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ADARSH CHARITABLE TRUST, CARING FOR CHILDREN WITH CHALLENGES

Introduction:

Finding that
  • Disability among children is more widely prevalent than normally realized.
  • Rehabilitation is possible to such an extent as to enable a disabled child to lead a life of dignity and independence in adulthood, in a vast majority of cases.
  • It is necessary to identify each disability specifically for appropriate therapy and training to be imparted for proper rehabilitation,

An institute for habilitation of children with challenges i.e. those with brain damage, having symptoms of Cerebral Palsy and other sensory-motor childhood developmental disorders, was started at Tripunithura at 1998,under the name of Adarsh, by a Charitable Trust registered under the same name. Now there are 140. children with Cerebral palsy and Mutiple Disabilties. Based on the experience gained, and finding the need, subsequently, other disabilities were also provided for children affected by other challenges ,in separate sections, as follows:



July 2003 : Autism, now 40 children + 20 mutiple disabilities .
Feb 2008 : Learning Problems, now 26 children.
July 2008 : Downs Syndrome, now 10 Children.

Today the  Rehabilitation centre institution has, on its rolls, over 240 children belonging to all religions and communities and of different financial background.



VISION

To become an institution par excellence, providing comprehensive habilitation measures and pioneering efforts for enriching the lives of challenged individuals.



MISSION

To help every challenged child by

  • Reaching medical and therapeutic assistance
  • Imparting academic training appropriate to specific needs
  • Equipping with appropriate Vocational skills
  • Creating necessary social and physical support infrastructure that empowers the child to lead a life of independence and dignity in adulthood.



MOTTO

A man is never as tall as when he kneels to help a child



Objectives

  • For helping physically handicapped and mentally retarded persons
  • To rehabilitate patients with Cerebral Palsy and persons with other disabilities
  • To give medical assistance and relief to those who are poor and have become mentally and physically retarded through accidents or other calamities
  • To establish and/or construct, run and aid institutions, medical relief centres for this purpose
  • To promote research in the field of Community Based Rehabilitation programmes



Centre Based Activities

  • Habilitation centre for children with Cerebral Palsy Cerebral Palsy is a Neuro-Motor Developmental Disorder, which happens due to the damage to the growing brain at or around the time of birth. In a few cases, the damage can occur after birth, in the first few years. Children with Cerebral Palsy have generally several associated medical problems including Epilepsy, Mental Retardation, Hearing problem, Visual problems etc. There is no cure for Cerebral Palsy. But those affected can be made independent, in varying degrees, through proper habilitation measures.
  • Habilitation Centre for children with Autism Spectrum Disorders It is a severely incapacitating lifelong developmental disorder, causing impairment or disturbance in three main areas- social skills, communicative (verbal as well as non-verbal) skills and in their repetitive and “restricted” behavior patterns like abnormal responses to sensations. Any one or more of the senses may be affected. This severe neurological disorder typically appears during the first 3 years of life.
  • Habilitation Centre for Children with Down Syndrome Down syndrome (DS) is a condition in which extra genetic material causes delays in the way a child develops, and often leads to mental retardation, physical and cognitive delays. It affects 1 in every 800 babies born. Though Down syndrome can not be prevented, it can be detected before birth. The health problems that go along with Down syndrome can be treated.
  • Habilitation centre for children with Learning Disorders Learning disabilities are problems that affect the brain's ability to receive, process, analyze, or store information. These problems can make it difficult for a student to learn as quickly as someone who is not affected by learning disabilities. There are many kinds of learning disabilities. Children with Learning disorders make it difficult for a student to read, write, spell, or solve problems in arithmetic


Various rehabilitation measures undertaken by Adarsh rehabilitation centre are:

  • Early Intervention-Infant sensory and motor stimulation
  • Neuro Developmental Therapy
  • Sensory Integration Therapy
  • Developmental Physiotherapy
  • Clinical Physiotherapy
  • Training in Activities of Daily Life
  • Visual Stimulation
  • Speech Therapy
  • Language and Communication training -Alternative Augmentative
  • Communication
  • Behavioural therapy
  • Occupational therapy
  • Hydrotherapy
  • Special Education
  • Nutrition and General health care supports
  • Academic training under NIOS syllabus

Child Development Evaluation Intervention and Research Centre ( CDEIRC) Evaluation or Assessment of Developmental milestones of babies with potential risk of any disabilities or babies born with any type of disability is the primary step before starting rehabilitation. Based on such an Evaluation or Assessment alone can meaningful goals be set and appropriate different therapy programmes implemented. Adarsh’ centre (CDEIRC) undertakes such evaluation of about 15 children every month with the help of a Developmental paediatrician and Clinical Psychologist and arranges for necessary intervention.



Community Based Activities

  • In August 2005, “Risk Baby Unit” was set up at two eminent hospitals in Ernakulam, namely Ernakulam Medical Centre & Lakshmi Hospital, to identify latent problems in babies born prematurely and /or with low birth weight, to counsel the parents about the need for extreme care , the precise steps to be taken , administer therapy etc. for these children. Now a 3rd hospital is also covered –PVS hospital in Ernakulam. This unit, headed by a Developmental Therapist and working in close coordination with the neonatological units in these hospitals examines about 45 new born babies every month, and administers therapy and gets them medical attention through doctors. Such children are referred to rehabilitation centres appropriate to their need.
  • The Home Based Rehabilitation Scheme. 2 teams consisting of a Physiotherapist, Special Educator and helper in each team and a Social Worker to coordinate the activities of both teams, visit about 70 children, each child about twice a week, administer the required therapy and counseling. These are children, who, for various reasons are not able to attend even a nearby Rehabilitation Centre.



Future programmes and help needed

Projects

To fulfill our objectives, we would like to expand our area of activities to cover more children with challenges. Some of these are:


  • Taking into consideration the needs of the community, we plan to gradually increase the scope of the Home Based Rehabilitation Project to cover the whole of Ernakulam District. The cost of each team is , a one time investment of Rs. 3. lakhs ($6000)for a van and an annual recurring cost of Rs 300000/-($6,000) towards staff costs.
  • a. Hydrotherapy is a very good form of exercise for children with Cerebral Palsy & Autism. Now we take a few children to a pool, in the city , about 15 kms away. To cover more children we need to have a pool in our centre. The cost has been estimated at Rs. 10 lakhs.($22000.)
  • a. Majority of our children are affected by Locomotor and sensory problems, which prevent them from vigorous vocation work. So we need to develop a good Vocational Training Centre , to train our children in acquiring some vocational skills which will help them in future to find a vocation in life.The Cost is estimated at Rs. 10 lakhs ($22000.)
  • Another project is to procure 2 school vans. For a Rehabilitation centre, transportation facility is a big boon, for children and parents alike . 50% of the children, use this facility. We run 6 vehicles, 4 of our own and another2 on hire. The hire charges compare very unfavourably with the cost of running our own vehicle and therefore, we would like to purchase 2 more vans. The cost for each van is Rs. 7.5 lakhs ($ 16000)
Recurring help

Apart from these projects, we need financial help also for running the rehabilitation Centre efficiently. This is necessary as Government Sponsoring has so far been NIL from the Government of India and only about 60% from the Government of Kerala. The various schemes for such help are:

  • Sponsoring a child for a month - Rs. 1000 ($20-25)
  • Sponsoring transport for a child and their parent - Rs. 800 ($12-16)
  • Donating to the Medical Fund- Rs. 5000 ( $100-120)
Profile on some children of Adarsh:


DHANRAJ

He joined Adarsh AT 7 months, able to hold his head well only partially, with no other milestones achieved whereas , he should have attained independent sitting balance. Dhanraj was diagnosed as a child with brain related developmental delay. His mother used to bring him to our Rehablitation centre everyday without any break for developmental therapy, overcoming her severe depression at the condition of her son born after 7 years of marriage and putting up with all the problems of carrying him in a public line bus. Slowly, with the empathetic support and counseling from all the staff members and parents of other children, she got over her sense of gloom and became an active member of the Adarsh family. Being a premature baby born in the 7th mont of pregnancy, Dhanraj was very weak and under nourished. In spite of these problems, Dhanraj responded well to the early developmental training. He started sitting and standing with support, then without support etc. and on the 23rd of October 2006, Dhanraj took his first step in life, a memorable day for the entire Adarsh family. After that, his overall growth and development were rapid and he was able to attend a normal school in 2007. Now he studies in a normal mainstream school in 2 level.




ARATHY RAJ

Arathy Raj aged 8 yrs with delayed milestones, diagnosed with Autism Spectrum Disorder, was admitted to Adarsh on 6th June 2005. At the time of admission the child had no eye contact, was hyperactive and restless. The child was non verbal with poor comprehension and socialization. The child could not initiate motor activities and could not indicate her needs. Now after structure behavioral modification therapy for 3 years, the child’s eye contact has improved and is able to understand and follow instructions. Her socialization skills have improved remarkably. Now she is undergoing 2nd level in academic education. She has an ear for music and enjoys dance.




SHIFA FATHIMA

Shifa is a charming girl affected by Down syndrome. Joining Adarsh in 2008 at the age of 4, when she had speech problems, hyperactivity and limitations in Activities of Daily Living and some degree of mental retardation, common in children with Down Syndrome. As she started her training early, she could achieve very good improvement in her over all development. Now she is able to speak well, hyperactivity is reduced and she is able to attend to her activities of daily living independently. Shifa can be trained academically because of her ability for concentration, quick response and good thinking ability. She is a very bright child and we hope she will be improve further.




LIYA MOL

Liya mol is a 5 yr old girl affected by West syndrome. It is a severe epilepsy condition associated with delay in developmental milestones. Liya mol joined Adarsh in 2009. Liyamol had not even achieved head control at the time of admission. All the delays in development were mainly due to her severe epilepsy. Later, with the help of an advanced medicine called SABRIN (VIGABATRIN) (prescribed by our Developmental Paediatrician ), her epilepsy got under control . After that, her overall development was very good and fast. Now she is able to walk independently. Her speech has also improved a lot. She can attend to all her needs of daily life independently. She has also joined a regular play school for 3 days a week as preparation to pursue her studies in a normal school from the next academic year.





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