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Early Intervention Programme: Lessons from the National Institute of Speech and Hearing, Trivandrum, Kerala

By Ankur Madan

Importance of Early Intervention

Increasing awareness about the importance of the early years of a child’s life (0-6 years) in recent years has led to several proactive measures and interventions to ensure the provision of healthy and stimulating environments for young children. Research in the fields of neuroscience and child development provide compelling evidence to prove that neural connections formed at a young age and experiences in the early years have a lasting impact on the later learning and development of children. Measuring the developmental milestones of children in different domains, such as physical, cognitive, social, emotional and communication, allows mapping of capabilities that children are expected to attain during their critical growing years. However, many children do not attain these capabilities at the same time as their counterparts. Intersecting factors like poverty, malnutrition, poor hygiene, inheritance, ignorance and disease can cause permanent and irreversible damage to different parts of the body leading to impairment and consequent disability. Due to lack of awareness, poor access to facilities and the absence of appropriate resources at early years’ centres, such developmental delays often remain undetected. Hence, children with impairments are deprived of a nurturing and stimulating environment, critical for their growth and development during the crucial early years of their lives.

According to the 2011 Census data, 7.01 % of children in the age group of 0-6 years in India have a disability, inborn or acquired. In this regard, early identification and intervention services can play a crucial role in prevention as well as remediation of the developmental delays that occur in young children. Early intervention broadly refers to the provision of services to infants, toddlers and young children who are considered vulnerable for reasons of disability or risk of disability. Liberty (2000) describes early intervention as, ‘…a philosophy of providing specialized services to children with special needs during their developmental years, with the aim of ameliorating the effects of biological and other factors that can affect developmental outcomes’ (p.31). Early intervention not only ensures that a child with or at risk of a developmental delay is provided with specialized support at the time of maximum readiness to learn and develop, but it can also become a very significant source of support for families with exceptional children. As parents and siblings learn to cope with the stress of raising a child with a disability, early intervention can create a support system that is a source of information, skills and a means of bringing about attitudinal change and acceptance in society towards children with disabilities. The Early Intervention Programme (EIP) for children with hearing impairment offered by the National Institute of Speech and Hearing (NISH), Trivandrum is one such programme, the origin and details of which are discussed in this article.

National Institute of Speech and Hearing

Established in 1997, the National Institute of Speech and Hearing (NISH) in Thiruvananthapuram is an autonomous institution under the Social Justice Department, Government of Kerala and is initiative of Mr G Vijaya Raghavan (GVR), its Founding Director. In a senior management position with the Government of Kerala at the time, GVR proposed the idea of setting up a centre for those with hearing impairment to the Social Justice Department and the Chief Minister of Kerala in 1996. He shared with them the vision of a centre that could acquire the stature of a pioneering institution in the country, providing facilities that were not easily available back then.

GVR’s motivation and vision to do so came from his personal experience as a parent to twin daughters born with hearing impairment. GVR related how he and his wife had struggled to find even the basic facilities for identification of the impairment in his toddler daughters and the difficulties he faced later in raising funds for a small school that he had established for deaf children. A one-page note on the proposal prepared by GVR set the ball in motion and the intention to establish the centre was included in the interim budget speech that year. A year later. however, not much progress had been made. At that point, GVR was considering quitting his government post and moving on. The Government, however, convinced him to take over the responsibility of establishing the centre as its Founding Director. GVR accepted the responsibility with the condition of exercising complete autonomy in all decisions related to the project, in the process, not even agreeing to accept a token salary of one rupee for the position! Hence, NISH was established in 1997 and registered as a not-for-profit society with the Government of Kerala.

GVR shared how in the initial years, young, fresh graduates from the All India Institute of Speech and Hearing, Mysuru were hired to run the services at NISH. He believes that moulding young minds is much easier as there is not very much that they need to unlearn in the process. One of the first services offered at NISH was the EIP. The programme was mapped on the intervention programme offered by Balavidyalaya, Chennai with inputs from other individuals engaged in exemplary work with young deaf children at the time. In addition to the early intervention program, NISH has now extended its scope of work to offering academic degree programs for the deaf, the Rehabilitation Council of India (RCI) approved rehabilitation courses, such as running assistive technology services, and outreach and advocacy initiatives, for the disabled. You can read more on their website. This write-up details EIP at NISH.

Early Intervention Programme (EIP)

Located within the sprawling NISH campus, the early intervention programme is housed in a single-storey, red brick building with tall coconut trees lining the roadside and distant hills visible in the background. Administrative offices, faculty/staff rooms and therapy rooms surround a play area equipped with swings and other play material on the ground floor. On the first floor of the building are more sound-proof therapy rooms and larger classrooms for group sessions and activities. All therapy rooms are thoughtfully decorated, painted with bold visuals of cartoon characters, wild animals and scenes representing the diverse ecology, vibrant culture and heritage of Thiruvananthapuram. From the moment one enters the premises, it is clear that the ambience has been carefully created to cater to very young children.

The EIP, a flagship programme of NISH was established in 1997 as one of the first initiatives to be launched after the setting up of the organization. Recognizing the importance of the early years in language learning, the programme is committed to providing speech and language training to young children with deafness and hearing impairment. Children as young as three months of age attend EIP after being identified with a hearing impairment either at the Audiology laboratory at NISH or on referral from other hospitals and clinics across the state of Kerala.

The services offered through EIP can be divided into two distinct phases, a Parent-Infant Programme (PIP) and the Pre-school Programme. Typically, a child spends about two years in the PIP followed by a year or more in the Preschool Programme before being integrated into the mainstream at the age of 4-6 years, with a strong foundation and age-appropriate communication and language abilities. With a firm belief in adopting measures that suit the individual needs and capability of each child and family, multiple forms of habilitation and rehabilitation therapies are offered. These include the aural-oral approach, the auditory-verbal approach and the bilingual education approach. While both the aural-oral and the auditory-verbal approaches emphasize on developing the speech and hearing capabilities of young children, the bilingual approach also uses visual cues, such as lip-reading and the Indian Sign Language to strengthen communication skills. The essential difference between the first two approaches is in the way the therapy is conducted. The aural-oral approach is usually conducted with children in small groups of two-three while the auditory-verbal approach, more useful for infants and young children implanted with cochlear devices¹, works best in individualized therapy sessions.

The central quadrangle of the building

The decision to adopt a certain approach for each child is taken after consideration of several factors. These include an intensive assessment by a multidisciplinary team, the age of the child, the family background and the child’s response to the mode adopted. Switching from one mode to another is possible and is done through active consultation with the parents. While a majority of the children go through aural-oral or oral-verbal modes of therapy, for a small percentage (about 30%) the bilingual approach is found more suitable, especially when the child is admitted into the programme at an advanced age or when the parents of the child are also deaf.

The auditory-verbal programme for infants and children implanted with cochlear devices was initiated in the year 2014. Under the Sruthitharangam scheme, the Kerala Government provides free cochlear implant surgery to children with hearing impairment in the age group of 0-5 years. With emphasis on early identification, families with incomes less than Rupees 2 lakh per year can avail of this scheme such that infants as young as six months of age can benefit from an intensive early intervention programme and come at par with their counterparts in language capabilities by the time they are ready to enter the formal education system. Hence, in cooperation with government hospitals, as well as through referrals from private clinics, very young infants who have undergone cochlear implant surgery receive the auditory-verbal therapy at NISH. Teachers who administer these intensive one-on-one sessions are all well-trained and work with the infants and their families through sessions that cost Rs 500 per month. Each child receives eight such sessions in a month that are scheduled in advance.

In the PIP programme meant for infants and toddlers in the age group of 0-3 years, depending upon the mode adopted, each child receives academic intervention in different domains (audition, language, speech, cognition and communication) based on an Individualized Education Plan (IEP) prepared by the teachers and reviewed every three months. The language for intervention, either Malayalam or English, is chosen based on the parents’ fluency in it.

In the second phase, children in the age group of 3-6 years are admitted into the Preschool Programme. In the preschool programme, the now independent listeners are exposed to pre-reading, pre-writing and basic numeracy skills along with an emphasis on developing their receptive and communicative abilities through a structured curriculum. Regular assessment and mapping of children’s progress in consultation with parents ensure that by the end of the programme, children have a strong foundation for general education and have acquired developmentally appropriate language capabilities.

An observation of a session with a two-and-a-half-year-old girl provided some interesting insights into the nature of the auditory-verbal programme. Held in a small, sound-proof therapy room, the session mandates the presence of at least one parent along with the child to attend the hour-long session. The room is well-equipped with materials that one would typically find in a preschool classroom—kid-size chairs and tables, toys, such as blocks, plastic kitchen sets, beads, writing instruments, flash cards, picture and story books stacked neatly in shelves around the room. The teacher, parent and the child sit next to each other in a row, never facing one another. This is done to ensure that the child uses only her listening ability to comprehend the conversation and does not rely on lip reading or gestures. The teacher follows a structured, standardized curriculum that provides detailed guidelines for the development of audition, language, early communication, cognition, speech, social interaction and fine and gross motor skills. Based on individual developmental needs and keeping cultural sensibilities in mind, the teacher adapts the curriculum for daily and long-term intervention with each child. For instance, on the day of the observation, the teacher was working with the child on improving her daily functional skills. The session comprised of teaching the child to eat independently; the mother and the teacher gave the child simple instructions to eat her lunch without spilling, to use the dustbin to dispose of the waste and to pour water from the water bottle to drink on her own. Repeated, precise instructions and the emphasis on conversation made the child follow the instructions and respond appropriately with speech. This child had undergone a cochlear implant surgery only recently and therefore, had greater challenges in comprehension, as well as expression, compared to other children who had been attending therapy for a longer duration. Children who attend therapy for an adequate time-period acquire language capabilities that are on par with their counterparts. Illustrating this, the Founding Director GVR, related the incident of a young girl from the Centre who surprised the Education Minister during a function by asking him not only his name but even the name of his father and grandfather and in the process having the last word with her confidence and advanced language capabilities!

Parents’ Involvement

What comes across quite strongly during observation of the sessions is the importance placed on involving parents in the training sessions. The organization firmly believes in the impetus parents can provide in playing a pivotal role in their children’s therapy. Every effort is made to empower the parents with information and provide them with hands-on skills to work with their children on a daily basis. In a session with an eight-month-old child using a hearing aid, the two teachers worked closely with the mother, providing her with inputs at every stage on how she should speak to the child. The teachers were teaching the mother a phonetic song in Malayalam that she could sing to her daughter. The mother was also being instructed on how she should avoid using colloquial words and speak to the child in full sentences, always. This way, the mother could be empowered not only with appropriate skills to help her daughter acquire language but also be sensitized about her condition leading to greater acceptance and positive attitude, in general.

Another such instance of parent involvement was observed in a group therapy session for children with Autism Spectrum Disorders (ASD). This afternoon session comprised of four-five children accompanied by at least one or both parents attending a group session. With an emphasis on dealing with the challenge of poor ability for social interaction and communication that children with ASD face, the session comprised of a range of activities in which parents were also encouraged to participate. This was followed by precise instructions and distribution of worksheets for parents to work on with the children at home. Parents are also encouraged to participate in all evaluations that are conducted on the children. Assessment forms that monitor children’s performance on a regular basis are jointly filled with indicators of improvement provided by parents and teachers together. GVR shared how parents sometimes interpreted the strict discipline of the intervention process as ‘harsh treatment’ on part of the teachers and often complained about them to the management, only realizing its importance and regretting their behaviour after the completion of the intervention process.

An Inclusive Setting?

Children with hearing-impairment in the age group of 0-6 years who should be attending an early childhood education (ECE) programme in the neighbourhood with their peers are often deprived of the opportunity either because regular schools refuse to admit them or because parents hesitate to send them to such schools fearing exclusion and concerns about their children’s safety. With this in view, the EIP at NISH ensures that all children who attend it at their centre do not miss out on this important learning experience in their lives. Several measures have been put in place in order to make the sessions at NISH as close to the pre-school experience as possible. For instance, great care has been taken to replicate the infrastructure of a preschool (in the form of furniture, swings etc.) Group activities with children of similar ages are organized to facilitate social interaction, teaching-learning opportunities are created using material and equipment which closely map the curriculum, activities and materials that one would find in an early childhood centre. Excited children can be seen scrambling up and down the swings placed in the central quadrangle of the building, squealing and shouting with abandon at any time of the day.

The learning material. 

However, even with all these carefully considered practices, one cannot help but note how these children remain excluded in more ways than one. This is primarily because there are no opportunities for them to interact with children without disabilities. In an inclusive setting, children with diverse learning needs should attend an ECE programme under the guidance of a teacher with expertise in inclusive education. However, because the reality out there is very different, children with disabilities continue to remain excluded, not only depriving them of precious childhood experiences but also shielding children without disabilities from opportunities to be sensitized and gain empathy towards their peers with different learning needs from an early stage. Recognizing this lacuna and striving to fill the gap, NISH conducts outreach activities to sensitize and educate teachers in regular schools towards the needs of children with HI through school visits and regular workshops on its campus. Children attending the Centre, are then, recommended to attend these schools, in a way preparing them for inclusion and seeking better social acceptance as well as more meaningful academic opportunities for the children. Other extension services available at EIP include weekend and summer programmes for children who have completed the programme and are now part of the mainstream education system, as well as a correspondence programme for parents who cannot participate in regular, face to face training. Several success stories of children continuing their higher education in the regular school system and going on to take up careers in professions like architecture and academics can be heard in the corridors of the EIP.

Some Reflections

The EIP at NISH maintains high standards in the delivery of early intervention services to infants and young children with speech and hearing disorders. From the setting up of the Centre in terms of the infrastructure to the delivery of a scientifically based, comprehensive curriculum by expert teachers, and its wide outreach, the programme indeed is an excellent model for other institutions to replicate. What stands out, in particular, is the emphasis on speech and language training delivered through oral and aural modes which abates the use of sign language to a minimal. While the hearing disabled community till date remains divided on this rather contentious matter, this aspect of the programme at NISH is a laudable step towards the inclusion of children with hearing impairment into the mainstream education system and society.

Apart from the fact that the programme duly recognizes the immense importance of identification and intervention in the early years, it is comforting to find that ‘therapy’ is not delivered merely in a clinical setting where children are brought into a ‘hospital like’ space to ‘fix’ their speech and language difficulties. The institution has clearly made conscious efforts to eschew such a medical understanding of rehabilitation and therapy and instead make the experience for a child as close to a regular ECE programme as possible. In future, perhaps ECE facilities can also be opened up for non-disabled children, making the set-up truly inclusive.

The impermeability leading to the near complete absence of children with disabilities from both formal and non-formal education programmes for young children has been a long-standing hindrance in the Indian education system. In this regard, organizations like NISH have an important role to play in setting examples of model inclusive programmes as well as participating aggressively in advocacy and awareness generation campaigns for parents, educational institutions and the civil society, in general.

Acknowledgements: I am very grateful to the management and staff of the National Institute of Speech and Hearing for permitting us to spend time at the institute to observe and understand its activities, in particular, the Early Intervention Programme. I would like to thank Ms Daisy Sebastian, Coordinator-Academics, Clinics and Intervention Programmes, Ms Neetha M N and Prof Satheesh Kumar, Director, Centre for Assistive Technology and Innovation for speaking to us. A very special thanks to Mr Viajaya Raghavan, Founding Director of the institute for a personal interview that provided me with a first-hand account of the setting up of NISH.

AUTHOR

Ankur Madan, Associate Professor, Azim Premji University

REFERENCES

Liberty, K. 2000. Family-focused early intervention: Issues for New Zealand researchers. New Zealand, Research in Early Childhood Education, 3, 31 – 50.