Petition to Minister for Social Justice, Dr Muneer
October 12, 2015
Dr. M. K Muneer
1st September,2015
Minister for Panchayats and Social Justice
Sub: Urgent Requirement for regulation of private rehabilitation providers for vulnerable disabled
children.
Greetings to you from Together We Can (TWC).
TWC is an advocacy movement initiated by a group of parents of children with Autism and other neurological disabilities together with like-minded individuals from varying fields such as special educators, psychologists, human rights activists, journalists, teachers and others. The prime objective of the group is to ensure justice to the most vulnerable members of our society - children with disabilities. For this purpose empowering the parents and through them the extended family and local community was seen as utmost important and significantly lacking in our system.
The following are some of the incidents which have happened in the recent past necessitating immediate intervention.
A 5 year old child ( diagnosed with Autism Spectrum Disorder) undergoing occupational therapy services from a private therapy centre in Kochi suffers a very painful bone fracture during therapy and had to undergo an urgent surgery and months of intensive care by the parent. This unfortunate incident brought to light several others horrifying episodes of unsafe and unethical practices within therapy centres. Parents got together to voice the lack of accountability and continued unethical and unsafe practices within therapy centres that was widespread in Kochi and across the state. This eventually led to the formation of Together We Can.
(Annexure 1 – Anecdotal record by Parent of the 5 year old child)
In the wake of significantly unhealthy, unethical and unsafe practices and subsequent denial of justice that were brought to light and experienced by parents of children who seek therapeutic services (such as special education, occupational therapy, speech therapy) from private therapy centres the Together We Can movement was initiated. What started as a “what’s app” group, now has a Facebook Page with close to 1000 followers and hundreds more outside of Facebook.
We managed to raise ample public support through the coverage received through an article on Times of India which read “Group raises concerns of special kids” (Annexure 1 )
Since our initiation we have been conducting a study of therapy practices and services provided within therapy centres, special schools and mainstream schools in Kochi. The study was mainly through informal visits, questionnaires, anecdotal records from parents , observations and interactions with owners of therapy centres, professionals working in the field and parents seeking the services and through direct observations.
The following is a brief of the findings :
1. Parent not a participant of the one to one session between the therapist & their child at the Center. Hardly any centre allows parent to monitor what was ongoing during session through a cctv or one way screen
2. Very few parents were explained what to expect realistically.
3. Parents were rarely involved while formulating the IEP & made aware of progress.
4. Parents were most often not been explained what is being taught, why and how. Limited elaborating on the goals & methods being used were conveyed to the parent.
5. Parents are not recognized as a resource person being serviced & centres have not initiated coordinated efforts with other centres/therapists where the child undergoes therapy.
6. Parents are rarely trained to handle a home program effectively
7. Parents are not shown the specific written plan for the 45 minute to one hour session that is given to their child.
8. Children are not always handled by trained professionals
9. Parents function out of fear and desperation most often of being denied or threatened to be denied further therapy services if they questions when their rights are violated.
10. Centre rarely shows in writing their best practice policies and who to approach in case the parents have a complaint.
It is submitted that the issues being faced by the children with disability was reported in Times of India and has been discussed in the media. This had resulted in many of the parents coming forward with the issues. In the circumstances we had preferred a Representation before the District Collector and placed our concerns for the need of a regulatory body which could lay down guidelines for safe ethical and transparent therapy practices within therapy centres.
(Annexure 3 – Letter to Collector).
It is under these circumstances we are approaching you to bring to your urgent notice the serious violations, rampant exploitation; unethical and unsafe practices of private therapy centres that are mushrooming all over Kerala specifically for children with special needs.
Such gross injustice prevails primarily due to unregulated functioning of therapy centres, special schools and other services provided for children with disabilities.
The issues concerning children with disabilities are three fold
1. Non participatory, non inclusive and unethical therapeutic practices in private therapy centres associated with leading hospitals or privately run clinics.
a. The primary injustice that we would like to bring to your notice is the lack of inclusive approach in therapy. The parents of children with disabilities are expected to wait outside the therapy rooms while therapy is ongoing between an adult trained therapist and a young child with disability. The child is most often not in a position to communicate what happens inside the closed doors of the therapy and it is not monitored by a cctv camera.
b. Significant lack of training and counselling services for parents making them excessively dependent of therapy centres and therapists and unable to take on effective therapy at home due to minimal emphasis on a home program.
c. Lack of written IEP ( Individualized education programs) and minimal accountability on progress makes the system more unjust
d. Lack of trained therapist leaves the parents at the mercy of incompetent therapist and they lose out on the crucial early intervention years of their child.
e. A huge risk of leaving the children falling easy prey abuse at the hands of an adult therapist. Which in the current set will go unnoticed and unreported
2. Non professional methods practiced by Special Schools
a. Most special schools function without written guidelines and goals for individual children and function merely as day care centres.
b. Goals set are mostly irrelevant and not at the functional level of the child.
c. Lack of trained staff makes the situation worse.
d. Parent training is not given importance
3. Mainstreams School’s inability or reluctance to accommodate children with disabilities
a. Though there are strict guidelines by most educational boards as per the RTE Act. It is not put to practice in most schools
b. Inclusion still exists only as a concept predominantly due to significant lack of resources.
c. Children who are not able to cope with a prescribed education board syllabus are not guided appropriately with alternative options leaving the parents at the mercy of others to decide the future of their child as they are not trained enough.
d. Lack of other alternative inclusive options for children with disabilities to grow up with their peer group in a mainstream set up.
We request you to kindly take urgent notice of the situation and initiate action under your able guidance. Parent empowerment and training will go a long way to help change this scenario and will empower them to recognize injustice and raise a voice.
Sincerely
For Together We Can
Seema Lal
Copy to :
1. Shri. Dr. K.M Abraham
Additional Chief Secretatry
Social Justice
2. Shri. V. N. Jithendran
Director
3. Smt. Sobha Koshy
Chairperson
SCPCR
4. Smt. Padmaja Nair
Child Welfare Committee
Ernakulam
