UNNATHI 2020

14-11-2021, 15-11-2021

UNNATHI | Two-day conference for children, parents, teachers, and social workers who are involved in children with disability wellbeing.

The conference topics were:

  • Services/ Schemes available for Children with disabilities.

  • Early interventions and long-term health care plan for Children with disabilities.

  • Oral health care for children with disabilities.

  • Psycho-social Care

          a) Mental well-being of children with
          disabilities and parents


          b) Building a positive and inclusive home
            environment


           c) Transition from childhood to adulthood.
 

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Services and Schemes for
Children with Disabilities

          The first speaker of the webinar Mr. Sureshan Puthiyadathu commenced the session with a brief introduction to Rights of Persons with Disabilities, RPWD Act,2016.He spoke about the different facets of the RPWD Act. Talked about the need for the government to enforce and strengthen the operations on it. He also mentioned the importance of the awareness about this act for the persons with disabilities to secure their benefits and services offered by the government. With this, he sought to draw the importance of NGOs working for persons with disabilities to act as a collaborator between the persons and government . Later, he described various schemes, which are as follows:

Mr.Sureshan Puthiyadath (State Project Coordinator National Trust Act Special Cell, Directorate of Social Justice, Thiruvananthapuram)

National Trust Act 1999

          The National Trust Act is a statutory body of the Ministry of Social Justice and Empowerment, Government of India, set up under the National Trust for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. The main objective of this act is to facilitate the realisation of equal opportunities, protection of rights and
full participation of persons with disabilities.

Niramaya Health Insurance Scheme

It is the scheme to provide affordable health insurance to persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. It has a single premium across age band and it provides the same coverage irrespective of the type of
disability covered under the National Trust Act. The applicants will be provided with₹100000 health insurance for one year. The services range from medical checkups to hospitalization, therapy to corrective surgery, transportation and it will be
available in both government and private hospitals. For people who belong to Above Poverty Line (APL) can apply to this scheme with ₹ 500 and Below Poverty Line (BPL) can apply with ₹250. In India, about one lakh people have availed this
insurance. In Kerala enrolment for the scheme is free.

Agencies Under Social Welfare

Department for Disability  Management

  • Kerala Social Security Mission

  • National Institute for Speech and

       Hearing (NISH)

  • Kerala State Handicapped Welfare

       Corporation.

  • National Institute of Physical Medicine and

       Rehabilitation(NIPMR)

  • Community Disability Management and

  • Rehabilitation Program(CDMRP)

Early Intervention and long term

Health Care Plan for Children with Disabilities

          Early intervention means identifying and providing the required assistance in the early stage before the problem gets worse. This helps to minimize the effect of the problem towards the person . In the case of children with disability the early interventions and health plan according to that support the development and wellbeing of them.

Dr MKC Nair(Formerly Vice Chancellor KUHS, Director, NIMS Spectrum CDRC)

          The doctor then explains the importance of BIO-PSYCO-SOCIAL model , he explains the topic with an example; for the treatment for depression we need to consider three levels BIOLOGICAL- Neurotransmitters - so need drug therapy.
PSYCHOLOGICAL-cognitive error need counselling SOCIAL-family and peers- need support The speaker started with the history of laws and policies for persons with disabilities in 
India

HUMAN RIGHTS FOR PERSON WITH DISABILITY

  • Free education

  • Privacy shelter

  • Timely medical aid

  • Fair trial, legal aid

  • Right to live with dignity

  • Right to healthy environment

What is disability?

          According to WHO sequence of events that leads to disability or handicapped which are Injury or Disease ( here we
should need a proper medical treatment) This injury further leads to impairment, which is neurological issues. Here comes
the importance of the early intervention to avoid disability. Disability means that person cannot do anything with that
particular organ ( functional issues).For the person with disability there is a need of rehabilitation which prevent that person turns handicapped (which depends on the perception of the society on the appearance of that person). Then the speaker explains how disability is identified by the society. Most of the time only visible disabilities are noticed
and invisible traits which lead to disability in future are ignored .So for the children below 6years , our focus should not be only on disability. We should focus on

Developmental delay, Communication delay,
Language delay, and Motor delay

          and also on 10 major neuro developmental disorders. The types and prevalence of these Neuro developmental disorders in childhood was explained Types
1.Global Disability Delay/intellectual Disability
2.Cerebral palsy
3.NeuroMuscular Disorders
4.Autism Spectrum Disorders
5.Speech and Language Disorder
6.ADHD

7.Vision Impairment
8.Hearing Impairment
9.Learning Disability
10.Epilepsy


         The persons who has permanent disability will be having any of these disorders at their younger stage. If we detect any of the symptoms at the earlier stage, that would be very helpful for an effective intervention . The speaker had written a book which depicts how the process of intervention is done through different stakeholders.

Oral Health Care For
Children with Disability

          The speaker starts the session by sharing the basic information about the dental system. First she dealt with the structure of the human dental system. Then she explained the various dental problems and how it is a risk to children with disability. The preventive measures and
tricks were also discussed.

STRUCTURE OF TEETH

          Teeth consist of different parts. The crown, neck and the root. The crown is projected outward whereas the root descends below the gum line. A protective layer called enamel covers the teeth. The part between the crown and the root is called the neck. Root is the portion that extends through the gum and into the bone of the jaw.

Dr Sreedevi Warrier(Consultant, Pallium India)

MILK TEETH

          It is the primary teeth in a child’s mouth. These teeth start forming when the baby is in the mother’s womb. It starts coming out after 6 months of birth. A total of 20 milk teeth come out of the child’s jaw by the age of 2/3years. A child needs these milk teeth for chewing, proper facial appearance, clarity in speech. Milk teeths are small and whiter.

PERMANENT TEETH

         The first permanent teeth in our mouth are Molar teeth. All the permanent teeth erupt between the age of 6 to 21
years. It consists of 32 teeth, 16 in each jaw. They are stronger and yellowish in color.

WHY IS ORAL HEALTH IMPORTANT
FOR CHILDREN WITH DISABILITY?

          It is very important to take good care of oral health for children with disabilities. Mostly, these children are prone to chronic physical, developmental and emotional conditions. Thus, extra care needs to be taken. The speaker shared that in her opinion for the children who are having developmental disabilities their smile is the best way of interaction with the world, so it is very important to take extra care to their teeth to maintain their sweet smile. Most of these children have so many medications to take daily for different problems. So in such cases less priority is given to their dental health. But when it comes to situations having bad dental health it becomes very difficult to treat such children. It is very difficult to take them to a dental hospital when they have tooth pain. The most important concern is it is difficult to regain their sweet smile.which is their only way of interaction with their loved ones

 

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Psychosocial Care for
Children with Disabilities

Dr Priya Treesa Thomas                  Dr Manjusha Warrier G                       Mr Arun Sadasivan

          The whole session was divided into 3 parts & the
first session was handled by Dr. Priya Treesa Thomas

         In the first session she explained the importance of providing psychosocial support to the children with disability. For children with disabilities most of the people give proper medical care and
neglect the importance of psychological support. We must identify their tastes and areas where they need support. Also listen to the minute facts of children with disabilities, it will help us to solve the
huge problems. So we planned this session in such a perspective that what are the things that we should notice even in our single steps while giving care to the child and the areas that we think to improve . What improvements can we have to do in those areas . In this discussion the main topic is to discuss those important areas - the psychosocial areas of our children.

          Root agenda is that even though they are children with disabilities they are children. We give them the opportunity to play, learn and grow together. All the persons who choose their profession to work in this area, focus to identify their abilities rather than their weakness. The need for psychological support varies with the physical property, individual difference, environment and treatment. We have to understand their physical and psychological needs. This means that they are able in a different way. If the child shows a physical and behaviour change at a sudden, then we need to give more attention to the child because it may need psychological support. We are able to see their physical problems or any disability, so we gave them medical care. So the child gets the medical care, but medicare is incomplete until his psychosocial wellbeing is not considered. The parents or caregivers find it difficult to handle the psychological side of the child’s disability. Various factors which affect the psychosocial health are biological, psychological, social and the treatment modes. The Difficulties should be treated with an evidence based approach or interventions with the expert. Very much importance should be given to the early intervention to avoid the severe impact of the disability in children in future. If the child is provided with appropriate support from the related stakeholders every child will develop effectively with
potential outcome. Different children have disabilities in different areas, like physical, cognitive, behavioral, sensory and chronic health disabilities. Along with these visible disabilities we have to give much attention to the psychosocial problems
related to these disabilities.

SPECIFIC AREAS OF RISK THAT
THE PARENTS SHOULD NOTICE

          If the child had any difficulties in interaction with the friends, if he/she become isolated from peers, family and society, the parent has to know if it happened due to the disability of the child and have to support them to overcome the problem. Parents need to understand the difficult areas of disability which leads the child to draw back from his peer group. Ensure them full support to overcome such difficulties. Sometimes the child is very aggressive and agitated in nature, but
be with them in their problematic condition. The parents and the siblings can do much to support him. The parents can do a lot in the field before that they should get enough support from others. The support system can include doctors, psychologists, counselors etc. Sometimes the disorder takes time to progress but sometimes it is rapid. Screening should be done to identify the disorder, as the time of treatment is as important as treatment. Counselling, educational intervention   etc can benefit. Parent is the main care coordinator. They can connect the children with the health circle like friends, school and peer, social media platform etc. These circles encourage them to become autonomy and build self esteem. Nowadays the teachers prepare individual education plans for differently abled children, is very helpful for the educational purpose of
these children and this is an appreciating effort. So we can conclude that the parents and adults should give attention to the differently abled children and connect them with the supporting factors.

ABOUT BUILDING A POSITIVE
AND INCLUSIVE HOME
ENVIRONMENT

                                                                                                                                                                               Dr. Manjusha Warrier G.

Home environment will determine child's self determination. Though many of the children with disabilities try to attend school, but most of the time that won't works. Especially during this pandemic situation most of the children spend much of the time at home. Playing is an important aspect for the development of child. This will help them to acquire many skills. The physical and social environment at home enables the child for a better way of development. The assistive technologies are found to be very useful. Each and every support that we provided are considered as assistive technology, but ensure that the facilities are provided in a appropriate way. Assistive technologies aimed at improving or creating opportunities at certain domains of the physical environment such as the

NURTURANCE: Light, temperature, color, texture, room arrangement can enhance child feelings of safety and security.

TERRITORY: claiming control over a particular area and they can reach favorite toys or regulate stimulation.

IDENTITY: children should have their identity reflected in their surroundings and they should enjoy some freedom to express their identity through the personalization of space.

STIMULATION: everything in the home setting provides stimulation for young children.

MANIPULATION: children derive satisfaction from actively shaping and changing the environment.

SOCIALIZATION: The contribution of the family to social interaction and friendship formation for children with disabilities. For providing inclusive home environment family characteristics, interactions and relationship, resources, life span issues are need to be considered. As a conclusion she mentioned that building a positive and inclusive home environment for children with disabilities need some requirements. It is, interaction and interventions focusing on enhancing facilities and comfort at homes, as well as improving the family system, subsystem and the family's connection
with the community.

TRANSITION FROM CHILDHOOD
TO ADULTHOOD.

                                                                                                                                                                                        Mr.Arun Sadasivan.

          Transition is not just about a shift in age from childhood to adulthood but also a period of development and self equipment. It is a dynamic process and everyone will undergo this despite any personal challenges or limitations. There are several indicators to mark these changes like social indicators. Emotional and behavioral changes also becomes visible. Based on these indicators we can say that a child is developing or has developed based on their age. These developments occur in different stages. Every stage is interconnected and is challenging also.

          Children need support while they are going through these transitions. Parent's perspectives and Childs perspectives of transition are to be considered by the professionals. Children also have different perspectives. It is seen that there is a lack of support. When the perspectives of parents change, then the perspective of a child will change. When children grow older; they tend to be scared of expressing emotions like anger, silence, hostility and deep sorrows. This is the perspective that the children take from their parents. Here we need the support of medical professionals and trained counsellors. Most of the time, a communication barrier is observed. Either parents don't communicate with children or children don't communicate
with parents. This forms major challenges observed in the transition period. All people have a wide mindset from their
childhood. A child's mind is huge, and their imagination capacity is also high. But it is observed that most of the environment even restrict child ability to imagine and dream. Children are restricted and caged. There are many minute facts to be considered here too. Parents tend to focus on larger goals like treatment or complete recovery. This makes the micro goals invisible. Children can face different kinds of diseases. Some of them are progressive in nature, whereas some are not. Specialized care is essential at these times. Along with that , it is also important to provide opportunities for the children. Apart from the involvement of the parents and the associated foundations, the active support from the peers and
young people are necessary. Make development of skills like self management and self determination, supported psychosocial development, make provision of choice and information. Coming years we need society to share their responsibilities. Peer involvement is one of the effective factors. The inner motivation of a child is also very important. Areas focused during transition are activities of daily living, mobility, transportation, health care, living arrangements, recreation, leisure and community participation. It will help them be capable of understanding and accepting their present conditions so as to prepare to meet at later. He also discusses two models. The traditional medical model and the Psycho-social/ independent living model. Traditional medical models focus on fixing problems related to functional limitations and inadequate performance of activities of daily living. Psychosocial or independent living models focus on attitudes, adjustments, control, accessibility, availability of independent living support.