'Together We Can' bring transparency in children's therapy

25 May 2018

Anagha Vishakh

Imagine the plight of a mother, waiting outside a therapy center for her non-verbal child with autism only to see that his hand is broken when he comes out. He has to be rushed to the hospital. But no one has a clue about what happened behind closed doors where professionals claim “therapy” happens. You and I wish this was a fabricated story. Unfortunately, it’s not.

This incident paved the way for Together We Can (TWC), an advocacy group spearheaded by Seema Lal, a psychologist and special educator by profession. The group addresses the rights of children with disabilities, primarily focusing with autism spectrum disorder and other neurological disabilities. It is a group comprising professionals, parents, general public and anybody who wants to live in an inclusive society.

“I’ve worked with children with disabilities in rehabs, special schools and mainstream schools too. And I noticed how the therapies are very medically modelled, focusing mainly on how to cure and correct the disability, failing to understand that what is needed is not correction, but an alternate learning process. Leveraging on the strengths of the child and not on their “disability”, and offering new learning tools to channel those to help lead a functional life, is what is needed,” says Seema Lal.

The focus of the centers throughout the country is centered only on the children with the disorder, and does not include the family, who play a vital role in helping the child navigate life. After years of working with families and children, Seema believes that family plays the most important role in shaping the child’s world and skill development especially in the first, most crucial, 10 years of development. While anything and everything is marketed by adding “therapy” after any word, these helpless parents are led to believe that that’s what is best for their children and pay up.

“A lot of mothers and parents came forward asking what they can do, how they should be doing it and I realised that these therapy centers are not parents inclusive and that they happen behind closed doors with no CCTV cameras or one-way screens. Over time, these concerns took an abusive nature and I do not mean just sexual―they were mental, physical and financial,” Seema Lal explains.

Parents were helpless when they realised that not only were they clueless on how to help their child, but their children were going through abuse in the name of “therapy”. They couldn’t do anything about it as many children with autism have sensory issues (sensory seeking or avoiding) and often cannot distinguish between a good touch and a bad touch. Even when they do, they do not have the sufficient communication to let their parents know, seek help or to react to the abuser.

“We are talking about therapists who have been working with these kids for long having experience with children with autism, it’s easier for them to access and manipulate the situation to their advantage. The kids are in such a vulnerable place with an adult trainer inside a closed room which is illegal.”

Under medical ethics, a medical doctor will not examine a child without the presence of the guardian or the parents. No such ethics or best practice guidelines are laid down in such therapy centers and this is what TWC wants to bring about, a regulatory board, which includes parents, to examine the therapy centers in the state to make sure their practices are ethical and not harming anybody.

“It struck me that this model cannot be changed by just talking to the professionals as they were convinced that this was a convenient practice. Including the family was not the goal. We had to do away with the medical way of approaching disability. And when enough care is not given during the intervention stage, we lose out on these kids who eventually have self-regulation issues and we label them as violent and aggressive,” says Seema Lal.

TWC aims to bring about transparency in therapy centers and shift the focus from only the children to their families and empower them so that they can go back and support their children to increase the quality of their lives. “We also want these centers to not just focus on the deficit but also on their strengths and build them, nurture them, balancing both.”

Apart from Seema Lal, the core committee includes Padma Pillai, an entrepreneur and mother of a 13-year-old autistic boy, Preetha Anoop Menon, a lawyer and mother of a nine-year-old autistic boy, and Anita Pradeep, child rights activist, baker and homemaker and mother of a 24-year-old with autism.

Parents need to speak up. There are still some who are scared to do so because either their spouse is in denial of their child’s condition or they are scared if the therapy center might deny help to their child. “We have had mothers creating fake profiles on social media to contact us because their spouse or mothers-in-law are in denial or do not want to get involved in this issue”.

The state government also needs to act on this immediately as there is only one government therapy center in Kochi and they allow only children studying in government schools, thereby denying others who also need it.

Neurological or developmental disorders are hushed up like it is a shameful disease, not realising that it is not a disease, and that children have no choice in how they behave. Would parents try to bury the news of their kid having diabetes or any other physical ailment? Such disorders are as normal as any physical ailment and what is shameful is the stigma surrounding it.

When asked if there is any ideal therapy center that should be looked upon and followed, Seema Lal had something interesting to say. “There is no center I can point to except for our own homes. The ideal care centers are our homes because that’s where kids get most care from. In fact, the parents and immediate relatives are the ones who need professional help so that they can help the kids at home. In short, the ideal care center is home, and the ideal therapist is the parent.”

Over the course of three years since TWC was formed, awareness in parents have increased tremendously. “We thought we were making a change only in Kochi since we started here, but parents from other states and abroad even have contacted us and sent us videos regarding the problems they were facing.”

And with the help of Human Rights Law Network, they filed a petition to Kerala State Commission for Protection of Child Rights in April 2015 and almost after a year and a half, in 2016 a panel of 14 members reviewed the petition and passed an ordeal with recommendations to have district committees, which also includes parents, monitor the working of therapy centers. And to have state level meetings monthly in order to lay down best therapy practices. Unfortunately, nothing came off it. Later in May 2017, they went ahead and filed a Public Interest Litigation (PIL).

“We are not anti-anything, least of all therapy or therapy centers. We are only trying to stop abuse, bullying and exploitation of parents and children with disability. We are FOR a regulatory body, FOR a healthy quality of life for these children, FOR parent inclusive therapies and FOR an inclusive society, is it a wrong thing to be?” Seema Lal asks.

theweek.in/leisure/society/2018/05/25/Together-we-can-bring-transparency-in-childrens-therapy.html

It’s a free-for-all at therapy centres

8 April, 2018

Sudha Nambudiri

Voices of the marginalised must be heard

The state is yet to formulate strict guidelines for the functioning of autism therapy centres. Following a complaint from a parent’s forum, Together We Can, the Kerala state commission for protection of child rights (KSCPCR) had in a report sought the state health and social justice department’s intervention in bringing minimum standards to therapy centres.

“We have been running from pillar to post to make officials understand that there is no regulation in the functioning of the therapy centres. Though everybody acknowledges the loophole, there has been no action from the state and hence we have filed a public interest litigation in the Kerala high court,” said Seema Lal, founder, Together We Can.

At a recent meeting in Thiruvananthapuram, the KSCPCR called on the state government to ensure minimum standards for centres offering therapy to children and ensure presence of parent/support person during the therapy sessions.

The meeting attended by Ummuselma C, joint director (health), directorate of urban affairs and V S Santosh, under-secretary to government, decided to ask the health department to ensure that therapy centres are included in the newly-approved Clinical Establishments Act According to the KSCPCR report, the local self-government department should frame rules for these therapy centres. At the time of registration, certain standards need to be verified in terms of infrastructure and the qualification of the persons attending to the children.

There must be provision to ensure that parents/support person to be present during therapy. It also sought to look into reasons why block resource centres (BRC) refuses occupational therapy to children other than those who go to government schools.

“We have been petitioning the state governments and the Centre, seeking a monitoring mechanism for institutions dealing with care or therapy for special children. There’s no budgetary allocation and hence nobody wants to consider it. There’s a lot of hatred and abuse in many of these institutions as there are no trained or competent staff. With no monitoring mechanisms, it is a free for all,” said Muralidharan V, convener, National Platform for Rights of Disabled.
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timesofindia.indiatimes.com/city/kochi/its-a-free-for-all-at-therapy-centres/articleshow/63665265.cms

#TogetherWeCan – A movement in the rising in Kochi

Oct, 17, 2017

WHAT is TogetherWeCan?

TogetherWeCan is an advocacy group addressing the rights of children with autism spectrum disorder and other neurological disabilities. It is an informal group that started off as a WhatsApp group and Facebook page, about two years ago. Today, it enjoys the steadfast support of 2000 plus people from all walks of life, including professionals, parents, disability rights activists, media, students, and general public, from across the country and abroad. TogetherWeCan, based out of Kochi, Kerala, is a true indicator of how a small group of committed people can actually make a difference.

WHY is Autism our priority?

Autism is a neurological disorder that renders a child challenged in multiple ways by interfering in their communicative and sensory pathways. No two cases of Autism are the same and till date, no foolproof diagnostic or remedial processes have been identified.

Centres for Disease Control and Prevention (CDC) report of 2016 states, 1 in 68 children are diagnosed as Autistic. CDC reported in 2012, that 1 in 88 children were Autistic in the U.S – a nearly 25% increase from 2006, when the rate was 1 in 110; and a stunning 78% increase since 2000–02, when the CDC first began tracking the disorder and estimated the rate at 1 in 150 children.

Apart from the use of pharmacotherapy for certain layers of sensory disorders and resulting behaviours/anxieties, the major thrust and focus has been on a four-step therapy programme advised for children on the spectrum, to help them become functionally independent and to promote integration into the mainstream.

Speech & Language Therapy, Occupational Therapy, Behavioural Therapy and Special Education are started as early as infancy, for many, could go well into adulthood. For paramedical and rehabilitative health practitioners, this has opened up a veritable buffet of opportunities. As the only avenue of hope for parents of children with Autistic Spectrum Disorder, therapy centres have the opportunity to partner with their “clients” for the long term, getting assured business without ever having to spend on sales or marketing. Word of mouth and referrals provides the bulk of new traffic. All that a therapy entrepreneur needs to work on is delivering consistent, quality service.

WHERE did we begin?

Unfortunately what should have been a clean, logical, process oriented business for the therapist or therapy center ends up being a messy and disorganized venture, with daily encounters with unsatisfied and often irate parents or caregivers. In addition there are unempowered diffident employees who spend the hours but do not produce results. Malpractices are rampant which cannot ever be tracked or controlled for lack of clarity and standardization. What could have been a win-win venture for the therapy center and the children with Autism, is today in deep chaos of mistrust and maltreatment.

Every day, the media carries stories of children with neurological disabilities being physically, sexually and emotionally abused at the hands of therapists or special school staff. Combined with the apparent lack of rehabilitative results that leaves most parents deeply dissatisfied, the atmosphere today is one of confusion and distress.

Faced with this deadlock, parents and a few concerned professionals started TogetherWeCan. Since its inception in March 2015, TwC has been appealing to the government machinery to formulate regulations in rehabilitation, overhaul the therapy curriculum, and ensure the development of best practises & hygiene factors while simultaneously working on raising awareness about Autism and the issues these children face in everyday life.

TwC succeeded in getting the Kerala State Commission for Child Protection of Child Rights (KeSCPCR) to conduct prompt and widespread consultations, an audit of therapy facilities and for a few minimum guidelines to be enforced. Despite petitions to the Ernakulam Collector (2015), the Child Welfare Committee (2015), the Health Minister of Kerala (2015) and finally an appeal to the Health Secretary of the state (2016) there has been no concrete action from the concerned authorities.

TwC has now approached the High Court of Kerala with a Public Interest Litigation (PIL). The PIL seeks immediate implementation to the KeSCPCR guidelines and formation of necessary legislation to ensure children with autism have the right to be accompanied by the primary caregiver in every single instance of rehabilitative therapy.

With the PIL, TwC hopes to remove the fog of ambiguity and ad-hoc anarchy that pervades the rehabilitation profession, and establish a conducive, fair and symbiotic environment where therapy centers and children with neurological disabilities can flourish and thrive.

To make this a matter of Public Interest, the TwC is now running an active video campaign through their social media page on Facebook wherein people from different walks of life, including national level activists, are raising their voice in support.

In most developed countries there are well defined best-practices and regulations, besides systematic audit by the social service wings. By enabling the parents financially through insurance and grants, the children on the spectrum and the therapy entrepreneurs have a mutually rewarding relationship.

In India, regulations with respect to rehabilitation professionals or centres are scant. The curriculum is severely lacking, when it comes to Autism and other neurological disorders, for which the studies are recent and are being constantly updated. Professionals have marginal to nil practical exposure and theoretically learn curriculum that is wholly outdated.

TogetherWeCan sends an appeal to one and all: Together We Must raise our voices for those thousands of children who cannot speak for themselves.

magazine.cochinherald.com/feature/a-movement-in-the-rising-togetherwecan-twc-kochi

Kochi: Parents of autistic kids on a campaign mode

13 June 2017

Sudha Nambudiri

KOCHI: Frustrated because of their failure to draw attention of authorities to the sorry state of affairs at therapy centres, parents of autistic children have started using social media videos to tell their stories. These parents want to be with the children during the speech, behaviour and occupational therapy so that they can help them.

Roshni and Sandeep Kumar moved back to Dubai from Kochi after the autism therapy centres failed them. Of their two children, their younger is autistic. “We were in Dubai but decided to come to Kochi because there were good therapy centres. We didn't have much knowledge on how to deal with an autistic child. We would sit outside while our child would be in with the therapist. I did not know what happened inside but realised that it is not making any difference.So we came back to Dubai. Here the centres insist that the parent should be with the child for the first one year because the sessions are called Parent and Child Training (PACT).Now my child has progressed and he has become fairly self-sufficient,“ they said through a post on the Facebook page Together We Can.

Anita Pradeep speaks of parental role and the changes it made in her son Brian with whom she spent time in the therapy centres outside the state.

“It is very sad to hear about the closed door therapy sessions here.More than safety issues, parents need training. We need transparency and a regulatory body to oversee what is happening at these centres.“

The videos have gained popularity after the incident at the Palarivattom Daycare centre where tales of abuse of special children also came out. Preetha Anoop Menon in her video talks of how her son. “We couldn't manage him and there was no improvement too though I sat every day in front of the centre while my son was inside. One day we heard a cry during a session.When we rushed in, we saw that his arm was broken. From then on I have insisted on being with him and it has made a difference,“ she says in the video.

Seema Lal, psychologist and coordinator of an informal parents group Together We Can, says that they have been trying for a year to get authorities to listen to them.“We realised that something needs to be done to make the society understand the problems of autistic children. We filed a public interest litigation in this regard recently ,“ she said. Biju Isaac of Autism Club in his video says that sessions in which parents are forced to sit outside are not helping. “If we ask them what was done inside, they don't say because they are poor communicators. Closed door sessions are happening because therapists are not confident about doing it right,“ says Biju.

Fathima, another parent says in a video that it is very important to have early progress. “We are not against therapy centres but without a regulatory body, this is the only way to raise the voice for our own children,“ she said.
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timesofindia.indiatimes.com/city/kochi/kochi-parents-of-autistic-kids-on-a-campaign-mode/articleshow/59117971.cms

ചികിത്സിക്കേണ്ടത് ഈ തെറാപ്പിസ്റ്റുകളെ

ലീലാ മേനോന്‍ November 25, 2015


ഓട്ടിസം ബാധിച്ച ഒരു കുട്ടിക്ക് സമൂഹത്തിന്റെ ഭാഗമാകണമെങ്കില്‍ തെറാപ്പി സെന്ററുകളില്‍നിന്ന് സ്‌പെഷ്യല്‍ തെറാപ്പി അത്യാവശ്യമാണ്. ഇത് ലഭിക്കണമെങ്കില്‍ ആശുപത്രികളോടനുബന്ധമായും അല്ലാതെയും പ്രവര്‍ത്തിക്കുന്ന ഇത്തരം സെന്ററുകള്‍ വേണം. അതോടൊപ്പം തന്നെ മാതാപിതാക്കള്‍ക്കും അവരെ മുഖ്യധാരയില്‍ കൊണ്ടുവരേണ്ടതെങ്ങനെ എന്ന പരിശീലനം നല്‍കിയിരിക്കണം.

ഇന്ന് കുട്ടികളിലെ പെരുമാറ്റ വൈകല്യം ചികിത്സിക്കാന്‍ എന്ന പേരില്‍ യാതൊരു യോഗ്യതയുമില്ലാത്തവര്‍ നടത്തുന്ന സ്ഥാപനങ്ങള്‍ പെരുകുകയാണ്. പെരുമാറ്റ വൈകല്യ ചികിത്സയുടെ ഫീസ് ഒരു മണിക്കൂറിന് 400 മുതല്‍ 800 രൂപ വരെയാണ്.




ജവഹര്‍ലാല്‍ നെഹ്‌റുവിന്റെ ജന്മദിനം ശിശുദിനമായി രാജ്യമെങ്ങും ആഘോഷിക്കപ്പെടുമ്പോഴും കേരളത്തില്‍ (മറ്റിടങ്ങളിലും) ബാല-ബാലികമാര്‍ക്കു നേരെ അരങ്ങേറുന്ന കൊടിയ പീഡനങ്ങള്‍ മനഃസാക്ഷി മരവിച്ചിട്ടില്ലാത്തവരെ ഞെട്ടിക്കുന്നതാണ്.


2014-2015 ല്‍ മാത്രം 924 ചൈല്‍ഡ് ലൈനുകളില്‍ 754 പെണ്‍കുട്ടികളും 170 ആണ്‍കുട്ടികളും ലൈംഗികപീഡനത്തിന് ഇരയായതായാണ് റിപ്പോര്‍ട്ട്. കോടതികളില്‍ കെട്ടിക്കിടക്കുന്ന കേസുകള്‍ മാത്രം 9000 ആണ്. 2012 ല്‍ രൂപീകരിച്ച പ്രൊട്ടക്ഷന്‍ ഓഫ് ചില്‍ഡ്രന്‍ ഫ്രം സെക്ഷ്വല്‍ ഒഫന്‍സസ് ആക്ട് (പിഒസിഎസ്ഒ) ഇക്കാര്യത്തില്‍ നിസ്സംഗമാണ്. മാനഭംഗപ്പെടുത്തല്‍ ഏഴുവര്‍ഷം മുതല്‍ ജീവപര്യന്തം വരെ തടവുശിക്ഷ ലഭിക്കുന്ന കുറ്റമാണ്. ലൈംഗികാതിക്രമത്തിന് 10 വര്‍ഷം മുതല്‍ ജീവപര്യന്തം വരെ ലഭിക്കാം. പറഞ്ഞിട്ടെന്തു കാര്യം, ഏട്ടിലെ പശു പുല്ലു തിന്നില്ലല്ലോ.


ഈ ലേഖനത്തിന്റെ വിഷയം ഇതല്ല, ഓട്ടിസം പോലുള്ള മാനസിക-മസ്തിഷ്‌ക വൈകല്യങ്ങളുള്ള കുട്ടികള്‍ക്കെതിരെ നീചവും ഭയാനകവുമായ തരത്തില്‍ നടക്കുന്ന ലൈംഗികപീഡനമാണ്. കുട്ടികള്‍ക്ക് അവര്‍ക്കുനേരെ നടക്കുന്ന അക്രമം വിവരിക്കാന്‍ വാക്കുകളില്ല. പ്രത്യേകിച്ച് ഓട്ടിസം ബാധിച്ച കുട്ടികള്‍ക്ക്. ഓട്ടിസം, സെറിബ്രല്‍ പാള്‍സി മുതലായ പെരുമാറ്റ വൈകല്യങ്ങള്‍ മാറ്റാന്‍ ഇപ്പോള്‍ പെരുമാറ്റ വൈകല്യ ചികിത്സ എന്ന പേരില്‍ വ്യാജ സ്ഥാപനങ്ങള്‍ പെരുകുകയാണ്. ഇത്തരം അനധികൃത സ്ഥാപനങ്ങള്‍ക്കെതിരെ നടപടി സ്വീകരിക്കാന്‍ ജില്ലാ കളക്ടറുടെ നിര്‍ദ്ദേശമുണ്ട്.


പക്ഷെ പീഡനം തുടര്‍ക്കഥയാണ്. ഇതിനുള്ള ഒരു പ്രധാന കാരണം ചികിത്സാരീതികളെപ്പറ്റിയുള്ള മാതാപിതാക്കളുടെ അജ്ഞതയും അവരെ ചികിത്സാ സമയത്ത് മുറിയില്‍ കയറിയിരിക്കാന്‍ തെറാപ്പിസ്റ്റുകള്‍ അനുവദിക്കാത്തതുമാണ്. സ്‌പെഷ്യല്‍ തെറാപ്പി എന്ന പേരില്‍ നല്‍കുന്ന ചികിത്സയെപ്പറ്റി മാതാപിതാക്കള്‍ അജ്ഞരുമാണ്. എങ്ങനെയെങ്കിലും തന്റെ കുട്ടിയുടെ രോഗം മാറട്ടെ എന്ന ആകാംക്ഷയില്‍ തെറാപ്പിസ്റ്റ് വ്യാജനാണോ എന്നവര്‍ ശ്രദ്ധിക്കുന്നുമില്ല.


ഓട്ടിസം ബാധിച്ച ഒരു കുട്ടിക്ക് സമൂഹത്തിന്റെ ഭാഗമാകണമെങ്കില്‍ തെറാപ്പി സെന്ററുകളില്‍നിന്ന് സ്‌പെഷ്യല്‍ തെറാപ്പി അത്യാവശ്യമാണ്. ഇത് ലഭിക്കണമെങ്കില്‍ ആശുപത്രികളോടനുബന്ധമായും അല്ലാതെയും പ്രവര്‍ത്തിക്കുന്ന ഇത്തരം സെന്ററുകള്‍ വേണം. അതോടൊപ്പം തന്നെ മാതാപിതാക്കള്‍ക്കും അവരെ മുഖ്യധാരയില്‍ കൊണ്ടുവരേണ്ടതെങ്ങനെ എന്ന പരിശീലനം നല്‍കിയിരിക്കണം. ഇന്ന് കുട്ടികളിലെ പെരുമാറ്റ വൈകല്യം ചികിത്സിക്കാന്‍ എന്ന പേരില്‍ യാതൊരു യോഗ്യതയുമില്ലാത്തവര്‍ നടത്തുന്ന സ്ഥാപനങ്ങള്‍ പെരുകുകയാണ്.


പെരുമാറ്റ വൈകല്യ ചികിത്സയുടെ ഫീസ് ഒരു മണിക്കൂറിന് 400 മുതല്‍ 800 രൂപവരെയാണ്.
ഈ പ്രശ്‌നം ജനശ്രദ്ധയില്‍ പെട്ടത് ഓട്ടിസം ബാധിച്ച ഒരു കുട്ടിയുടെ കൈ രണ്ടായി ഒടിഞ്ഞപ്പോഴാണ്. ഓട്ടിസം ബാധിച്ച കുട്ടിയ്ക്ക് വേദന തിരിച്ചറിയാന്‍ സാധ്യമല്ലെന്നിരിക്കെ എത്ര ഹീനമായ പെരുമാറ്റമായിരിക്കും തെറാപ്പിസ്റ്റില്‍നിന്ന് ഉണ്ടായതെന്ന് ഊഹിക്കാവുന്നതേയുള്ളൂ.


ഇത്തരം സെന്ററുകളില്‍ മാതാപിതാക്കളെ അകത്തു പ്രവേശിക്കാനോ, അകത്തെന്താണ് നടക്കുന്നത് എന്തെന്നറിയാന്‍ സിസിടിവി ക്യാമറകള്‍ സ്ഥാപിക്കാനോ ‘വ്യാജ ഡോക്ടര്‍മാര്‍’ തയ്യാറല്ല. അഞ്ചുവയസ്സില്‍ താഴെയുള്ള കുട്ടികള്‍ക്കാണ് ഇത്തരം അനധികൃത സ്ഥാപനങ്ങളില്‍ തെറാപ്പി നല്‍കുന്നത്. മുറിയ്ക്കുള്ളില്‍ നടക്കുന്നത് എന്താണെന്ന് ദൈവത്തിന് പോലും അറിയാത്ത സ്ഥിതിയാണ്.


ഓട്ടിസംപോലുള്ള രോഗങ്ങള്‍ ബാധിച്ചവരെ എങ്ങനെ പരിരക്ഷിക്കണം എന്ന കാര്യത്തില്‍ മാതാപിതാക്കള്‍ക്കുകൂടി പരിശീലനം ലഭിക്കണം. എങ്കില്‍മാത്രമേ അവര്‍ക്ക് വീട്ടില്‍ രോഗികള്‍ക്ക് ആവശ്യമായ പരിചരണം നല്‍കാന്‍ കഴിയൂ. എന്നാല്‍ തന്റെ കുട്ടിക്ക് ഓട്ടിസമുണ്ടെന്ന് സമ്മതിക്കാന്‍ പോലും അമ്മമാര്‍ പലപ്പോഴും തയ്യാറല്ല.


മൂന്നുവര്‍ഷത്തിനുള്ളില്‍ കേരളത്തില്‍ ലൈംഗിക പീഡനത്തിനിരയായത് 3369 കുട്ടികളാണ്. ഇത് ‘പോക്‌സോ’മിന്റെ കണക്കാണ്. 2012 ല്‍ രാജ്യത്താകെ ലൈംഗിക കുറ്റകൃത്യങ്ങള്‍ക്കിരയായത് രണ്ടരലക്ഷത്തോളം പേരാണ്. ഇതില്‍ രണ്ടു വയസ്സിനും പത്തുവയസ്സിനുമിടയിലുള്ള 1051 കുട്ടികളും, 2074 പേര്‍ പത്തിനും 14 നും ഇടയില്‍ പ്രായമുള്ള കുട്ടികളുമാണ്. നഗ്നതാ പ്രദര്‍ശനം, ദ്വയാര്‍ത്ഥ പ്രയോഗം, അശ്ലീല വീഡിയോ പ്രദര്‍ശനം മുതലായവ ലൈംഗിക ബന്ധത്തിന് പ്രേരിപ്പിക്കുന്ന കുറ്റകൃത്യങ്ങളില്‍പ്പെടുന്നു. ഇത്തരം വ്യാജതെറാപ്പി സെന്ററുകളില്‍ 19 വയസ്സില്‍ താഴെയുള്ള പെണ്‍കുട്ടികള്‍ ഗര്‍ഭിണികളായ കേസുകളും ഉണ്ട്.


മദ്യകേരളം ഇപ്പോള്‍ കാമഭ്രാന്തരുടെ നാടായി മാറിയെന്ന് തെളിയിക്കുന്നതാണ് സ്ത്രീകള്‍ക്ക് നേരെ വര്‍ധിച്ചുവരുന്ന ലൈംഗിക പീഡനങ്ങള്‍. പക്ഷേ അക്രമികള്‍ കുട്ടികളെപ്പോലും തങ്ങളുടെ ഇരകളാക്കുമ്പോള്‍ ഒരു തലമുറ തന്നെ ‘പെര്‍വേര്‍ട്‌സ്’ ആയവരുടെ സമൂഹമായി മാറുന്നുവെന്ന് കരുതേണ്ടിവരുന്നു.


മറ്റൊരു വസ്തുത വീടിനുള്ളില്‍ പരിശീലനം നല്‍കുന്നതിന് ഒരു ആധികാരിക രേഖയും ഇല്ല എന്നതാണ്. വൈകല്യങ്ങളുള്ള കുട്ടികള്‍ക്ക് 20 മണിക്കൂറെങ്കിലും തെറാപ്പി ലഭിക്കേണ്ടത് അത്യാവശ്യമാണ്. മാതാപിതാക്കള്‍ക്ക് പരിശീലനം നല്‍കിയാലേ ഈ 20 മണിക്കൂര്‍ പരിശീലനം സാധ്യമാകുകയുളളൂ. തെറാപ്പിസ്റ്റുകള്‍ നല്‍കുന്ന 45 മിനിറ്റ് മുതല്‍ ഒരു മണിക്കൂര്‍ വരെയുള്ള സ്‌പെഷ്യല്‍ പരിശീലനത്തിന്റെ വിശദവിവരങ്ങളും മാതാപിതാക്കള്‍ക്കറിയില്ല. ഈ സെന്ററുകള്‍ ഇപ്പോള്‍ പ്രവര്‍ത്തിക്കുന്നത് ‘ഡേ കെയര്‍’ സെന്ററുകള്‍ പോലെയാണ്. ഒരു കുട്ടിയുടെ വൈകല്യങ്ങള്‍ പരിഹരിക്കാനുള്ള പരിശീലനം പത്ത് വയസ്സിനുള്ളില്‍ ലഭിച്ചിരിക്കണം. ഈ തെറാപ്പി സെന്ററുകളെ മോണിറ്റര്‍ ചെയ്യാന്‍ സംവിധാനങ്ങളുമില്ല.


ഇവിടെയാണ് സീമ ലാല്‍ എന്ന സ്‌പെഷ്യല്‍ പരിശീലകയുടെ നേതൃത്വത്തില്‍ ‘ടുഗദര്‍ വി ക്യാന്‍’ എന്ന പേരില്‍ ഓട്ടിസം, സെറിബ്രല്‍ പാള്‍സി പോലുള്ള വൈകല്യങ്ങള്‍ ബാധിച്ച കുട്ടികളുടെ രക്ഷിതാക്കള്‍ക്കായി രൂപീകരിക്കപ്പെട്ടിട്ടുള്ള സംഘടനയുടെ പ്രസക്തി. ഈ രംഗത്തുള്ള അനാരോഗ്യപ്രവണതകള്‍ക്കെതിരെയും നീതി ലഭിക്കാത്തതിനെതിരെയുമാണ് ഈ സംഘടന രൂപീകരിക്കപ്പെട്ടത്. സംഘടനക്ക് 1000 അനുയായികളുള്ള ഫേസ്ബുക്ക് പേജും ഉണ്ട്.
രക്ഷിതാക്കള്‍ ഈ രംഗത്തുള്ള അനാരോഗ്യ പ്രവണതകളെപ്പറ്റി മന്ത്രി മുനീറിന് അപേക്ഷയും സമര്‍പ്പിച്ചുകഴിഞ്ഞു. ഇതുകൂടാതെ ഈ സെന്ററുകളെ രജിസ്റ്റര്‍ ചെയ്ത് ചാരിറ്റബിള്‍ സൊസൈറ്റികള്‍ ആക്കണമെന്നും അവ ഏതെങ്കിലും ആശുപത്രിയുടെയോ മനഃശാസ്ത്ര ചികിത്സാ ഡിപ്പാര്‍ട്ടുമെന്റിന്റെയോ ഭാഗമായിരിക്കണമെന്നും അല്ലെങ്കില്‍ വൈകല്യങ്ങളുള്ള കുട്ടികളെ പഠിപ്പിക്കുന്ന സ്‌പെഷ്യല്‍ സ്‌കൂളിന്റെ ഭാഗമാക്കണമെന്നും അപേക്ഷിച്ച് ജില്ലാ കളക്ടര്‍ക്കും കത്ത് നല്‍കിയിട്ടുണ്ട്.


സീമാ ലാല്‍ സ്വഭാവ വൈകല്യമുള്ള കുട്ടികള്‍ പഠിപ്പിക്കുന്ന അധ്യാപിക ആയതിനാല്‍ അവരുടെ ഇക്കാര്യത്തിലുള്ള പ്രതിബദ്ധത അഗാധമാണ്. ഇത്തരം പ്രതിബദ്ധതമാത്രമേ ഇന്ന് ഈ വൈകല്യമുള്ള കുട്ടികളുടെ പരിശീലനത്തിനും അവരെ ഭാവിയില്‍ സമൂഹത്തിലെ പൗരന്മാരാക്കാനും സഹായമാകുകയുള്ളൂ.


‘ടുഗദര്‍ വി ക്യാന്‍’ (ടിഡബ്ല്യുസി) ഈ രംഗത്തു നടന്നുവരുന്ന പീഡനങ്ങള്‍ക്കെതിരെ രക്ഷിതാക്കളെയും ഈ രംഗത്ത് പ്രവര്‍ത്തിക്കുന്ന പ്രൊഫഷണലുകളെയും സമൂഹത്തെയും കോര്‍ത്തിണക്കി ഒരു പ്രചാരണം തുടങ്ങിയിരിക്കുകയാണ്. വിദഗ്ദ്ധ പരിശീലനം ലഭിച്ച ഏജന്‍സികള്‍ ഈ സെന്ററുകളുടെ പ്രവര്‍ത്തനം നിരീക്ഷിക്കണമെന്ന നിര്‍ദ്ദേശവും സംഘടന മുന്നോട്ടുവച്ചിട്ടുണ്ട്. രണ്ടാമത്തെ ഘട്ടത്തില്‍ എല്ലാ രക്ഷിതാക്കളും ഈ സംരംഭത്തെ പിന്തുണക്കുന്നു എന്നും അവകാശങ്ങള്‍ സംരക്ഷിക്കുമെന്നും എഴുതി നല്‍കുകയും വേണം. ഇപ്പോള്‍ എറണാകുളം ജില്ലാ കളക്ടര്‍ രാജമാണിക്യം വ്യാജസെന്ററുകള്‍ക്കെതിരെ കര്‍ശന നടപടി സ്വീകരിക്കാന്‍ ഉദ്യോഗസ്ഥര്‍ക്ക് നിര്‍ദ്ദേശം നല്‍കിക്കഴിഞ്ഞു. ഈ സെന്ററുകള്‍ റിഹാബിലിറ്റേഷന്‍ കൗണ്‍സില്‍ ഓഫ് ഇന്ത്യയില്‍ രജിസ്റ്റര്‍ ചെയ്തിട്ടുകൂടിയില്ല. എന്നാല്‍ ഇത്തരം നിര്‍ദ്ദേശങ്ങള്‍ കടലാസില്‍ മാത്രം ഒതുങ്ങാനുള്ള സാധ്യതയാണേറെ. എങ്കിലും പ്രതികരണത്തിന്റെ അഭാവം ഉണ്ടാകരുത്.


കളക്ടറുടെ നടപടിക്കുശേഷം രക്ഷിതാക്കള്‍ തങ്ങളുടെ സ്‌പെഷ്യല്‍ സ്‌കൂളുകളിലെ ദുരനുഭവങ്ങള്‍ ഫേസ്ബുക്കില്‍ പോസ്റ്റ് ചെയ്തുതുടങ്ങി. ഒരു ഒക്യുപ്പേഷണല്‍ തെറാപ്പിസ്റ്റ് ഓട്ടിസത്തിന് സൂചി ഉപയോഗിക്കാത്ത അക്യുപങ്ചര്‍ ചികിത്സ നല്‍കാമെന്ന് ഒരാള്‍ പോസ്റ്റ് ചെയ്ത വിവരം പത്മ പിള്ള ഫേസ് ബുക്കില്‍ ചൂണ്ടിക്കാണിക്കുന്നു. മാത്രമല്ല രക്ഷിതാക്കളെ ഉള്ളില്‍ വിളിക്കാമെന്നും ചികിത്സാ മുറിയുടെ വാതില്‍ എപ്പോഴും തുറന്നിടുമെന്നും പറയുന്നു.
ഈ പ്രചാരണത്തിനുശേഷം തെറാപ്പി സെന്ററുകള്‍ മാതാപിതാക്കളെ മുറിയ്ക്കുള്ളില്‍ പ്രവേശിപ്പിക്കാന്‍ തുടങ്ങി. ക്ലിനിക്കുകള്‍ക്ക് റെഗുലേറ്ററി മെക്കാനിസം വേണമെന്നും ‘ടിഇസി’ സംസ്ഥാന മനുഷ്യാവകാശ കമ്മീഷനും കേരള സ്റ്റേറ്റ് കമ്മീഷന്‍ ഫോര്‍ പ്രൊട്ടക്ഷന്‍ ഓഫ് ചൈല്‍ഡ് റൈറ്റ്‌സിനും അപേക്ഷ നല്‍കിയിട്ടുണ്ട്.


സീമ ലാല്‍ ആണ് ടിഇസിയുടെ കോര്‍ഡിനേറ്റര്‍. ഈ സംരംഭം എന്തുകൊണ്ടും സ്വാഗതാര്‍ഹമാണ്. സ്ത്രീകള്‍ സര്‍വംസഹകളല്ല എന്നാണ് സീമ പ്രഖ്യാപിക്കുന്നത്. അനീതിക്കെതിരെയും പീഡനത്തിനെതിരെയും ശബ്ദമുയര്‍ത്താന്‍ സ്ത്രീകള്‍ ധൈര്യപ്പെടണം. തങ്ങളുടെ കുട്ടികള്‍ക്ക് തെറാപ്പി നഷ്ടമാകുമോ എന്ന ഭയം പലരെയും നിശ്ശബ്ദരാക്കുന്നു. പക്ഷേ ‘ടിഇസി’ ‘നാം ഒരുമിച്ച്’ എന്നുപറയുമ്പോള്‍ ഭയത്തിന് സ്ഥാനമെവിടെ? സ്ത്രീകളില്‍ ഇന്ന് ഇല്ലാത്തത് പ്രതികരണശേഷിയാണ്. തങ്ങളുടെ കുട്ടിയുടെ രക്ഷയ്ക്കായെങ്കിലും ഇവര്‍ ഇപ്പോള്‍ ഒത്തൊരുമിച്ച് പ്രതികരിക്കാന്‍ തയ്യാറായി മുന്നോട്ടുവരുന്നത് സ്വാഗതാര്‍ഹം തന്നെയാണ്. എന്നാല്‍ പ്രതികരണങ്ങള്‍ ഫേസ്ബുക്കില്‍ ഒതുക്കരുത്.


സ്‌പെഷ്യല്‍ സ്‌കൂളുകളില്‍ മാത്രമല്ല, സാധാരണ സ്‌കൂളുകളിലും ബാലലൈംഗിക പീഡനം കുറയണമെങ്കില്‍ രക്ഷിതാക്കള്‍ സംഘടിതരായി മുന്നോട്ട് വരണമെന്നാണ് ക്ലിനിക്കല്‍ സൈക്കോളജിസ്റ്റായ ഡോ.ശാരദാ രാജീവിന്റെ അഭിപ്രായം.

e-mail: leelamenon2001@yahoo.com

Source : http://www.janmabhumidaily.com/news350464#ixzz3sWZK9P8G

TWC suggestions included in Kerala's Draft Child Policy !

#KOCHI_Together_We_Can

Points 34 & 35 of the Draft Child Policy by The Kerala Social Justice Department incorporated what we asked for through Petition. Now waiting for the implementation! 

The Draft is #Open_to_Public for feedback @ http://www.swd.kerala.gov.in/

34. Almost all differently-abled children require Speech Therapy (ST),Occupational Therapy (OT) and Behaviour Therapy (BT) while many require Physiotherapy too. Today, the facilities available for providing these services through Government agencies are very few, and mainly in the urban area; hence,there is a mushrooming of agencies in the private sector offering therapy at exorbitant costs which very few can afford and whose quality of services is, on occasion, suspect. There are no prescribed standards by which parents can make an assessment regarding the quality of services offered by these service providers, which, besides the lack of transparency, sometimes results in disastrous consequences for the child. 

35. Hence, there is an urgent need to regulate this sector and provide proper guidance and support to parents to manage the training and mainstreaming of these children with intellectual disabilities, whose numbers in percentage terms vis-a-vis the total number of children has increased. Since socializing is an important aspect of their training, there has to be a clear policy about how children with different categories of disabilities ought to be handled; the manner and extent of their integration with regular schooling (taking into account the varying nature and intensity of their disabilities); the syllabus to be prescribed in such cases; examine how children with exceptional capabilities can be nurtured within the education system; how to involve parents, who are important stake holders, in their education; and above all, to teach life skills to these children with special needs so that they become as self- reliant as their disabilities will permit them to be. It is also essential to make access to affordable and quality therapy services available to all children in need of these services.

Parents of special children open up on therapy centres

21-May-2015

Sudha Nambudiri

KOCHI : Emboldened by the district collector's decision to take action against illegal therapy centres for special children, parents have started posting horror stories of their personal experience on the 'Together We Can' Facebook page.

Parents, who were earlier scared to divulge any details, have started discussing issues and experiences on the page.

Writes Padma Pillai on her visit to a therapy centre along with other parents: "Run by an Occupational Therapist man and a lady who has previous experience, the OT man also claims he has found a cure for autism using acupuncture (without needles!). He started off by saying, they do allow parents inside and keep the door of the therapy room always open (ha!!) and that parents are welcome to walk in any time. The first 3 months they don't allow parents because that is the time for the therapist to get to know the child!"

Another parent Preetha Anoop writes about her son who fractured his hand during occupational therapy: "I saw him lying unconscious and doctor explained about the pain killer that he had administered as he was crying out of pain. I have hardly seen him expressing pain as reduced pain sensitivity is a common feature of children with Autism. The pain should have been excruciating and above normal thresholds for him to actually feel it and express it.

"Shortly after, the doctor informed us that the X-ray results indicated that his hands were broken into two pieces. He asked us to probe into the situation and find out exactly how this has happened. He advised us immediate surgery. Autistic children cannot understand anything unless it's being communicated by someone who have won their trust. They have communication impairment and cannot comprehend easily. When we asked the therapist, he fumbled something about how he only applied little pressure..."

http://timesofindia.indiatimes.com/city/kochi/Parents-of-special-children-open-up-on-therapy-centres/articleshow/47369839.cms

Action against illegal therapy centres

20-May-2015

Sudha Nambudiri

KOCHI: District collector M G Rajamanickam on Tuesday has decided to take action against illegal therapy centres for special children suffering from autism and cerebral palsy under Section 133 of the CrPC.

Many such centres are being run in the city without necessary registration and documents from certified agencies for treating children with special needs.

The decision follows a complaint given by 'Together We Can' (TWC), a forum of parents of autistic children, pointing to the lack of a regulatory body to monitor the functioning of these centres. At a meeting of district officials of health, education and social justice departments, chaired by the collector on Tuesday, the officials said that these private institutions do not come under their purview.

"Since these 'special' children cannot express their problems, we would like to draft a list of common guidelines for such centres. We also want to ensure that these centres are properly registered with the authorized agency," the collector told TOI after the meeting.

He promised to conduct a survey of these centres in the city. "We will conduct a seminar in which all therapy centres, government officials, experts and parents will be invited. We will sort out the issues after listening to all parties and draft a common set of guidelines in the best interests of children," he said. The TWC along with the child welfare committee (CWC) chairperson, Padmaja Nair, had given a petition to the collector, complaining about negligence and apathy of private centres that provide speech and language therapy, occupational therapy, special education services, psychological counselling and other services, imperative for the progress of children with neurological disabilities.

As of now, there is no regulatory body that checks the functioning of such centres whose services are crucial for the development of children with disabilities. "However, we found during interactions with parents and visits to therapy centres that extreme cases of negligence were rampant, mainly because these centres were not accountable to anyone. Unfortunately, parents are taken into confidence by fake promises of cure," the petition said.

During therapy sessions, parents are not allowed inside and children, who cannot communicate, are under the mercy of therapists. There is no way to monitor if an abuse happens inside closed doors. Ignorance and lack of awareness of parents combined with the inability of children to communicate make the situation worse. Most of them are not registered with the Rehabilitation Council of India as required.

"In addition, a significant number of parents have not been given an IEP (Individualized education programme) and are not trained on 'how' to handle their child at home. Most parents said that they were not given a review of the progress made by heir wards. Children with disabilities are the most vulnerable group and easy prey for abuse of any kind," the petition said.

http://timesofindia.indiatimes.com/city/kochi/Action-against-illegal-therapy-centres/articleshow/47354738.cms

MEDIA RELEASE : Safety of children with developmental disabilities in private therapy centres

MEDIA RELEASE

SAFETYof children with autism
& other developmental disabilities
in private therapy centres.

Children with various developmental disabilities are unable to communicate and have various anxiety issues and sensory disorders. Recently, there have been a spate of issues at Private therapy centres where autistic children were restrained with binds to a chair or were beaten, pinched or otherwise terrorized. There was an incident where a child’s arm had a fracture during Occupational therapy by an unqualified therapist. 

In all one on one therapies involving a minor who has problems with communication, it is vital that the parent or primary caregiver accompanies the child at all times. The safety of the child is paramount and presence of a parent can prevent untoward incidences, abuse and psychological trauma. It can also facilitate a better learning environment for these children, who already struggle because of their disability. In Kochi, majority of the therapy centres do not allow parents to accompany the child inside the therapy room. 

Together We Can (TWC)  is an advocacy group started by parents in the wake of such incidents, with the active support of a few professionals who work in this area, journalists and child rights advocates. 

This group had submitted petitions to Child Welfare Commission, Kerala State Commission for Protection of Child Rights (KeSCPCR) and other such bodies, requesting for a directive which ensures the child’s safety within a therapy room. On 16th of May, a petition was submitted to the Honourable District Collector, MR. M G Rajamanickam IAS, with the help of the Chairman of the child welfare commission.

With remarkable level of understanding and empathy to the distress caused to the affected children and their families, the Collector called for a meeting of representatives of Together We Can and key representatives from the Social Justice department on the 19th. He carefully understood the issues and directed his office to issue a show cause notice to therapy centres, special schools and other such rehabilitation centres. He also directed the social justice department to conduct enquiries into these centres and to submit a report about how they can all be brought under a single regulatory umbrella.

Timely action by the Collector, who is the final authority for the welfare of the disabled under the National Trust Act, has given hope to the parents of children with neurological and developmental disabilities.

What Parents Need To Know : Autism and other neurological disabilities #TogetherWeCan

Therapy centres for special kids take ‘inclusive’ route

28-Apr-2015

Sudha Nambudiri

KOCHI: Rehabilitation and therapy centres for special children have started allowing parents to accompany their wards during sessions following the TOI report on how they are kept away from such sessions.

Helpless parents, who had formed a group 'Together We Can', reported that therapy centres have started to respond to their requests. "Today, after my child completed his session with the therapist, I was called for feedback and the therapist said that I could sit with my child during the session," said an elated mother who didn't want to be named.

Another parent said that a centre's director said that he was helpless as therapists refused to allow parents to sit with children during sessions. "He said a senior therapist had threatened to quit if parents were allowed to watch," the parent said.

Meanwhile, the group, 'Together We Can', will send a petition to the State Human Rights Commission (SHRC) and Kerala State Commission for Protection of Child Rights (KSCPCR), demanding a regulatory mechanism to ensure that special children are treated well. Psychologist and special educator Seema Lal, the coordinator of the group, said that several centres had called to say that they would try and accommodate parents during sessions. "We will mail all centres and ask therapists to devote an hour to train parents. Centres are responding as they have realized that parents are discussing issues together and raising common concerns," she said.

Parents pay Rs 200 to Rs 500 per session for their children. Each child gets about two sessions a week because of the huge demand for therapists.

"We will definitely look into the issue. It is unfortunate that till date no such report has come to our attention. It is indeed a cause for concern if parents are not allowed to watch therapy sessions held with their wards," said S Jayakesan, registrar, KSCPCR.

http://timesofindia.indiatimes.com/city/kochi/Therapy-centres-for-special-kids-take-inclusive-route/articleshow/47076592.cms

Group raises concerns of special children

24-Apr-2015

Sudha Nambudiri

KOCHI: Frustrated, harassed and helpless parents of children diagnosed with specific disabilities needing therapeutic intervention have formed a group called 'Together We Can' in Kochi.

The group aims to ensure safe and healthy therapy practices in centres dealing with children who cannot speak or react.

What triggered the formation of the group were incidents such as a child's arm being broken during an occupational therapy session and parents being denied access to therapy sessions, etc.

Most parents do not complaint out of fear that their children may be denied therapy sessions. "In most therapy centres, parents sit outside tensed, wondering whether their child is crying or learning something. We spend most of our time with the child and a session is about 45 minutes. So ideally, we should be taught what to do when the child gets hyper, when he is not listening, etc. We need to train him. But since we are sitting outside, we do not know what to do," says a parent of a five-year-old who is undergoing therapy.

But therapists feel that children do not respond well in the presence of parent. "But why not have a glass enclosure so that we can watch what is being taught. After all, we have to be trained to handle the child," says another parent of a seven-year-old.

Padma Pillai, who has a 10-year-old son taking therapy sessions, says that there is no transparency in the system. "Half of the professionals are not trained psychologists, therapists. In some centres, they are good. But with so many children, we get only two sessions a week for the child. As parents, we should understand how to handle the child." She says that her child had a traumatic experience in a therapy centre and it took almost a year for him to get over the experience. "Now, I have left my career to devote to all his needs. But in Kochi, there is hardly any centre where the therapist allow parents to watch the session," she says.

Autistic and other special children are poor communicators. So, they cannot communicate what is being taught and trained.

Psychologist and special educator Seema Lal, who trains parents, says the methodology followed by many centres is not correct. "Ideally, if a child is sitting in a session, parents should also watch what's happening as they have to learn. Autistic children have varying degrees of disability. The child may not respond well at a therapy session. But if he has to learn, he has to be trained continuously at home. For that, the parents have to be trained," she says.

http://timesofindia.indiatimes.com/city/kochi/Group-raises-concerns-of-special-children/articleshow/47034038.cms