Frequently Asked Questions
In most of the associations in the world the beneficiaries are the members. Members know their rights and requirements and fight to secure and protect the same. But in Parivaar, the beneficiaries are persons with intellectual and developmental disabilities, most of who lack cognitive ability. In Parivaar members are parents of PwIDD who advocate for the latter.
Parivaar Kerala has District Associations affiliated to it in all districts of Kerala. Under each district association we have Block, Corporation/Municipal/Grama Panchayat Committees. Parents of PwIDD may approach any of these units for membership, duly filling up the application form.
You can join us by submitting an online membership form also. Parents or Guardians of PwIDDs residing or born in Kerala are eligible for Parivaar Kerala Membership. Your membership will be based on the approval by membership committee.
PwIDD (Persons with Intellectual and Developmental Disabilities) means persons with (a) autism; (b) cerebral palsy; (c) mental retardation (intellectual disability) or (d) multiple disabilities (any of the above three combined with any other disability), such disability being duly certified by a competent Medical Board
The National Trust Act, 1999 contains provisions for giving legal protection to the life of property and life of PwIDD in India. Even after attaining majority, a PwIDD may not be having the ability to carry out transactions alone. Thus he/she needs a legally appointed guardian to act for and on his/her behalf, for operating bank account, transacting in properties, availing of housing or bank loans etc. A legal guardian is a person appointed as such by the District Local Level Committee (LLC) under the National Trust. Parents, siblings, relatives and, in their absence, institutions can apply for guardianship to the LLC. Legal Guardianship Certificate is issued by the National Trust under the seal and signature of the Chairman of LLC. The legal guardian is obliged to protect the person and property of the PwIDD.
Niramaya Insurance is one of the schemes of the National Trust, for persons with autism, cerebral palsy, intellectual disability and multiple disabilities. It is a health insurance scheme under which a PwIDD can get reimbursement of medical treatment expenses. The Scheme is for one year, from 1st April to 31st March and has to be renewed. Those who apply for the first time shall fill up the prescribed form and send it to the National Trust through an NGO registered with the National Trust, along with required documents. Claim for reimbursement of medical expenses can be made on receiving Health Card from the National Trust. For renewal, fresh application along with copy of health card shall be submitted.
Intellectual disability is usually present from birth and is evident in adulthood. It is a permanent condition characterised by limitation in intellectual functioning and adaptive behaviour. Intellectual disability cannot be cured by medication but its intensity or effects can be reduced by therapies, life learning skills and activities.
Mental illness means a substantial disorder of thinking, mood, perception, orientation or memory that impairs judgment, behaviour and capacity to recognise reality. It can be a temporary condition, experienced as cycles of life. It can be treated with medication and can be cured.
Intellectual disability is assessed by Psychologist but mental illness is diagnosed by Psychiatrist.
Mental illness means a substantial disorder of thinking, mood, perception, orientation or memory that impairs judgment, behaviour and capacity to recognise reality. It can be a temporary condition, experienced as cycles of life. It can be treated with medication and can be cured.
Intellectual disability is assessed by Psychologist but mental illness is diagnosed by Psychiatrist.
Learning disability is a neurological disorder usually manifest in problems with reading, writing, spelling, reasoning etc. Persons with learning disability may have good cognitive ability and can lead a normal life. Persons with LD need not be intellectually disabled but the intellectually disabled persons usually have learning disability.
- The Rehabilitation Council of India Act, 1992
- The National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999
- The Rights of Persons with Disabilities Act, 2016.
Yes. The Mental Healthcare Act, 2017.
Unique Disability Identity Card (UDID card) is an identity card issued by Government of India for disabled persons. By law this card will serve all the purpose of a disability ID card.
IQ stands for Intelligent Quotient. This is the ratio of mental age to physical age.
IQ = (MA/PA) x 100.
A person's IQ is a score derived from standardized tests that were designed to measure human intelligence and intellectual potential. An IQ score over 140 indicates that you're a genius or nearly a genius, while 120 - 140 is classed as "very superior intelligence". 110 - 119 is "superior intelligence", while 90 - 109 is "normal or average intelligence".
Mental age is an estimate of a person's cognitive development derived from raw score performance on intelligence, achievement, or neuropsychological tests. Mental age is most frequently estimated in children, likely due to the emergence and protracted developmental course of cognitive skills during this period
Traditionally, MR has been classified into 4 categories:
mild MR – IQ from (50-55) to 70.
moderate MR – IQ from (35-40) to (50-55)
severe MR – IQ from (20-25) to (35-40)
profound MR – IQ below (20-25)
IQ = (MA/PA) x 100.
A person's IQ is a score derived from standardized tests that were designed to measure human intelligence and intellectual potential. An IQ score over 140 indicates that you're a genius or nearly a genius, while 120 - 140 is classed as "very superior intelligence". 110 - 119 is "superior intelligence", while 90 - 109 is "normal or average intelligence".
Mental age is an estimate of a person's cognitive development derived from raw score performance on intelligence, achievement, or neuropsychological tests. Mental age is most frequently estimated in children, likely due to the emergence and protracted developmental course of cognitive skills during this period
Traditionally, MR has been classified into 4 categories:
mild MR – IQ from (50-55) to 70.
moderate MR – IQ from (35-40) to (50-55)
severe MR – IQ from (20-25) to (35-40)
profound MR – IQ below (20-25)
There are 3 tools for assessment
- Generic skill assessment check.
- Adult independent living check.
- Vocational assessment check list.
Occupational therapy helps to improve the fine motor skills which are movements of small muscles of the body and it helps to improve the quality of participation of individual in day to day life. But physiotherapy focuses more on gross motor skills which are movement’s related to larger muscles of body and it improves the quality of movement of human body. Psychotherapy is treating for psychological disorders and mental distress by the use of verbal and psychological techniques and this is well connected with behavioral therapy.
Down syndrome is a chromosomal disorder that is caused by the presence of an extra chromosome at pair no 21. Affected children have slanting eyes, flat noses and large tongues. Congenital heart defects and gastrointestinal malformations are common. Most of the children with Down syndrome have mild to moderate mental retardation. 1 in 800 births are generic. If a mother above 45 years conceives, there is increased chance of the child getting Down syndrome.
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. What is the cause of autism?. Research suggests that autism develops from a combination of genetic and non-genetic, or environmental, influences. These influences appear to increase the risk that a child will develop autism. Data shows 1 in 10000 births. In a child with autism, thinking, language, and behavior are all affected. The disorder is about two to four times more common in males than females. Social interaction skills may be missing in them. They may have strange behaviour like ritualist hand movement or repetitive behaviour. Some may have very good IQ, talents in calculation, music etc.
Epilepsy is not an illness. It is caused by abnormal electric discharge in the brain where the person becomes characterized by jerky movements for few seconds to 2 minutes. About 10% ID persons have epilepsy. Repeated fits will damage the brain and may lead to further ID. Fits is another name for Epilepsy.
Yes, Niramaya Insurance scheme.
• A person with disability has rights equally with others to own or inherit property, movable or immovable; to control their financial affairs; and to have access to bank loans, mortgages and other forms of financial credit. Legal capacity is the power to enter into contracts. It entitles a person to enjoy his/her rights. Legal capacity is inherent in everybody including the PwIDD. It is different from mental capacity or decision making ability. A PwIDD may not have the ability to make own decisions even though he enjoys legal capacity.
If a person is not capable of making own decisions, he/she can be provided with necessary support and accommodation to make and communicate decisions according to his/her wishes, without delegating his/her decision making power to another. This is called SDM. Supporters are meant to assist and not control over a person’s decision making. Individual autonomy to make decisions must be respected.
Demonstration projects on SDM were experimented with good results in Kasargode and Ernakulam districts in 2013 jointly by Parivaar Kerala and CBM.
SDM is different from Substituted Decision Making. In SDM the legal power to make decisions stays with the PwD. In Substituted Decision Making the power to make decisions is delegated to another, as in guardianship. SDM is a practical alternative to Substituted Decision Making.
Demonstration projects on SDM were experimented with good results in Kasargode and Ernakulam districts in 2013 jointly by Parivaar Kerala and CBM.
SDM is different from Substituted Decision Making. In SDM the legal power to make decisions stays with the PwD. In Substituted Decision Making the power to make decisions is delegated to another, as in guardianship. SDM is a practical alternative to Substituted Decision Making.
• The United Nations Convention on the Rights of Persons with Disabilities was adopted by the United Nations General Assembly on 13.12.2006. It is an international human rights treaty to protect the rights and dignity of persons with disabilities. It was open for signature on 30.03.2007. It came into force on 03.05.2008. India became a signatory to it on 01.10.2007. It has 163 signatories.
The UNCRPD lays down, “Persons with Disabilities are not ‘objects’ of charity, medical treatment and social protection but subjects with rights who are capable of claiming those rights and making decisions for their lives on their free and informed consent as well as being active members of society.”