All parents are anxious about the future of their children. This anxiety becomes multifaceted for parents of children with developmental disabilities. These parents have to deal with a fear of ensuring a secure future for their child. Their concerns are not limited to financial protection but also ensuring that a guardian can be appointed to safeguard their child’s best interests, upon their demise. The state carries an equal responsibility and needs to support these parents by providing robust laws and policies to ensure the rights of people with intellectual disabilities are protected.
Legislation such as The National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 (National Trust Act), the Rights of Persons with Disability Act, 2016 (RPD Act), and the Mental Health Act, 1987 (Mental Health Act) are essential for protecting the rights and dignity of persons with developmental disorders, and to ensure accessible mental health services.
The National Trust Act enables and empowers persons with disability, provides for disabled persons without families, promotes measures for their care and protection in the event of loss of parents and guardians, and includes a procedure for appointment of guardians and trustees who can ensure protection of their rights. This Act has simplified the procedure of appointment of guardians.
Under the RPD Act, the government is responsible for taking effective measures to ensure that people with benchmark disabilities and those with high support needs to enjoy equal rights. The Act specifies benefits such as reservation in higher education (not less than 5%), government jobs (not less than 4 %), and reservation in allocation of land and poverty alleviation schemes (5% allotment). It further states that government institutes shall provide free and inclusive education for every child with a benchmark disability between the age group of 6 and 18 years.
The Mental Health Act, 1987 is designed for the welfare and support of people living with mental illness. The Act sets up an authority for mental health, which has supervisory and other powers in relation to psychiatric clinics and hospitals. A guardian can be appointed for patients who are unable to sustain themselves. It regulates the procedure of admission and discharge of patients to the hospitals either on a voluntary basis or on request. It ensures the well-being of detained patients through free medical aid.
Welfare Schemes under The National Trust Act
Various schemes are provided under The National Trust Act for the benefit of children suffering from autism and other disabilities. These include – (i) Disha – School Readiness Scheme for children upto 10 years with disabilities (ii) Sahyogi – Caregiver cells for training of caregivers (iii) Badhte Kadam – Support to registered organisations to increase awareness of disabilities (iv) Samarth – Respite home for orphans, families in crisis, persons with disabilities from BPL or Lower Income Group.
Parents/guardians may consider obtaining life/medical/health insurance policies for their children suffering from autism to ease the financial burden. Star Health and Allied Insurance is one of the first insurance companies to roll out a group health policy specifically for persons with autism, which includes medical complications associated with autism such as seizures, tissue and bone injuries and related procedures. The National Trust of India extends an Insurance of upto INR 1,00,000 under the Nirmaya scheme.
Amongst the other provisions detailed above, estate planning is an important part of providing children with intellectual disabilities like autism, with a fulfilling and protected future. To bridge the gaps in the advice received on estate planning by the families of people with intellectual disabilities, iProbono launched a series of workshops in Delhi, Bengaluru, Pune, and Mumbai in 2016 – 2017. These workshops aimed to increase awareness on securing the rights of vulnerable beneficiaries through estate and succession planning.
Our pro bono lawyers encouraged families to delve into estate planning for their children living with intellectual disabilities. The primary audience of the workshops consisted of parents and guardians of the children. Some of the key issues that were discussed:
- Importance of guardianship and the legal processes
- Difference between a Will and a Trust
- The importance of appointing reliable trustees and executors
- Queries on individual family situations
We assisted 250 parents through these workshops and enabled them to appoint guardians and set up trusts and wills. We are keen on strengthening our work on children living with intellectual disabilities through similar workshops in the future. Please contact us in case you are interested in collaborating.
Saurabh Malik – Senior Program Analyst, iProbono and Swati Jain – Senior Communications and Advocacy Officer, iProbono