Comprehensive Right Based Life Cycle Approach in Disability Management
Persons with Disabilities are the most disadvantaged sections of the society. They themselves, their family and care takers face several challenges in their daily social life including the social stigma and discrimination. It is accepted and proven fact that physical, mental and sensory impairment can either be prevented or its adverse effects can be reduced through proper and timely intervention. This requires a well-designed Disability Management Approach, a physical and social environment positive to persons with disability and committed delivery system.
Kerala State in line with the latest developments in disability prevention and management across the globe and in the country, launch a comprehensive approach in disability management right from primordial prevention to sustainable rehabilitation of PwDs – Comprehensive Right Based Life Cycle Approach in Disability Management- named “ANUYATRA” means walking together. This project will be implemented in a campaign mode with specific objectives, tangible indicators and time bound activities.
Vision: Transform Kerala to a Disabled Friendly State through a Comprehensive Rights Based Life Cycle Approach.
1. Prevention of Disabilities both Congenital and Acquired.
2. Early Screening and Detection and Early Intervention.
3. Provide support for training, skill development, education, employment, rehabilitation and socialization.
4. Provide appropriate Modern Assistive Devices/ Technology Solutions
5. Ensure services based on Individual Care Plan.
6. Organise Community Education Programmes to remove the social stigma and isolation to PwDs.
7. Provide support to ensure the Rights of PwDs.
8. Provide barrier free environment for PwDs.
9. Strengthening of institutions and systems for PwDs.
10. Strengthen Local Government Institutions for effectively addressing issues of PwDs
11. Establish Institutions for Community Based rehabilitation (CBR).
12. Ensure a disabled friendly environment in all walks of life.
1. Comprehensive Life Cycle Approach
2. In line with the Rights of Persons with Disabilities act 2016
3. Special emphasis on Intellectual Disability, Developmental Delay and Hearing Impairment
4. Targeted approach in special areas of Focus like Tribal sector, Coastal sector etc
5. Innovations in disability management
6. Convergence of Services, Resources and Institutions
1. Primordial and Primary prevention Activities.
2. Secondary and Territory prevention Activities
3. Permanent District Early Intervention Centers (DEIC)
4. Mobile Intervention Units
5. Early Intervention Units in focused areas ( tribal, coastal etc)
6. Strengthening of Existing District Early Intervention Centers (DEIC) of RBSK
7. Disability Correction Surgeries
8. Special Anganawadies for intellectually challenged pre school children
9. Support for Strengthening Buds Schools
10. Promoting inclusive education
11. Establishing Model Child Rehabilitation Centers
12. Establishing of Buds Rehabilitation Centers and Assisted Living Home
13. Vocational Training programmes
14. Support with Assistive Technology devices/ Assistive Solutions
15. Individual Care Plan
16. Project Autism
17. Kathoram for Hearing Disability
18. Issuing Unique ID for persons with disabilities (UDID)
19. Enrolling in Health Insurance Scheme
20. National Workshop in Disability Initiatives
21. Student Initiative in Disability Management
22. Centralized Help Desk for Persons with Disabilities
23. IEC Activities
24. Community Education and Sensitization
25. Innovations in Disability Management
Primordial and Primary Prevention
o Awareness creation regarding pre natal determinants of Disabilities - Consanguinity, Anemia, Early marriage, late pregnancy etc.
o Disability Education in pre-marital counseling including the need for Folic Acid, Rubella Vaccination, Planned Pregnancy etc.
o Strengthening Antenatal and Perinatal care with emphasis on disability prevention.
o Community Education programmes to prevent Acquired Disabilities including those due to road accidents
Early Identification by strengthening New Born Screening Facilities.
1. Training in Disability Screening to Doctors, Staff Nurses and all Delivery point JPHNs.
2. Training to Delivery Point JPHNs of NHM and Hearing Screening JPHNs of SID and attach them with the Pediatric Department/Delivery points of Hospitals.
3. Disability screening chart at all delivery points
4. Equip all delivery points with adequate facilities for new born screening, early identification and minimal intervention to limit disability
5. Strengthen facilities in State Public Lab and Regional Public Labs for New Born Screening of disordersand factors causing disability.
6. Strengthen Universal Hearing Screening of Neonates and establishing OAE screening at all delivery points
7. Hearing screening of all Anganawady and pre-primary School children.
Establish Permanent District Early Intervention Centers in all Districts (DEIC)
With the objective of providing quality services to persons with disabilities especially to children, permanent District Early Intervention Centres will be established in all Districts with all modern facilities and equipment. Sufficient manpower and technical professionals will be provided. Quality services service will be ensured. All types of disabilities are managed under one umbrella is the concept behind permanent DEICs.
Mobile Intervention Units (Service at Doorstep)
Early screening and early detection and intervention is the universally accepted protocol in disability management. Children with disability are to be provided with proper medical support and appropriate therapies, so that their disability can either be corrected or the magnitude and manifestations of disability can be minimized. In order to accomplish this situation, the children with disabilities have to undergo various therapies like physiotherapy, occupational therapy, development therapy, speech and language therapy, psychological therapy etc depending the nature and severity of disability. Along with this process their parents are also be trained in various aspects of follow up training and for confidence creation. This process doesn’t properly take place mainly because of the scarcity of institutions providing such services. Equally the matter of concern is that the institutions available are located in District Headquarters/ Taluk Head quarters. This situation desist the parents of children with disabilities residing in rural areas particularly with low income background in accessing such services. It is realized that most of the parents of children with disabilities avail services in the initial stages, subsequently abstain from continuing therapies due to difficulty in bringing children to distant places, or due to financial limitations. As part of Anuyatra Campaign 25 Mobile Intervention Units (MIU) ie, at the rate of one MIU for six Block Panchayats, will be established.. Each MIU shall comprise of one Developmental Therapist, one Physiotherapist, one Speech therapist and one Special Educator with necessary equipments. MIU Project will be implemented as an outreach activity of the existing DEICs with the support of LSGIs.
Early Intervention Units in Focused Areas
Certain specific areas like Tribal Settlements, Costal Areas etc has high incidence of disabilities where intervention facilities are less. Lack of awareness and difficulties in accessing therapy centres are the most prominent factors prevents them from availing therapy other related services. Keeping this into consideration, Special Early Intervention Units will be established in such areas of focus. The first unit of this kind will be established in Attappady. This facility will subsequently be extended to other identified areas.
Disability Management will be one of the core activities of Anuyatra. Emphasis will be given for the management of intellectual disabilities like Mental Retardation, Cerebral Palsy, Autism, and Multiple Disabilities
Strengthening of existing of DEICs of RBSK
With the objective of providing quality services to Children with disabilities till the full-fledged permanent DEICs become operational the existing DEICs of RBSK will be strengthened by filling the gaps in man power, equipments, training etc. The service of a Development Therapists and Special educator i(HI) will be additionally provided to all DEICs of RBSK. Capacity Enhancement Trainings and domain specific skill up gradation trainings will be imparted to the existing DEIC professionals including, Paediatricians.
Disability Correction Surgeries
There are instances of persons with disabilities who require correction surgeries. As a component of Anuyatra campaign correction surgeries to the needy children will be undertaken. This will be implemented as a collaborative programme in association with IOA and other Non Government institutions. Full fledged disability correction centre will also be established.
Universal Developmental Surveillance and Management:
Universal Developmental Surveillance and Management System will be established (first 1000 days) based on Trivandrum Developmental Screening Chart (TDSC) for 0 to 3 years and Parental Evaluation of Development (PED) tools developed by Child Development Centre. A pilot project on Community Based Development Surveillance will start shortly. Anganawadi Workers and ASHA workers will be trained in early identification of developmental challenges based on CDC scale.
In order to take care of pre-school children with special needs and intellectually challenged and developmentally delayed Special Anganwadies will be established in all districts. Through this project children with disabilities at preschool stage itself will be identified and provide services, therapies, parental awareness, etc so that the possible numbers of such children shall be send to mainstream education
Strengthening Buds Schools:
Most of the Buds schools functioning at present are not able to provide the expected level of services. Lack of trained caretakers, deficiency of appropriate professional and technical support etc are the reasons behind this situation. Moreover the number of Buds schools existing are very few in number. The Local Bodies can contribute remarkably in this area, provided they are endowed with proper guidance and technical support. As part of Anuyatra Campaign technical and professional support for establishing new buds schools and strengthening the existing buds schools will be provided.
For promoting inclusive education special teachers of IED and SSA will be trained for better performance, Barrier free access shall be ensured and at least one Disabled friendly toilet will be provided in each school. Parents of children with disabilities will be motivated to send their children to regular schools. Orientation to teachers and PTA will also be organized.
Establishing Model Child Rehabilitation Centers (MCRC)
The number of children with development delay and mental retardation in the age group 10-18 is estimated as 28,000 as per Disability Census 2015 conducted by Social Justice Department. A significant number of children falling in this group refrain from therapies due to difficulty in accessing the institutions. In order to overcome this situation 28 Model Child Rehabilitation Centres (MCRC) will be established for providing quality services to this category ie, at the rate one MCRC for each 1000 population.
Buds Rehabilitation Centres and Assisted Living Homes:
Anuyatra campaign envisages establishing of Buds Rehabilitation Centers and Assisted Living Homes. This will be implemented as a need based activity.
Steps for establishing institutions for providing vocational training in collaboration with vocational institutions will be initiated. Training and placement potential through ASAP, DDUKGY will be explored. The benefit of schemes like NULM, NRLM etc shall be effectively utilized for providing employment to PwDs. Apart from this the employment opportunities for PwDs in mega projects like Vizhinjam Harbor, Smart City, Kochi Metro, Technopark etc. shall also be explored. .
Assistive Technology / Technology Solutions
A centre of excellence will be established to identify, plan and propagate new technologies and IT enabled cost effective assistive devices in line with WHO guidelines for assistive Technology for LMICsand for providing appropriate Technology Solutions
Individual Care Plan.
Steps will be taken to provide customised services based on an Individual care plan for each person with disabilities In the first phase this will focus to those with profound disabilities. Provide timely support and appropriate services based on ICP is one of the core objectives of ANUYATRA campaign. Under this programme services will be ensured with the support of Local Bodies and by availing the technical support of institutions.
Autism Spectrum Disorder (ASD) management Centres will be established in all Government Medical Colleges and Government autonomous institutions which are having excellent track record in this sector.
Universal Hearing Screening Programme to Life Cycle Approach in Hearing Disability Management.
With the objective of early screening and early intervention of hearing disability at present hearing screening of neonates are done. The hearing Screening will be elevated to a life cycle approach in Hearing Disability Management and will be implemenedt as a special project named as Kathoram – as a component of Anuyathra campaign - with a 1,3,6,18,42 month time line interventional approach as detailed below.
a. Hearing Screening at Birth or maximum by 1st month
b. Software based Real Time Data Entry.
c. Confirmation of hearing disability by 3 months:
d. Support with Hearing Aids and Auditory Verbal Therapy at 6 months:
e. Cochlear Implant at 18 month
f. Post Implant Habilitation Therapy up to 42 months
g. Follow up at Anganawadies and School
Virtual Rehabilitation Units
Virtual reality is a technology that provides a sense of presence in a real environment with the help of 3D pictures and animations formed in a computer environment which enable the person to interact with the objects in that environment. In other words, VR described as an improved form of human-computer interaction that allows the user to be part of and interact with a computer-generated environment.
VR use in physiotherapy and rehabilitation has increased significantly in the last 2 decades across the globe. Depending on the characteristics of the software used, VR-based therapies provide significant experiences to the user within the targets of the therapy. VR applications became the spark among new treatment modalities used for children with Cerebral Palsy as computer technology became intriguing and motivating for children. VR provides an opportunity for active learning, encourages the participant, and ensures motivation. It enables performing difficult movements in a secure environment and objectively shows the behaviours that are a result of these motions. An ever-increasing number of studies report that VR implementation in children with CP positively affects brain reorganization, plasticity, motor capacity, visual perceptive skills, social participation and personal factors.
The results of the use of VR as a habilitation and rehabilitation approach in children especially in cerebral palsy cases are promising. A total number of 20 Virtual Rehabilitation Units will be established ( In14 DEICS and in 6 Medical Colleges where Autism Centres are being established)
Centralised Help Desk cum Grievance Redressal Cell for PwDs(Call Centre)
As per disability census, there are 7,93,937 Persons with Disabilities (PwDs) in the State. It is a matter of fact that the persons with disabilities especially Intellectually Challenged and Development Delayed children require continuous support and attention. There are many institutions working for the welfare of PwDs. Likewise there are many welfare programmes like pensions and other assistances, scholarships, concessions to different categories of PwDs. Most of the parents/caretakers of PwDs are not aware of the details of such services and assistances and how to access them as there is not a single point information service system where the PwDs/their parents/care takers can easily contact and get advices and clarify their doubts.
is a constant demand from the part of parents, care takers of PwDs, experts, institutions, media and well wishers that a fully equipped help desk shall be established. Taking all the above facts in to consideration, a Help Desk will be established at the Office of Kerala Social Security Mission. Through a toll free number, anyone can access the help desk from where replies to queries, details of institutions and services, details of schemes, proper advices etc. for PwDs will be provided.
Student Initiative in Community Based Rehabilitation.
In order to instil better orientation to the student community of Medical Colleges and to become more proactive towards Social Health Issues and to develop a socially committed next generation doctors and nurses they were allocated to field areas for house to house visit for ascertaining their Health and Social status and enabling environments. Through this programme, they learn to empathise with the needs and feelings of differently abled and they nurture themselves for a socially committed profession and change in their social perceptions. At present, this activity is confined to limited areas mostly near by the Medical Colleges due to many constraints and limitations. It is ascertained that this potential of student community can be widened by providing support to the Community Medicine Department of Medical Colleges and there by expand the scope of the community activity to vulnerable areas like coastal belt, fishermen community, tribal community etc. Viewing this aspect in the angle of disability management, it will enhance the chances to reach the islands so far unreached and thereby expand the scope of activities of SID by utilising the service of medical students in disability management. Keeping this in view a Project “Student Initiative in Community Based Rehabilitation will be implemented in association with Community Medicine Department of Medical College, Alapuzha.
National Workshop on New initiatives in Disability Management
For addressing the multifaceted manifestations of disability and managing its diverse complexities higher level of competency and professionalism is required in its approach and planning. Whatever be the category of disability, each stage of intervention right from primordial prevention to sustainable rehabilitation need appropriate services, adaptable technologies, accessible environment, feasible models of community participation, Resource mobilisation strategies, cost effective technologies, affordable and acceptable practices etc. In our country there many institutions and organisations both in public and private sector conducting research and studies in this area and come out with replicable models of innovative interventions. Many states have evolved their own strategies for rehabilitation, education and employment. There are organisations including MNCs providing employment to PwDs. In order to learn and comprehend such efforts and to prepare a customised disability management development plan for interpolating more effectively in the disability sector, a national workshop “NATIONAL WORKSHOP ON COST EFFECTIVE INNOVATIVE TECHNOLOGIES AND BEST PRACTICES IN DISABILITY PREVENTION AND MANAGEMENT” participating the cross section of national experts working in disability sector is proposed.
UDID Project (Unique ID for Persons with Disabilities)
Ministry of Social Justice and Empowerment, Government of India is in the process of implementing UDID project. The Objective of the project is to issue Unique ID to Persons with Disabilities and to create a National Database of PwDs. The issuance of UDID cards is an online process through the special software developed for this purpose by the Ministry. At State level Department of Social Justice, Health and Revenue are involved in this process. There is a State Level Admin and District Level Admins for each Department. As per GO (Rt.) No 555/2016/SJD dated 29.11.2016, Kerala Social Security Mission is the nodal agency of UDID project in the State. It is proposed to implement this project as part of Anuyatra.
Swavlamban Health Insurance:
Swavlamban Health Insurance is an insurance scheme for the persons with disabilities which provides health insurance upto Rs. 2 lakhs. An amount of Rs. 357/- is to be paid by the beneficiary who desires to enrol in this scheme. Administrative sanction has been accorded for implementing the Swavlamban Health Insurance Scheme by meeting the beneficiary contribution of Rs. 357/- to 100,000 PwDs coming under BPL category by state Government. The list of one lakh PwDs are ready for enrolmen.
IEC and BCC activities
Training for the Intellectually Challenged children in Magic (M Power)
For the effective dissemination of the spirit of Anuyathra campaign, intensive IEC activities with innovative tools and with the involvement of primary stake holders are essential. As such a novel project - Training for the Intellectually Challenged children in Magic named as M - Power is derived. As the first phase 20 intellectually challenged children are selected from different special schools and BRCs in and around Trivandrum. Magic learning will help these children to easily overcome their limitations through quick response and thereby become intrinsically motivated. Through continuous practice they will have the opportunity to turn their failure to success, in an intense manner. The training is organized in collaboration with Academy of Magic sciences, Poojappura under the patronage of Sri. Gopinath Muthukad, the famous magician. This Team will be the Ambassadors of Anuyatra Campaign.