Dated 4/7/18 to 14/718
One of the most relevant topic for discussion owing to lack of awareness and implementation is on future support systems for our kids.We as parents have empowered ourselves from the whining "what after me " scenario to resorting practical solutions for the issues.Eminents like Swaminathan Rajan, Akila Vaidyanathan,Dr A.K Kundra,Mrs Saswati Singh provided us with vital informations on the subject.They were kind hearted enough to share their previous discussions and fool proof project informations for the welfare of our kids.We as a group express our sincere gratitude to all of you and all the participants as well
The discussion started off on analysing whether marriage is a viable option for life long support.While many parents chose to respond positively to marriage ,a few others expressed their concerns and necessity for the society to set an example by coming forward to marry those in the spectrum.Parents exemplified the successful married life of autistic individuals with support systems from a "trust" to manage finances ,legal affairs and so on.At the same time some parents raised their concerns on the neurotypical sibling sacrificing their life to take care of the special needs sibling.They pointed out that the Nt sibling undergoes immense pressure to take care of the SN sibling.The discussion ended with a conclusion that marriage is a personal choice based on independency,emotional maturity and interpersonal skills..
Dr A.K Kundra suggested Residential home for the future well being of these kids as they would need a little assistance in their lives.He advocated for setting up more reside trial homes for the support and care of these individuals.
Mr Sanjaya Ganesh came up with the idea of "microtrusts" as an option for future care with local tie ups depending on localities,requirement on occasional supports from therapists and vocational experts
A few parents were extremely happy to inform the successful living of spectrum individuals who were employed ,shared a home ,lived independently and had functional social skills.
Though residential homes are an option,parents were apprehensive if the projects built were autism friendly enough with respect to the infrastructure and vocational facilities available.
Mrs Akila Vaidyanathan provided the link to a fool proof project which can be considered as a template to future projects in India
http://www.covaicare.com/wp-content/uploads/2018/03/CovaiCare-Master-Document-for-Persons-with-Disabilities.pdf
Legal Guardianship was dealt and discussed to it's core since most parents were unaware on its details Legal guardians take all decisions on behalf of the person and property of the Sn ward after he acquires 18yrs.Though till 18yrs parents are the natural guardians,they cease to be one once the child is 18yrs.If not applied for legal guardianship the parents can no longer take legal decisions on the child or legally represent the child.
Application form for legal guardianship is available online and Mrs Jasmit very well explained the requirements necessary for applying online.
Raksha,Mattanchery is the local level committe in Ernakulam Dist for the same.(nodal agencies for other dists too were provided).LLC meets once in 3 months and consider appointing or removing the guardian according to National Trust Acts.
(REF..Who can apply for appointment of LG)
The discussion was supported by word documents on Assisted living and Guardianship shared by Swami Sir
Parents doubted if legal guardianship was considered and implemented with enough importance despite the laws and provisions provided by national trust.Many parents liked the idea and emphasized on the need for a trust as decisions concerning the individuals will be taken on consensus by a group of persons rather than an autocratic decision by the individual.
Mrs Anitha Pradeep detailed on the procedures for providing application for LG
Though not mandatory ,Since National trust act 1999 had made provisions for the same,it is always advisable to apply for LG
(REF..Who may apply for LG)
Mahadevan Sir of Adarsh Charitable Trust provided information on promoting special village for our community up to 90 families.Priya Koundinya participated in the discussion by explaining her experiences on how LG can be established in U.K.
The discussion ended by explaining the conditions and procedures necessary to remove legal guardianship if necessary..
We analyse that this was one of the most need of the hour and productive discussions we had..
https://cis-india.org/accessibility/blog/central-government-schemes
http://thenationaltrust.gov.in/auth/llc_pwd.php
http://thenationaltrust.gov.in/content/innerpage/schemes.php
http://vikaspedia.in/social-welfare/differently-abled-welfare/schemes-programmes/legal-guardianship
http://www.thenationaltrust.in
http://www.maxshome.org
*Participants
Gina Vijayakumar
Padmini Hariharan
Prasanthi Vankamamidi
Beena Balakrishnan
Zahi-r-Ibrahim
Prasanth Gangadharan,Learning Alternatives
Vidula
Chitra Subramanian
Anitha Pradeep
Thank you all
#Asd parents and Therapists group,Kerala.
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