged passengers to be accompanied by a suitable attendant who is briefed about their needs.
• The presence of a designated attendant ensures appropriate support throughout the flight.

E. Duties of Entertainment houses like theatres/Hotels etc

Inclusive Practices in the Hospitality Industry:

• Ministry of Tourism guidelines focus on creating barrier-free environments and ensuring accessibility for all hotel guests, including those with disabilities.
• Hotel application forms should include details of facilities for differently abled guests.
• Facilities may include rooms with attached bathrooms for disabled guests, designated parking spaces, ramps for accessibility in public areas, at least one accessible restaurant, and designated unisex toilets at the lobby level.
• Implementing these provisions improves accessibility and enhances the comfort of individuals with autism and other disabilities in entertainment houses.

Enhancing Accessibility in Hotel Classification:

• Ministry of Tourism revised guidelines mandate primary access and accommodation for disabled individuals in all classes of hotels.
• Three, Four-, and Five-Star hotels are required to provide additional facilities to cater to the needs of disabled guests.
• These measures reflect the government's commitment to promoting inclusivity in the hospitality industry.

Inclusive Measures in Retail:

• Big Bazaar has created an ecosystem that enables hiring individuals with autism and intellectual disabilities.
• They have introduced initiatives like Quiet Hour, offering a shopping experience with reduced sensory stimuli to cater to the needs of individuals with autism.
• These inclusive measures ensure the satisfaction of diverse customer segments while providing employment opportunities.

Benefits of Inclusive Practices in Entertainment Houses:

• Inclusive practices fulfil the duties toward disabled guests and promote a more inclusive society.
• Accessible facilities and accommodations benefit individuals with autism and create a welcoming environment for all guests.
• Inclusive practices can increase customer satisfaction, loyalty, and positive word-of-mouth recommendations.

Author is a practicing lawyer at Kerala High Court

Assisted in research by

1. Thankam Jim (NUJS)
2. Mariya Philip Mampilly (JGLS)
3. Meghana S S (NUALS)
4. Parvathy Pramod (NUALS)
5. Anna Rose Baby (DSNLU)