Monday, December 2, 2013

ADC : On the Progressive Way

Children with disability are more subjected to the discrimination and social exclusion.
 They need the special attention, extra support and services in comparison to the children who are not disable. In country like, Nepal where the incidence of poverty is 25.2 % according to the report made by World Bank in 2010. Poverty or not affordability of the services is one of the major contributing factors behind the occurrence of the disability and in other turn disability also contributes on creating the poverty in family, community and whole nation. Therefore, poverty is called as the cause and consequence of disability. Similarly, absence of and inaccessible services is also a contributing factor of increasing burden of disability. 

The services to the children with disability should be special where continuous care, follow up and the skill of the service providers is dominant to produce the positive impact on the quality of life. Nepal already signed United Nations Convention on the right of person with disability (UNCROSS). An article 25 of UNCROSS obligates the state party on ensuring the rehabilitation and habitation for the person with disability who needs it. Rehabilitation and debilitation is directly linked with the participation and social inclusion of the person with disability. Following the signing of UNCROSS and its ratification in Nepal, there has been many changes on the vision and the way to look person with disability by service providers, decision makers and right holders but still there is a huge pile of work that needs to be achieved to satisfy the philosophy of UNCROSS in Nepal. Similarly, the contribution of International non-government organization like Handicap International, Save the children, Action aid, International Nepal fellow ship and Plan Nepal should be well appraised as their contribution on uplifting the service delivery and policy level (twin track approach) is praiseworthy.
The implementing methodology to incorporate the philosophy of UNCROSS into the real practice is “community based rehabilitation”. The availability of the child centered rehabilitation services is less in Nepal. There are only few rehabilitation centers that provide services in a sustainable fashion. Government of Nepal has not completely owned this sector though it has started funding (small amount) on few of the rehabilitation center located in some other districts. Surkhet, where ADC is located is not being funded by the government till date. The small rehabilitation center which was running by the hospital was recently closed due to the crises of funding. Now only one rehabilitation center that is “International Nepal fellowship” is at the function in Surkhet that provides services to the person with spinal cord injury and leprosy. As per the recent census the population of the children having the age range  0-14year in Surkhet is 122,431. Out of them, 1.94% is with disability which is 2375. Out of 2375 children with disability, 36% are with physical disability which is 855. The figure gives huge number of children who need rehabilitation services in Surkhet only. Therefore ADC was established in 2011 with an objective of improving the quality of life of these children through the appropriate rehabilitation and referral services.
Association for Disabled and helpless Children (ADC) is located in Surkhet district. Surkhet is one of the regional hub of Nepal among five others. It’s a valley braced by the hills around and is adjacent to 5 other districts. ADC is located in the heart of Surkhet which is called Birendranagar. ADC mainly focuses on children with disability who are helpless and marginalized. As the prevalence of C P among the children is maximum, the rehabilitation services of ADC are more focused on them but however ADC also provides the services to children with other type of physical disability.

                                                Service Delivery

Yamuna for Physio Therapy
Pragyan is  treating By P T A Om Basel

  The services being delivered at present is physiotherapy through qualified and experience physiotherapist and experienced physiotherapy assistant. For the children who stay throughout the day and children who are admitted in hostel,two physiotherapy sessions are provided. For the new child, at first assessments done and therapy is planned accordingly. Similarly, for the regular child, reassessment is done in every 2 months.
Physiotherapist also sets a SMART and participatory goal to all children. The therapy is delivered in the form of play which is the standard management principle for the rehabilitation of the children with disability. Once in a quarter, a group therapy session that comprises of 10-15 children with family members is also conducted. Different joint play activities are designed for the children and family members. The group therapy session is a therapy methodology of the children in one way and in other way it also promotes the exchange of thoughts among the family members of the children with disability. The exchange of the information and the games always boost their morale, makes them happy and more participative at the rehabilitation process.

2.2 Counseling and special education

Special Education Teachrt Bind Teaching The Students
At present, ADC does not have qualified counselor and special education teacher who have received an educational degree from recognized institution. But there is the dire need for this service as family members at the initial visits are observed with huge stigma and over expectation. An international model of disability creation process highlights the personal and environmental factors that affect the activity of the person with disability. It’s not only an impairment that contributes to the activity of the person with disability, in fact there other factors like self-esteem of person with disability, attitude/support of family members , attitude of community ,availability of the services(rights and benefits) and other social factors equally contributes to the activity of the daily living of the person with disability. Therefore ADC decided to include the counseling and special education as the service in adjunct to physiotherapy and referral services. ADC has a special education teacher based at the ADC rehabilitation center.She is a mother of the child with CP and has been contributing to the disability sector at Surkhet for the long time. She has a very good understanding of national polices related to disability as well as rights and benefits of the person with disability in Nepal.
Herc ore job responsibilities are,
·         Educating the family members about the importance and their roles at the course of rehabilitation
·         Supporting the family members on receiving the rights and benefits for the children with disability that has been allocated by the government of Nepal.
·         Providing the basic education to the children with disability who attend the rehabilitation session
·         Supporting the Physiotherapist on conducting the group therapy session
·         Assisting director if assistance is required for priority office work.
2.3 Accommodation facility linked with therapy goals
Inpatient having lunch in ADC kitchen
  Rehabilitation is a long term, joint and participatory process. Therefore the routine followup and the active participation of the family member is must to achieve the set rehabilitation goals. Similarly in presence of the family members and based on the mutual understanding the therapy goals for the children is set and a joint strategy is made towards the achievement of the goal. The system of the joint goal setting has made parents more responsible toward the rehabilitation of their children thus supporting the timely achievement of the goal. On the other hand, participatory goal setting also satisfies the philosophy of the right based approach of the service delivery.

2.3.1 For the children around the vicinity of Surkhet:

The appointment for the routine therapy follow up is given. Family members are encouraged to attend the therapy session daily and if not at least twice a week so that they could learn the home exercises and other precautionary measures.

2.3.2 For the children from distant villages and nearby districts

Most of the children with disability belong to very poor socioeconomic category and they could not afford to stay for the full rehabilitation with their child at Surkhet. Therefore, ADC attempted to ensure the equitable and accessible services to those children by starting the free hostel facility in it’s’ rehabilitation center that has capacity for the 3 children and their 1 family member. The name of ADC is being popular in nearby districts day by day. This could be the reason behind receiving the frequent request from the family members of a new child from other district. At present, based on the severity of the condition, ADC prioritizes the hostel need of the children. A call or the information is passed to the waiting family in queue upon the availability of rooms.

1.     Some other pertinent activity and evolutions of the projects

3.1 Meeting with Dr. Jack

Dr. Jacques Vigne & Gyanendra Gautam

Dr. Jack is the French psychotherapist, social worker and the writer of different book in religious subject Psychotherapy. At present he contributes in social work staying at Uttarakhanda, India. He has been the backbone and path shower to ADC from the beginning to now. His eternal support and expertise has always served a milestone for ADC.
In October 2013, Manager of ADC, Mr. Gyanendra Gautam conducted the meeting with Dr. Jack and did the overall reporting of ADC. Dr. Jack advised ADC to capitalize the three year of the work experience in disability sector and use that knowledge for the further strengthening of service in a sustainable fashion.

3.2 Monitoring visit by Mr. Michale

Chantle playing with Children
Michael & Chantle

ADC would like to deeply thank Mr. Michale and his wife Chantal, who have been the pillars to brace the ADC since from it’s establishment to now at every stances. Like previous year, this year also Michale and his wife conducted the monitoring visit to ADC in October 2013. The overall service delivery part and the way ADC utilizes the resources for the children with disability was monitored. His feedback on further improving the service delivery and documentation parts has been deeply realized and being converted into the actions.
3.3 Visit by Butwal Rotary
Butawal Rotary Team , handover the equipments provided by a French Rotary

On 18th September 2013, the team from Butwal rotary did the supervision visit to ADC. The executive board of ADC did a warm welcome to the visitors and also made visitors well known about the working modalities and the dimensions of ADC on the service delivery for the children with disabilities.
Butwal Rotary Providing Cheque to ADC Manager

2.     Sincere gratitude to the donors

Since after the establishment, ADC has been attempting to strength it’s services to till date through the supporter who live inside and outside Nepal. ADC and on behalf of children and parents of children with disability would like to whole heatedly thank to all for the kind support who really thought about these children to make their life meaningful. ADC and these children would like to extended sincere gratitude and thanks to you all. You will be always respected and remembered your support on the inner core of the heart.
                                        Challenges faced

·         Increasing enquiringly the hostel increases the waiting list of the children belonging to nearby districts.
·         District level environment not favorable to directly fund ADC on the service delivery
·         Provision of the developmental like standing frame, CP chair and corner seat is very much required during the rehabilitation and also for the home use. These devices are available at the rehabilitation center at other district which is almost 100 km far. On the hand cost for each of these devices is not lesser than NPR 2500 which is not affordable by the family members.
·         Continuous festival holidays, elections and unexpected strikes hampered the productive hours of ADC in the month of October and November.
                                            Lesson learn t:

·         Counseling is seen as very much productive methodology to convince and ensure the participation of the family member at the process of participatory rehabilitation of the children with disability
·         Involving the family members at the process of goal setting of their children increases their contribution towards the achievement of the goal in time. This has resulted the good support being received by the children with disability from their family members.
                                 Key priorities for coming quarter

·         Conduct the meeting with local level authority for the funding provision of required developmental aids
·         Request district level disable people organizations and women children office to conduct the social audit of ADC through their visit and consultations with family members of children with disability.
·         Establish the referral system with Mid-western regional hospital (government of Nepal). This will also help to identify if any other medical intervention is required. The government of Nepal has a provision to provide free medical service(doctor assessment, medicine and some surgeries) to people with disability upon producing the disability card

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