Месяц: Март 2021

Last week, under the framework of the COVID-19 appeal to help children with Down syndrome (DS) in Tajikistan, the Public Organisation ‘Nazari Digar’ conducted a charity campaign in the rural area of the district Devashtich (Gonchi) – where we provided monthly food packages, vitamins, masks and disinfectants to the families of children with DS. Now we want to continue to tell you about our children and their families. 

In Devashtich, a remote village called by locals the ‘uzbek kishlak (village)’ lives the lovely boy Shuhratzhon, who has DS. He is 15. I remember how I got to know his mother back in August 2019, at the parents’ forum of children with DS in the northern part of Tajikistan, which was organised by Nazari Digar. 

One woman approached me during the workshop break and started to talk to me. At first I couldn’t understand what she was saying, but soon realised that she had a severe speech impairment. After our first chat I started to get to know this lovely family better, and I have been in touch with them over the last 7 months. Shuhratzhon’s father has a disability as well; he is deaf. Neither of Shuhratzhon’s parents is able to work, as there isn’t any appropriate work for them in the small, remote village. They live on very small disability allowances, and thankfully their family help them whenever they can. 

This year, Shuhratzhon is graduating from school which is called ‘special school’ in Tajikistan but it is a closed state institution where children with disabilities reside (they attend it from the age of 7 to 16) in Khujand. Shuhratzhon’s mother is very worried about his future: ‘Where will my son go after he leaves this school? What will happen to him? What kind of life he will have? Will he find a job and be employed?’. His mother is concerned that Shuhratzhon does not know the alphabet or numbers; he cannot write or read. During all these years in a closed institution he didn’t learn any of this, and she is lost and doesn’t know how to teach him…she was seeking me for advice and help. 

Children with special needs are very sensitive, especially when they have parents who have disability as well. What do the parents of children with Down syndrome feel, when they themselves have a disability…when they themselves cannot find employment but they somehow have to take care and support their children with special needs for the rest of their lives – especially in the given the context of Tajikistan? For children with DS, there is nowhere to go after they graduate the state institution at the age of 16. None of the vocational colleges admit them…

At the moment, Nazari Digar is developing a special program to help families who have children aged 16 upward. We are researching this issue and finding solutions on how to support teenagers and adults with DS, and we are also closely looking into the employability of people with DS in Tajikistan. 

Shuhratzhon’s mother approached me several times due to the coronavirus spread in Tajikistan, and asked for help. She said since they live in such a remote village no other organisation has reached out to them. Shuhratzhon and his mother were extremely thankful for all the food, vitamins, masks and disinfectants they received. They were grateful that even though they live so far away, the team of Nazari Digar did not forget them and delivered nutritious food packages and vitamins. Please support our families by donating to our COVID-19 appeal. 

In the UK parents of children with disabilities, working in close partnership with professionals, have played a strategic role in child disability policy since the 1960s. HealthProm supports parent-led civil society organisations in Ukraine to have a similar impact. From 2016-2019, with grants from the EC, UNICEF and UK FCO, HealthProm led an initiative to mobilise parent leaders in ten regions to advocate for vital policy change and the development of services to support families at the earliest stage in their children’s lives. Working closely with our local partners, the Charitable Foundation Early Intervention Institute and the National Assembly of People with Disabilities in Ukraine, we strengthened the capacity of parent organisations to voice their personal experience and the need for evidence-based policy, build strategic partnerships with key allies and regional governments, run advocacy campaigns and build a national platform for change, the All-Ukrainian Parents Forum for Early Intervention. 

During this phase of our work, parent organisations in two regions achieved formal commitment to the development of Early Intervention (EI) services, and in all regions parent advocacy for change continues. One of the EI services that has resulted from their efforts, in Vinnitsiya region, is now (in the context of Covid-19) providing online EI support for families, backed by in-service online staff training and mentoring from our partner, the Charitable Foundation Early Intervention Institute. Five early-stage services in Kharkiv region are being similarly supported, and in Luhansk, one of the two regions most affected by the conflict, a new parents’ organisation, formed during this phase, has since persuaded the regional capital authorities to fully fund an Early Intervention service previously delivered part-time by volunteers. The potential transformative impact of parent advocacy has been recognised by the Human Rights programme of Open Society Foundations, which has awarded five two-year grants to parent organisations to continue their efforts to work for an inclusive society in Ukraine.

Local partners: Charity Fund Early Intervention Institute, Kharkiv; National Assembly of People with Disabilities

In September 2013, HealthProm was awarded a grant from the Big Lottery Fund to expand its work in Kyrgyzstan, with a particular focus on the prevention of institutionalisation of children with disabilities.

We did this through strengthening community-based services that support children with disabilities and their families, improving access to education by enabling local Day Centres to provide pre-school educational programmes, strengthening capacity for advocacy through regional and national information exchange and training, and raising awareness of the need to integrate children with disabilities within local communities.

Working with our local partners, we helped to develop a network of community-based support across seven regions of Kyrgyzstan. Through this network, we provided support for over 1,000 children with disabilities and their families. We also facilitated partnerships between Day Centres and local government, helping to promote a continuity of care between different social services in the regions where we operated.  
 
Local Partners: Kelechek Plus, ICCO, Uplift

HealthProm has been working to promote health and reduce maternal and under-5 mortality in mountain villages of Balkh Province since 2008.  We do this through a holistic approach that improves access to health care, clean water and better nutrition.

Our Afghan partner NGO, HADSO, works through village safe motherhood groups and men’s groups to raise awareness of the specific risks of pregnancy and childbirth. It provides antenatal care and birth planning from visiting midwives, and emergency transport for women in labour to health centres. It also works to achieve longer-term gains in health by providing health education for girls and boys in schools.

Malnutrition and unclean water are major causes of child deaths in Afghanistan. HADSO enables families to grow better food for their children by working with villagers to plant new vegetable gardens and fruit trees, and channeling water to keep them sustainable. Together with village men, they have also built crop stores so they are able to hold their crops until prices rise. The sale of crops enables them to pay an increasing share of the cost of emergency transport for women in labour to health centres, contributing to the sustainable impact of this work.

The project has reduced maternal mortality to 11.3% of the national figure, and additional measures such as training community health workers to provide basic primary healthcare and administer simple interventions such as oral rehydration salts, has reduced child deaths even more. 

An independent technical reviewer for DFID’s UK Aid Direct recently wrote that HealthProm had successfully implemented its last DFID grant in Afghanistan:

…in such a manner that it has become an exemplar for many other organisations and received global attention.

The next challenge is to take this successful model to another district of Balkh province and achieve similar results at greater scale.

Local Partners: HADSO, Bakhtar Development Network, Provincial Directorate of Public Health

In Tajikistan, we support the transformation of social services for vulnerable children and their families, and help to turn the tide away from the containment of young children in institutions towards community care with families.

HealthProm has worked in Tajikistan since 2006. Our continuing work plan is to support families to retain care of their children so they do not place them in a Baby Home.

By 2016, we established Family Support Centres next to all four Baby Homes in the country. Our current project takes this one step further by supporting the Government of Tajikistan to transform the Baby Homes into community-oriented Family and Child Support Centres. 

Our strengthened family support services include better protection for children vulnerable to abuse and neglect, and more opportunities for alternative family care.
 
Highlights of our recent work include: 

• Halving the number of children living in Tajikistan’s Baby Homes.
• Strengthening families– both birth and alternative families– to care safely for their children in the community.
• Testing and delivering a model of outreach support to isolated families in rural areas of Sughd Province.
• Transforming the Baby Homes.  All the Baby Homes in Tajikistan have now been changed into Family and Child Support Centres.

We deliver this project in association with UNICEF Tajikistan, and through the skills and local knowledge of three Tajik Public Organisation Partners: Hayot dar Oila, Sarchashma and Iroda.
We also benefit from professional guidance and generous support from several UK partners: The Government of Scotland and Falkirk Council, The Fostering Network and Mellow Parenting.

We acknowledge with thanks the funding we receive from the European Union, the UK Department of International Development Community Partnerships Fund, Grand Challenges Canada’s Saving Brains Initiative, and many generous individuals.
 
Annual independent reviews of our work are conducted by the Centre for Excellence for Looked After Children in Scotland (CELCIS).  They are available below or in the Resources section of our website.

Next, we want to apply our family support model to transform care in the remaining two provinces of Tajikistan, and more widely in Central Asia.