Parents and their children with a disability  are united in a parents group

Step 1: The Start 

Via a start meeting and call for proposal from the Ministry of Social Development (MoSD) in the Province (in different phases), Palikas are invited to submit a proposal for the DPRP. Plans are developed together with all local stakeholders with support of Karuna staff. All are assessed by the DPRP Directive Committee in the MoSD, on their interest, willingness towards the program and necessary budget allocation in the Palika, as described in the guidelines. Subsequently, agreements are signed between Karuna Foundation Nepal and the Palika – as endorsed by the Provincial Government – for their 3-year cooperation: the first two years Karuna provides financial and technical support and the third year only technical support. Local DPRP Management Committees are formed per village (ward). Karuna provides training to local leaders and health officials on the DPRP principles and approach.

Step 2: Preparations

The Palika will select and appoint the Community Based Rehabilitation Facilitator (CBRF). This CBRF, who has a background as midwife or an auxiliary health worker, is an inhabitant of the village (if possible). It is a new post and salaries are paid by the Palika (as part of DPRP budget). These CBRFs are trained by Karuna (three months program with accredited course). They go from door-to-door, identify all persons with a disability, make sure they receive an ID-card and develop an individual care plan together with their family members and a multi-disciplinary team including medical professionals and therapists. In the Prevention Program, Karuna gives training to local health workers and the ‘Female Community Health Volunteers’ (FCHV) on causes of birth defects, stunted growth, disabilities and how these can be prevented with a set of evidence-based interventions. They are also trained in the M-Health program: a messaging service for ante and post-natal check-ups, which is part of the prevention program of the DPRP. At least one birthing centre and one physio centre per Palika are equipped with instruments and health workers are trained.

Step 3: Implementation

The prevention program.

Health workers give extended service to (pregnant) women and young mothers with a.o. “the best wishes card”. Just married women (couples) receive folic acid. Via M-Health, all women are registered, and messages are sent to attend the four ante and three post-natal check-ups. Also, FCHV’s make sure the women will get professional support via institutional delivery in the newly upgraded birthing centres. The health workers and FCHVs, equally, reach Married Women of Reproductive Age with information on reproductive health directed towards disability prevention.

The CBR program

The CBR Facilitator, together with parents or caretakers develop rehabilitation goals for each person with a disability, supported by experts of the Karuna team. In line with the goal, the CBRF and family together organise care and medical treatment (see below). The CBR will help children to get ready for school (those who can go), try to find alternatives i.e. home-based education for those who can’t and organises inclusive child clubs. Together with DPOs, self-help groups (with capital out of the DPRP budget as a part of program and occasionally provisions by others) are started for persons with a disability or their family members to generate a source of income and give them access to social life. Skill development and/or vocational training are also part of the DPRP program. Cooperation with other NGOs, hospitals and schools is initiated to strengthen the care.

Step 4: the exit and continuation

After two years Karuna stops the funding in a municipality. The program will be continued under the responsibility of the municipalities with funding of Municipalities and Provincial Government (50-50 cost sharing). The budget per municipality differs, as their plans differ (see details under ‘funding’). Karuna offers one more year of technical assistance. During the 3-year presence, Karuna will constantly organise support and refresher training programs for CBRF’s, local health workers, schoolteachers and local leaders to make sure all are well equipped and motivated to continue the program after Karuna leaves in 3 years.

Below we further explain a number of interventions

Best Wishes

Best Wishes are conveyed to newly married couples and pregnant women respectively. Two different cards designed for both groups are issued by the Female Community Health Volunteers (FCHV) and/or mid-wives. These cards provide Best Wishes and useful information relating to family planning, nutrition including peri-conceptional folic acid, STIs, etc. and their relation to the prevention of birth defects. All information is shared via pictures and graphs to make it understandable for all. The Best Wishes card also encompasses messages on care during pregnancy, danger signs, and services by the government for pregnant and women who recently delivered. The card provides space to track the services taken by each pregnant woman (verified by FCHV and ANM) which is also validated by the M-health system.

The Medic Mobile Health system

Each FCHV gets a mobile phone and they register pregnant women, sending mobile message to the system. After the registration, the system sends reminder messages to the FCHV to send pregnant women for ANC visit, iron, folic acid and calcium tablet consumption, TD vaccine, institutional delivery and PNC of that pregnant women. After each reminder message, FCHV meets the pregnant woman and sends her to the health facility for check-ups. Karuna cooperates with the organisation Medic Mobile Nepal, who develops software for the messaging and data management system, provides training to Karuna staff and health workers and helps to cover the gateway phone costs and necessary materials. Medic Mobile is a non-profit organisation whose mission is to improve health in the hardest-to-reach communities. They are known for building open-source software that supports health workers in delivering equitable care through tools and apps that help health workers ensure safe deliveries, track outbreaks faster, treat illnesses door-to-door, keep stock of essential medicines, communicate about emergencies, and more. They are currently working in 15 districts of Nepal and 14 countries across Asia and Africa.

Awareness and health screenings

Local health workers orient the ‘Golden 1000 Days’ mothers on the importance of nutritious food. The period of 1000 days between a woman’s pregnancy and her child’s second birthday is a critical window for the development of a child. Good health and nutrition can mitigate the risks of poor physical and cognitive development, that can create disabilities. Hence, as a major part of the prevention program, this golden 1000 days screening reaches hundred-thousands of women even in the most marginalised communities.

Moreover, a school health screening program is organised via screening camps at the primary schools and cover children of 4-10 years. In addition, CBRF’s ensure that children below four years also visit the camp and/or the local health facility. The screening is conducted by the local health workers with a focus on untreated eye problems, ear problems and malnutrition An orientation and screening protocols have been developed for this purpose. Children with identified problems are referred to health centres for early interventions and follow-up.

Birthing centres

In order to improve the options for institutional delivery in each municipality, Karuna will support the establishment of one well equipped birthing centre per Palika with an ultrasound machine and organise training. Ultrasound services will help to:

• Provide good quality maternal services;
• Attract more women to birthing centres, which can result in increased utilisation of other health services as well;
• Reduce time and resource of pregnant women and their families, as ultrasound services will be available nearby;
• Increase trust by pregnant women towards maternal health services (research has shown that women perceive ultrasound to be of significant value for reassuring the health and progress of the baby).

The government of Nepal has prepared a 21-day training package on rural ultrasound. The nurses from the selected birthing centres will receive this training. These centres fall under the jurisdiction of local governments and will be managed by the local governments themselves. Once the ultrasound machines are handed over to the municipalities, the maintenance and repair of the USGs will be the responsibility of the local governments. A protocol will be developed on the use of ultrasound machines and referral mechanisms following diagnosis. Other legal aspects will also be covered such as prohibition of its use for sex determination of the foetus to prevent female feticide. There is a pre-existing mechanism of the government to refer complicated pregnancies to higher centres/hospitals that have Basic or Comprehensive Emergency Obstetric and New-born Care (CEONC). The emergency obstetric care services include assisted delivery, antibiotics for maternal infection, drugs to prevent haemorrhage, removal of retained placenta, caesarean section and blood transfusion.

The Right to Safe Motherhood and Reproductive Health Right (2018) defines pre-birth disability as one of the conditions in which a woman can legally terminate her pregnancy if it is up to 28 weeks of gestation. Terminations after that are illegal.

The number of CBRFs in a Palika is determined by topography: 1 CBRF per 300 persons with disabilities in the plain regions (Terai), 1 CBRF per 150 persons with disabilities in the hilly regions and 1 CBRF per 100 persons with disabilities in the Himalayan regions.

Like other activities, the costs of both physio and birthing centres will be shared by the Provincial Government, the Municipality and Karuna. Both are expected to help improve the quality of care and are incorporated in the program on urgent requests of mayors, local leaders and provincial health officers.