Guardianship of an Autistic Person – Excerpts from a Lawyer’s Notebook
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| Shaun the lead character in the Netflix series Good Doctor is a mild autistic person |
About the Notebook
The
Notebook is the lawyer's mind and the playground of his thoughts. It is confidential,
and it is where a case is built or destroyed.
When the pleadings are scrutinized by many, the notebook claims immunity. Sometimes, it can critically stare at the
lawyer himself, while looking back and re-reading the notes.
This is the case study of real-life characters, of late they are represented as X, Y, and Z, to preserve their identity and privacy. There is a lot of medical literature on autism spectrum disorder (ASD)[i], but the legal literature is scarce. Therefore, it was deemed appropriate to open the lawyer's notebook to reflect on some thoughts, running parallel to litigation that started from a local magistrate court and finally decided by the highest court in the Country
Story of Z
Z
the protagonist, faces a condition medically defined as Autism Spectrum Disorder (ASD for short). He is celebrating his 22nd birthday,
shortly. He suffers from a neuro-developmental condition with difficulty in
communication, understanding relationships, relating with others, etc. He was fortunate to have an early diagnosis
and an opportunity to manage the condition.
The support of X and Y, the mother and father respectively, were
phenomenal. He lived in UAE, with his
parents and elder brother.
X, the mother, dedicated herself to Z's development, while Y was able to contribute financially to provide the best medical support in the world. During his initial developmental years, he attended various special schools in Chennai and UAE, where his mother shadowed him.
X would explain their Chennai days as
follows:
“The day of the Z starts
at 5.00 AM with a yoga session, followed by occupational therapy, and breakfast
at home. Then, Z goes to nursery where I will shadow him till afternoon. Lunch
at home, followed by a remedial class in the therapy center. where he undergoes 'Applied Behavioral Analysis' (speech therapy) and returns home for tea followed by sports sessions. After the sports session, he will
have an Ayurvedic massage. During weekends he had special classes for pottery, a
day out with other children to the beach and church activities, singing
sessions, dance classes, etc..
As Z grew up additional
sessions were introduced like skating, badminton, dance, tennis, piano, drawing, etc.. I partnered him with all his games and activities. Now he has improved various skills however he
always has a dark phase in his life when left alone without me.”
One of the authentic psychological reports showed that his ASD as moderate to severe requiring substantial support. However, Z has exceptional skills in playing piano and swimming. When he turned 17, he was preparing for a world championship in swimming. It was also the time when many countries declared a complete lockdown following the spread of the COVID-19 virus, and the UAE was not an exception.
The Pandemic and its Aftermath
Y was otherwise a very busy person working 10 to 12 hours, a day. He was handsomely compensated for his hard work. There were differences of opinion between X and Y, but they never blew. The active engagement of X with Z, and the busy office schedule of the Y, were actually postponing the worst. The Pandemic and the lockdown, tore the life of Z to pieces, at the inevitable happened.
X, Y, Z, and his elder brother were shut down at closed doors. The differences between X and Y, otherwise dormant surfaced and developed into verbal abuse and physical violence. Z, during his developmental years of training, was never prepared to handle a situation like this.
Z was denied access to X, his primary caregiver, and Y decided to manage him alone, with the assistance of this employee. This change of caregiver was a larger roadblock in his life. Z, with difficulties in understanding relationships and being unable to create new ones, had to live in chronic pain, inflicted by the pandemic and its aftermath.
Court Verdicts and its impact on Z
Exactly, 3 years 26 days, after the first litigation, between X and Y, a Division Bench of Mr. Justice Muhamed Mustaque and Mrs Justice Sophy Thomas delivered its final verdict allowing rotational weekly custody of Z to each parent. The Apex Court confirmed the judgment 10 months and 1 day later. The process of implementation of these verdicts is in progress. All these years Z, lived without his primary caregiver for 19 years. The right of Z to have access to his primary caregiver is yet another story, altogether.
X
approached the Writ Court to appoint her as guardian when Z found that the
Magistrate Court[ii]
and Local Level Committee[iii]
refused to entertain her request for gaining access to Z. The former lacked jurisdiction after Z
attained the majority, while the Committee refused to entertain her request, for Z resided beyond the boundaries of India. The High Court overcame these challenges
through legal interpretation and its reasoning is a good read for students of law.
Click here to read the judgment of the Kerala High Court
X vs Union of India and others (Neutral Citation 2023:KER:80740)
Click here to read the judgment of the Supreme Court of India
Some
of the important observations in X vs Union of India and others have contextual relevance, in understanding how the Division Bench reached its conclusion reads as follows:
“We are of the view that both
parents be appointed as a joint guardian to take care of the incapable adult
till any competent court decides otherwise the incompetency of either of the
parents to take care of the incapable adult. The incapable adult is having
every right to be under the care of his family and both parents. It may not be
conducive for the petitioner to reside along with her estranged husband to take
care of his family and both parents. It may not be conducive for the petitioner
to reside along with her estranged husband to take care of the incapable adult
but nothing prevents her to have rotational custody so as to allow the
incapable adult to enjoy the care, love and protection of both the parents. The
separation of the petitioner from the incapable adult in the light of law as
above is illegal. Denial of access to one parent is also illegal in the light
of the statutory provisions under the Rights of Persons with Disabilities Act.”
The decision of the Courts would lead the way for Z, to enjoy the care love, and protection of both his parents, especially his estranged primary caregiver, X.
Guardianship under the Domestic Law
The story of X, Y, and Z were exceptional on many counts, and hence invoking the extraordinary remedy of the High Court may be justified. However, the situation would have been different had Z has been in India.
We have two enactments to protect the rights and welfare of persons like Z (special persons for short),
namely the National Trust for the Welfare of Persons with Autism, Cerebral Palsy,
Mental Retardation, and Multiple Disabilities Act, 1999 (Act of 1999 for short) and the
Rights of Persons with Disabilities Act 2016 (Act of 2016 for short).
The Act of 1999
It provides for the constitution of a statutory National Trust. The Central Government has entrusted a billion Indian Rupees to the Board of the Trust for the welfare of persons with Autism, Cerebral Palsy,
Mental Retardation, and Multiple Disabilities.
The objectives of the Trust are specified in the statement of objects
and reasons, and the duties of the Trust include legal and ensuring the welfare of special persons.
Duties of the Trust
The appointment of Guardians for special persons is a legal duty of the Trust. A parent, relative, or a registered
organization may apply to the Local Level Committee for the appointment of a
guardian[iv]. An application of an organization will be
entertained, only with the consent of the guardian of the special person. The committee will consider the application,
based on their needs and the purpose for which guardianship is required.
The trust ensures the welfare of special persons through the various schemes formulated by its Board. These include schemes for training, awareness, and capacity building programs and shelter, caregiving, and shelter. The registered associations[v] promoted by parents and relatives of special persons or other good samaritans may implement these schemes, for their welfare.
The Act of 2016
This parliament enacted this law to give effect to the United Nations Convention on the Rights
of Persons with Disabilities, as India is a signatory[vi]. The persons with specified disabilities[vii]
are entitled to rights and entitlements provided under Chapter III. These
rights include the provision for the appointment of a limited guardian or total
support. The Certification of specified
disabilities is the basis for these entitlements[viii].
Autism Spectrum Disorder is a specified disability, under the schedule of the
Act, falling under the category ‘intellectual disability’.
A
person certified with not less than 40% disability crosses the benchmark set under the Act[ix]. The District Court or the Designated Authority
may appoint a limited guardian, to enable a special person to make
legally binding decisions. When the certifying
authority certifies[x],
that the person requires high support[xi]. High support may be intensive support like physical, psychological, or otherwise needed for daily activity. In such cases, the Court of the Authority is competent to order order total support.
Conclusion
The dictum laid down by the Kerala High Court as confirmed by the Supreme Court is a huge milestone in the life of Z and several other special persons. Extending the arms of patens patrie jurisdiction beyond the boundaries of India to ensure the welfare of Z, may bring a bright smile to the face of many others in the future.
On the domestic end, we find that the law for the protection of special persons is very progressive and comprehensive. It meets the benchmark of the indernational standards prescribed as we have brought in the Act of 2016 to ensure the special persons with the rights guaranteed under the UN convension.
[i] A
specified disability defined in the Schedule to the Rights of Persons with Disabilities
Act 2016
[ii] The Magistrate Court under Section
12 of the Prevention of Women Domestic Violence Act
[iii]
Section 13 of the National Trust for the Welfare of Persons with Autism,
Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999
[iv]
Section 2(j) of the National Trust Act 1999 -"persons with
disability" means a person suffering from any of the conditions relating
to autism, cerebral palsy, mental retardation, or a combination of any two or
more of such conditions and includes a person suffering from severe multiple disabilities;
[v] Section 12 (1) of the National Trust
Act 1999
[vi] Preamble to the Rights of Persons
with Disabilities Act 2016
[vii] Specified Disabilities is defined
under Section 2(zc) of the Rights of Persons with Disabilities Act 2016
[viii]
Assessment of specified disability is done under Chapter X of the Rights of
Persons with Disabilities Act 2016
[ix] Definition of 'benchmark disability' under
Section 2(r) of the Rights of Persons with Disabilities Act 2016
[x] Section 58(2)(a) Rights of
Persons with Disabilities Act 2016 provides for certification of disability by the certifying authority.
[xi] Section 2 (l) of the Rights of
Persons with Disabilities Act 2016 – definition of 'high support'
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