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

Safety of children with autism and other disabilities

16-05-15 

Mr. M.G Rajamanickam, IAS 

District Collector 

Collectorate, Kakkanad

Ernakulam- 682030

Kerala.

Respected Sir, 

Subject : Safety of children with autism and other disabilities 

In the wake of several unhealthy practices reported by parents who seek therapeutic help through private therapy centres /hospitals in Ernakulam District, for their children diagnosed with neurological disabilities, the initiative Together We Can (TWC) began.

This is to bring to your notice the extent of the problem and the need for timely intervention. These parents are dependent on the private therapy centres for speech and language therapy, occupational therapy, special education services, psychological counselling and other services that are imperative to the progress of their children with neurological disabilities. 

As of now there is no regulatory body that looks into the functioning of such centres whose services are crucial to the development of children with disabilities so as to help them function inclusively in mainstream schools. 

However we have come to know through interactions with several parents and visits to therapy centres that extreme cases of negligence and apathy is rampant mainly because there is nobody these centres are answerable or accountable to other than parents. 

Unfortunately the parents who are still in the stage of shock and denial of accepting their child’s condition are taken into confidence by fake promises of “cure”.  In an extreme case a 5 year old child diagnosed with autism broke his arm during therapy and the centre has neither given a convincing reply nor are they willing to changes ways. 

It is of great concern that during the therapy session the parents are made to wait outside while the child who cannot communicate is under the mercy of a trained adult who is expected to teach.  There is nobody to monitor even if an abuse of any nature happens inside the closed door.  Ignorance and lack of awareness on part of the parent and inability of the child to communicate make them live at the mercy of anything and everything that is told to and done to them inside the closed rooms. 

In addition, a significant number of parents voiced that they are not being given an IEP (Individualised education program), they are not given a written home program and are not trained on ‘how’ to handle their child at home. Most parents voiced that they are not given a review of progress. Children with disabilities are the most vulnerable group and easy prey to abuse of any kind. Sir, we request your active support in creating an ethical, transparent, accountable, inclusive, safe and healthy therapy practices within the Ernakulam District. 

We are attaching herewith our petition sent to the SCPRC – State Commission for Protection of Child Rights and the District Child Welfare Committee. 

Thank you so much for your time and patience; look forward to your dynamic support and timely action to prevent any further unfortunate events from happening. 

Sincerely,

All @ Together We Can 

PETITION : District Child Welfare Committee, Ernakulam

QUESTIONNAIRE : Safe and healthy therapy practices

#KOCHI_TogetherWeCan

....towards safe and healthy therapy practices...

Dear Parent,

In the wake of far too many episodes of unhealthy practices within several (not all) private run therapy centers for children with special needs in Kochi, a couple of frustrated parents/professionals & other like-minded individuals started a group called “Together We Can”. The objective of this group is to initiate a campaign in the City (Kochi) & soon state-wide & nationwide towards creating more awareness about rights & duties of -:

1. Children diagnosed with specific disabilities needing therapeutic intervention

2. Parents of children with diagnosed disabilities taking therapeutic services in private centers

3. Professionals working in the field

4. General Public

Phase# 1 of the campaign focussed on spreading awareness about the rights of Parents of children taken to Early Intervention programs to private centres & whose children are not in a position to communicate on their own what happens during the therapy sessions. By spreading this campaign by word of mouth, social media and all other feasible methods we hope to raise the interest of the public and other stakeholders in this matter.

We also advocate the setting up of a qualified external agency that comprises all the stakeholders to monitor such private therapy centres.

Phase #2 of the campaign would entail the parents to fill in the below questionnaire. This would then be tabulated to identify the extent of rights violation. The finding would then be sent to the State Human Rights Commission. Please read though the entire questionnaire before starting to fill.

Consent and Willingness to participate in this Campaign: Circle you option from 1 or 2

1. I do support the objective of #KOCHI_togetherwecan campaign and agree that rights of parents must be safeguarded. I am willing to fill share and fill in all my personal experiences and reveal mine and my child’s identity as I understand it is for the larger good and my support is significant.
2. I do support the objective of #KOCHI_togetherwecan campaign and agree that such rights of parents must be safeguarded. However I am willing to share only a few personal details and experiences because I fear it will affect the future of my child as I still feel very dependent on therapist for helping my child become independent. I fear my sharing my honest experiences with therapy centres will jeopardize my child seeking their help.

Name and address : ______________________________________________________________________________________

Age and Diagnosis of your Child: ___________________________________________________________________________

Number of years/months you have been seeking therapeutic help for my child: _______________

#KOCHI_TogetherWeCan

....towards safe and healthy therapy practices...

1. Have you been a participant of the one to one session between the therapist & your child at the Center. If not,  were you able to monitor what was ongoing during session through a cctv or one way screen -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

2. Have you been explained what to expect realistically -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

3. Have you been involved while formulating the IEP & made aware of progress. - : Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

4. Have you been explained what is being taught, why and how, elaborating on the goals & methods being used-: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

5. Have you been recognized as a resource person being serviced & has the centre initiated coordinated efforts with other centers/therapists with who your child undergoes therapy. -:  Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

6. Have you been trained to handle a home program -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

#KOCHI_TogetherWeCan

....towards safe and healthy therapy practices...

7. To be shown the specific written plan for the 45 minute to one hour session that is given -: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

8. Has your child been always handled by trained professionals & not by any other untrained staff in the center-: Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

9. Has the centre shown in writing their best practice policies :- Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

10. Have you ever been denied or threatened to be denied further therapy services if the parent questions when any of the above rights are violated. Yes /No

Comments if any: ______________________________________________________________________________________________________________________________________________________________________________________________

THANK YOU SO MUCH FOR YOU PARTICIPATION ☺                              

PETITION : SCPCR OP No 2459/2015

BEFORE THE HON’BLE STATE COMMISSION FOR THE PROTECTION OF CHILD RIGHTS

Petition No.                                 of   2015

PETITIONER:

Seema  Lal,

C/o. #KOCHI_TogetherWeCan

Kochi – 682 020.

Vs.

RESPONDENT:

State of Kerala, Represented by the Principal Secretary Ministry  of Social

Welfare,  Ground Floor, Secretariat,  Statue, Trivandrum.

COMPLAINANT

1. The Petitioner submits that they are Indian inhabitants residing and domiciled in Ernakulam. The petitioner is a Psychologist and Special Educator and has been working with children with neurological disability. She has been extensively working with parents of children with neurological disabilities to train them. The Petitioner is approaching this forum in light of certain unhealthy practices taking place in the therapy sessions for children with neurological disabilities in the Private and  Therapy centers.

2. The Petitioner submits that she along with some parents of neurological disability formed a forum known as   “Together We Can”. The object was to promote awareness about the rights and duties of parents and professionals working with children with disabilities so as to help them function effectively and inclusively in mainstream School.

3. The Petitioner submits that in the case of a child with neurological disability, before they reach the phase of inclusion every child with any clinically diagnosed disability goes through a period of segregated learning or therapy through therapy centres functioning independently or associated with hospitals. It has been seen that the quality of such

segregated exclusive therapy or teaching provided by special educators, speech and language therapists, occupational therapist, physiotherapist and the likes are crucial to help the child move slowly and gradually with confidence into a mainstream inclusive school.

4. The Petitioner submits that since  the primary objective of mainstreams school are academic in nature, it is essential that the parents of children with disabilities are trained well enough to help their children function in a group setting as is the case in a mainstream school. It is submitted that since the  regular school teachers are not special educator, it becomes mandatory that the child who is to be “included” is ready for inclusive education. And teaching this readiness is the goal that is to be achieved by the therapy centres while providing early intervention.  It is submitted that to ensure this the primary care giver most often the parent should have a clear understanding of both the strengths and weakness of the child and should serve as a resource person to the mainstream school to help their children settle well. If the parent is an equal partner as the teacher the children with disability find the shift from home to school easier.

5. The Petitioner submits that unfortunately the Practice is totally different. It has been observed that though inclusive education was introduced in the general academic milieu, the children with neurological disabilities are not benefitting from the program as the parent is unable to guide or support a home program and mainstream schools forced to practice an “integrated” model.

6. The Petitioner submits that many school counselors and the one or two special educator that a mainstream school might have,  end up functioning as therapists again,   practicing an integrated model. An integrated model is where the children with intellectual disabilities are still considered as “special students” who receive remedying of subject and continue to receive professional, specialist expertise, and formal support from the school. This goes against the concept of Inclusion. So while the children are ‘school going’ they are not really ‘attending school’.
   This happens mainly due to a large gap in training given to parents and children during the early intervention programs in the therapy centres. Even children who have had extensive intense therapy session during their early years of life are not able to settle in a inclusive education model because the parents have not been able to follow a consistent

home program that makes the shift from a one to one therapy model to a group teaching at school very difficult for their children.

7.  The Petitioner submits that the reason for this event was mainly because there was no inclusive participation of parents in therapy centers where children with disabilities were being given therapy towards inclusion. The Parents were at a loss and  had no clear guidance or expectations about their children were in the therapy sessions.  Parents were not a participant of the “one to one session” between the therapist & the child at the centre. CCTV or a one way screen through which the parent could observe and learn what is going on is not available. As a result the therapist continues to hold the exclusive hand in training the child and parents do not know how exactly to take it forward at home.

8. It is further submitted that most centres would not explain to the parents what to expect realistically from their child with neurological disability due to which there are either very high expectations or at times very low on the part of the parent and this a barrier for effective inclusion and mainstreaming.

9. The Petitioner submits that the parents were not involved while formulating the IEP (Individualized Education Program) & are most often not made aware of progress. The goals remain the same for months and sometimes years and the reasons for no progress is cited as difficulty of the child where in reality it is the therapist’s lack of knowledge in setting functionally achievable realistic goals. The parents are not explained what is being taught, why and how, elaborating on the goals & methods being used. This makes it almost impossible for a parent to follow a good routine at home incorporating all the therapy goals. As a result most of what is taught in the centre is unlearnt at home due to sheer ignorance on the part of the parent.

10. Further, Parents are not recognized as a resource persons. It is the parent who has the maximum information about a child than any therapist or for that matter any other individual but their difficulties at home at not taken into consideration while prioritizing of goals at the centres. Centres do not initiate coordinated efforts with other centres or even within the same centre in cases where the child attends several therapies.

11. It was further seen that there are no written guidelines given for a home program. All children with considerable disabilities especially during their early intervention phase need at least 20 hours of significant one to one therapy. It is imperative that parents be trained to handle it and when it does not happen a lot of crucial learning time of the child is wasted. They are not shown the specific written plan for the 45 minute to one hour session that is given by the therapist. Like in mainstream education where every teacher is expected to draw out a lesson plan for each period there is no such thing done when it comes to special education or other therapies such as speech and language or occupational therapy. It is left to the mood of the child that day and precisely due to this reason children find it difficult to settle in mainstream schools as there is a fixed time table and routine. We have very few therapists who are trained to deal with behavioural difficulties in children.

12. Many centres functioned merely like day care centres were parents have found their children being handled by the cleaners or other support staff of the centre. This was done as a result of shortage of staff but the parents were left unaware for long as they are not permitted to enter.  Most centres do not give any guidelines or rules or makes any written commitment of safe and healthy practices. It is submitted that instances of denial of further therapy services when they questioned the violation of their rights.

13. The Petitioner submits that the first 10 years of life is the most crucial foundation years in the child’s life when a lot of disabilities and abilities if handled with effective therapy and training in an inclusive manner (including the parents and all stakeholders) can go a long way to ensure the children a healthy independent adulthood.   

14. It is submitted that lack of external agencies
    monitoring the functioning of such therapy centres are a serious disadvantage to the children with neurological disabilities and harms them in the effective future development It is submitted that due to this lack even physical abuse of children happening with closed doors go unnoticed and without any evidence. The parent not being part of the therapy sessions are not aware of what is happening within the closed

rooms.  Lack of monitoring authorities lead to carrying on of unhealthy practices and actions without any supervision or control.

15. It is submitted that we have a more open, inclusive, transparent, ethical, accountable, responsible, safe and healthy practices within therapy centres.

It is under these circumstances the Petitioner is approaching this Hon’ble commission to :

1. To conduct an enquiry into the functioning of therapy centers in Ernakulam for children with neurological disability;

2. Issue directions to the state government to ensure the transparency and accountability in the functioning of the  therapy centers;

3. Issue directions for the development of a code of conduct in therapy centers and ensure the participation of parents in the therapy sessions

4. Any other orders

All that is stated above are true to the Best of my knowledge and belief

Dated this the 29th day of April, 2015.

  Petitioner

                                                                                   Seema Lal

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