• About Self-help Group for Cerebral Palsy

      The Self-help Group for Cerebral Palsy, Nepal, is a non-governmental and non-profit organization fully committed to helping children and adults with cerebral palsy and to providing emotional and practical support to their parents. The group, established in October 1987, is a team of medical professionals, university teachers, parents of disabled children and social workers with a common desire to improve the quality of life of people with cerebral palsy. SGCP is an associate organization member of International Cerebral Palsy Society, London.

      Though initiated with 6 cp cases in the fiscal year 1986-87 with acute technical constraints and no resource whatsoever SGCP as the only NGO of its kind could grow and develop at its own rate to the satisfaction of hundreds of cp cases and their parents living in different communities of many districts of our country.

      Besides continuous implementation of the above programmes we have been able to purchase nearly 9 ropanies of land at Dhapakhel, Lalitpur. An access road to the land has been constructed and a building for CP Rehabilitation Centre completed in 2005 and is fully utilized for CP Rehabilitation Centre. Special Education Programme has temporarily been housed in that building. A separate building for Special Education Programme (SEP) is under construction which we intend to complete within seven months. Moreover, SGCP has grown technically and it has the capability to upgrade the technical skills of its personnels. Since a couple of years a new responsibility to conduct short term trainings and camps has been added.


    • Profile of the Self Help Group for Cerebral Palsy

      The Self-help Group for Cerebral Palsy, Nepal (SGCP), which is also popularly known as CP-Centre, is a non-government and non-profit organization established in 1986 to help children and adult with Cerebral Palsy (CP) and to provide emotional and practical support to their parents. With its establishment, in order to provide care, comfort and relief to the children and adults with CP for the improvement in the quality of their life, SGCP has been providing medical facility, counselling, therapies and special education programs and other necessary support to the parents and children at its centre and through home visits.

      SGCP is an associate organization of The International Cerebral Palsy of Society, London. SGCP, being the only organization of its kind in Nepal exclusively dedicated in the rehabilitation of people with CP, also collaborates with other partner organizations and agencies for the benefit of the CP families throughout the country. SGCP has the following broad objectives:

      • To help children, youth and adults in physical and/or mental disability conditions due to cerebral palsy to lead a simple life and to be self-reliant through appropriate treatment.
      • To provide emotional support to the parents of children with cerebral palsy and to motivate them to provide appropriate help and services to their dependent children on a long term basis.
      • To rehabilitate all those cases afflicted due to cerebral palsy through the proper use of available community resources by maintaining close rapport with the parents.
      • To conduct training to produce human resource necessary for providing appropriate treatment and rehabilitation services.
      • To develop this institute as a resource centre for cerebral palsy.
      • To build public awareness through publicity of ways for prevention of cerebral palsy and reading materials on cerebral palsy.
      • To utilize knowledge and skills gain from the research findings of international research agencies and associations.

      Organization and Management

      SGCP has been running various programs for CP children and their families under the three major Program Sections/Units (see Chart 1 for the Organization Structure of the SGCP):

      1. Cerebral Palsy Rehabilitation Centre (CPRC),
      2. Special Education Program for the children with CP (SEP), and
      3. Home based support in Kathmandu Valley (Home Visit Program – HVP) and in districts (Out-reach Program –ORP).

      These three technical units of the SGCP are supported by an Administration/Finance Section. SGCP also conducts trainings and awareness activities for various target groups. Mobilization of parents and community has just been initiated.

      Chart 1: Organisation Structure of the SGCP


      SGCP Board

      With necessary support from a total of 48 professionals and support staff at central level, SGCP's programs are run under the management of a Chief Executive Officer (CEO). SGCP Board consisting of eight members provides policy guidelines to the CEO. The present Board members are medical professionals, university teachers, parents of differently able children and social workers.

      At present, home visit (in three Kathmandu Valley districts) and outreach programs (outside Kathmandu valley) are running in 16 districts (Table 2). With one home visitor in each district, SGCP has a total of 61 staff (HVs in three Kathmandu Valley districts are considered as central staff). The home visit/outreach program districts are:

      Table 2: SGCP Service Districts


      Dadeldhura

      Palpa

      Bhaktapur

      Dhankuta

      Banke

      Tanahun

      Kavre  

      Sunsari,

      Dang

      Nawalparasi

      Sindhupalchok

      Jhapa,

      Kapilbastu

      Kathmandu

      Ramechhap

      Taplejung

      Rupandehi

      Lalitpur

      Morang

       

      SGCP has been receiving experts and volunteers from different foreign countries who provide either training to SGCP staff or support CP children and families in a number of ways including medical treatment, therapy and counselling. In the year 2008, SGCP had received service of 60 volunteers and in the year 2009, by the end of October 52 volunteers had provided their services. The volunteers visiting SGCP are coordinated by ORP/HV Section.

      Service Mechanism

      This section describes the service and functioning of the three technical programs/units of the SGCP.

      The Cerebral Palsy Rehabilitation Centre (CPRC)

      Started since 1990 CPRC is one of the key programs of SGCP. It has two service centres; one in Babarmahal, Kathmandu, and the other is in Dhapakhel, Lalitpur. The service centre in Kathmandu, with a group of professionals, is actually the out-patient clinic which provides counselling service, emotional support and advice to the parents of children with CP, together with necessary therapeutic (physiotherapy, speech-therapy and occupational-therapy) and medical services to CP children. It also supports parents of children with CP with the provision of necessary training covering practical therapeutic skills and technical knowhow. Training of field workers from various organizations in relation to rehabilitation of children with CP is also a part of this centre's regular service.

      Parents and their children with CP who visit the Centre with the recommendation, reference or information from a hospital, an NGO, a professional or even a friend are consulted and examined, depending upon the case, by the Counsellor, medical Doctor, Psychologist and Therapist. After due assessment of the case by the concerned professional/s, a harmonized treatment plan is prepared for each case in coordination with everybody involved in the assessment and then relevant services of SGCP are provided accordingly. CPRC also works closely with hospitals and clinics for early assessment and interventions to the children with CP.

      Special Education Program (SEP) for children with CP

      This program was launched in 1993 and at present it runs at Dhapakhel in its own building. The aim of this program is to help children with CP for the quality improvement in their lives to become more independent with the acquisition of knowledge and skills equivalent to primary education level. As per the individual plan developed taking care of each child's ability and capacity, this program focuses on individual work, group work, communication and life skills, creative activities, and play together with the necessary cognitive activities suitable to each child's level accompanied by physiotherapy as needed. Often goals are set in consultation with parents, which triggers intensive interactions through home visits by staff and programme visit by parents.

      At present this program has a capacity to accommodate only 36 children and the SEP classes are conducted by specially trained teachers with the necessary support of physio-assistants and helpers. One of the main focuses of this program is to integrate children with CP to normal schools, special schools and vocational schools or send for income generating activities, as much as possible, depending upon their conditions, after they have acquired necessary knowledge and skills.

      Home Visit (HV)

      Home Visit is the first program of SGCP started with its establishment. Originally HV attributed to activities only in the valley, but now the same approach has been effectively extended to 13 districts of the country and is widely known as Outreach Program (ORP). In the HV program a home visitor helps children with CP by visiting their respective homes within one's working area.

      The HV is a follow-up service provided by trained home visitors of SGCP to children with CP that have been counselled, assessed and helped at the CPRC and their parents from Kathmandu Valley. The aims of this program are:

      • to motivate parents to be steady in their efforts to provide comfort and support to their children with CP
      • to involve the parents in the rehabilitation process
      • to give correction to the therapeutic exercises done by the parents as necessary
      • to provide emotional support to parents
      • to be well acquainted with the home environments of children with CP
      • to carry advocacy activities
      • to refer necessary cases to CPRC or other concerned institutions

      With the extension of SGCP's service to other districts of the country apart from the three already existing in the valley, it started Out-reach Program (ORP) in 18 districts in 1996. However, at present ORP is limited only to 13 districts. Under this program a trained home visitor in each district provides services to children with CP as per their monthly plan. Apart from usual therapeutic exercises for the children and necessary counselling and instructions to the parents for the continuity of the therapy to their children in home visitor's absence, a home visitor also develops equipment and assistive devices from locally available materials to support the children with CP.

      As per their monthly plan, home visitors in the districts also carry on with the door-to-door support in providing early intervention and meeting the special needs of children with CP, making the parents less dependent on the therapists and raising awareness about cerebral palsy in the community. Home visitors also work in collaboration with local Non-Government Organizations (NGOs), Community Based Organizations (CBOs) and Government Organizations (GOs), especially the health related organizations in the districts depending upon their availability and networking them for the cause of CP interventions, such as organizing camps. Apart from this, home visitors are also engaged in activities that strengthen parents and community, by involving them in income generation activities and literacy programs. And, as with the SEP program, one of the efforts of the home visitors is also to integrate the children with CP into regular schools, special schools and vocational schools and see for their smooth integration in the home, family and community. Nevertheless, for specific needs of any child with CP, home visitors also refer them to SGCP, at the centre or other institutions.


    • Target Group

      Cerebral palsy being a childhood disability caused due to brain damage during pre-natal, peri-natal and early infancy, children with cp suffers a great deal throughout their lives. This condition is usually accompanied by associated handicaps like epileptic fits, learning disabilities and other problems. It becomes much more complex in the absence of early intervention and institutional efforts for their treatment and rehabilitation. In Nepal, cerebral palsy cases and their parents are a much neglected group as there is not a single programme of cp rehabilitation in the government sector. The determined commitment of this organization to this target group of children and their parents (mothers in particular) is a human concern towards their quality of life.

      With the exception of mild cp cases, the moderate, severe and profoundly severe cases suffer a lot. Their suffering get enhanced when there is no help or treatment available. It is a reality in Nepal that most of the cp cases has no access to any help or support whatsoever as 57 districts of the country are without the most basic form of rehabilitative services for cp cases. Each case of cp is a unique one that needs specialized service or support on a long term basis. The gravity of the situation is understandable when children with cp in so many districts are devoid of any service unless they are brought to Kathmandu.

      No study on prevalence and incidence of cp has so far been carried out in Nepal. However, on the basis of the incidence of cp in advanced countries, which is 2.5 per thousand live births, and the extent of preventive health care accessible to children it is assumed that a minimum rate of incidence should be at the range of 3 to 5 per thousand for Nepal. Considering the population growth rate of 2.6 percent and the free play of the vicious circle of poverty, malnutrition and disability, the size of the target group should be big enough which obviously warrants a national level programme of cp prevention and rehabilitation as an inevitable part of national development efforts in Nepal.

      Self-help Group for Cerebral Palsy Nepal (SGCP), which is popularly known in Nepal as CP- Centre, is a non-governmental and non-profit organization established 22 years ago in Kathmandu, is serving children with cerebral palsy. The main objective of the organization is to provide care, comfort and relief to the children and adults with Cerebral Palsy (CP) through various interventions. In line with its objective SGCP runs a rehabilitation centre and special education programme as well as home based support programme to children with cerebral palsy and their parents. Being the only organization in Nepal, which is exclusively dedicated in the rehabilitation of children with cerebral palsy, SGCP collaborates with partner organizations and agencies through various means and approaches to attend and benefit the CP cases through out the country. SGCP is an Associate Organization of The International Cerebral Palsy Society, London.

      The CP Rehabilitation Centre of SGCP is located in the Kathmandu valley and provides counseling services, therapeutic services, medical services, training of parents as well as training of field workers from various organizations in the field of rehabilitation of children with cp. Physiotherapists, occupational therapists, councilors, and pediatricians are engaged in the centre. The centre provides support to over 700 cp cases annually. Recently, a mobile service was set up that organize assessment camps across the country. In 2010 the centre assessed over 450 cases in various parts of the country. A full time Residential Doctor in the centre since 2010 is great advantage.

      Special Education Programme for children with cp was launched in 1992. As far as possible they are integrated in normal schools or send for income generating activities after they have acquired required knowledge and skills through special education programme of SGCP. In this programme there are classes with total capacity of 40 children at the moment.

      In the vocational training 12 young adults are engaged at this stage. Annually this programme costs Euro 35,000.