What we do
Nazari Digar works with local communities in Eastern Europe, Central Asia, Tajikistan, Afghanistan and the UK

Mission

To enable people with Down’s Syndrome (DS) to live fulfilling and active lives

Health

Parents, family members, health workers and people with Down’s Syndrome have the knowledge and attitudes needed to understand health issues, have access to professional services and equipment, and are engaged in taking proactive measures to stay healthy and to resolve problems as they arise.

Learning and Trainings

People with Down’s Syndrome have access to activities that support their personal development, improve their communication abilities, provide them with skills for working, keep them active and support their education.  That parents, family members and professionals have access to training materials and training that support the development of people with Down’s Syndrome.

Family support

Parents and family members of people with Down’s Syndrome are supported, empowered, celebrate the achievements of people with Down’s Syndrome, and have access to the equipment and specialists that they need.  That those children without parents, living in institutions, are also supported.

Inclusion

People with Down’s Syndrome are able to take an active part in an inclusive society, whether at nursery school, school, in the workplace and in general life.  That people with Down’s Syndrome feel loved in a supportive and caring family environment.

Awareness and acceptance

Society is aware, knowledgeable and supportive of the positive and fulfilling lives that people with Down’s Syndrome can live.  That provision of support from government, institutions and civil society is properly targeted.  That people with Down’s Syndrome and their families don’t feel shame or blame, but instead feel confident in their community and wider society.

Parents, family members, health workers and people with Down’s Syndrome have the knowledge and attitudes needed to understand health issues, have access to professional services and equipment, and are engaged in taking proactive measures to stay healthy and to resolve problems as they arise

What we have done so far:

Medical checks:

Heart: Children and adults with DS never have gone heart check once when they were born, and if they didn’t have congenital heart disease at birth, they never went back to check their heart or even those who have CHD did not go on annual checks. Only 3 of them out of 80 wear glasses, and even these children did not check their eyes regularly.

  • 85 children did the Ultrasound of the heart
  • Out of them 14 children have Congenital heart disease
  • So far, one surgery was done in Moscow, 1 in Khujand and 1 soon will be done in Tashkent
  • For 2 children it is already too late to do the operation

Some parents refuse to do heart surgery for their children (because of the fear that their child will not come out alive after a surgery.

 
 
 

What we have done so far:

Thyroid tests: Children and adults with DS never have gone through thyroid levels checks because of the lack of awareness that they need to check thyroids. The oldest adult is 23 years old.

  • 80 children did blood tests for thyroid levels
  • Majority of children as a result of the test have seen endocrinologist
  • 26 children had been identified with the issues of thyroid levels (35%)
  • 17 children went through Ultrasound of their thyroids
  • Out of the 17, 4 have goiter issues
  • The rest of the children (13 children) have active thyroid levels.
 
 
 
 

What we have done so far:

Vision: Children and adults with DS never have gone the eye check. Only 3 of them out of 80 wear glasses, and even these children did not check their eyes regularly.

  • 80 children went through vision check (ophtolmologist)
  • One child had a cataract of his eyes, we have done surgery to his eyes
  • 45 children need to wear glasses (54%)
  • Nazari Digar have bought glasses for all children from the UK and Dubai (special frames for kids with DS)
  • Children have various types of eye illnesses and will be checking their eyes on 6 monthly and annual basis.
 
 

Hearing: There is an urgency of checking hearing of children and adults with DS in northern Tajikistan but because of the lack of the hearing equipment to check hearing, we could not do it. We are looking into inviting specialists from Uzbekistan to come to Khujand with their equipment and conduct hearing tests.
In the near future we are planning to help fundraise and buy hearing equipment for children and put it in one of the main policlinics Khujand, in rehabilitation center for disabled children. In this way all children (not just children with DS) can check their hearing for free

People with Down’s Syndrome have access to activities that support their personal development, improve their communication abilities, provide them with skills for working, keep them active and support their education.  That parents, family members and professionals have access to training materials and training that support the development of people with Down’s Syndrome

What we have done so far:

Training for parents

More than 15 trainings have been conducted to mothers of children with Down syndrome on psychological support, wellbeing, financial literacy, sewing and baking skills.

 
 
 

Individual assessment (multidisciplinary)

  • 75 children went through multidisciplinary individual assessment
  • Four specialists assessed them: paediatrician, children’s psychologist, physiotherapist and speech therapist.
  • Individual development plans were developed for each child with targets and milestones to achieve

The next assessment will be conducted starting in May 2020

 

Speech therapy

22 sessions were conducted.

8 children are taking regular (weekly) individual one to one therapy.

We plan to increase the number of speech therapy for more children, because therapy has number one urgency for kids.

 
 
 
 

Psychologist

22 sessions were conducted so far.

8 children are taking regular (weekly) individual one to one therapy.

We plan to increase the number of speech therapy for more children, because therapy has number one urgency for kids.

 
 
 

Art therapy

The most popular session among children is art therapy. We are discovering new talents and children every week look forward for their art therapy session.

42 sessions have been conducted on weekly basis.

 

Musical therapy/doira

Musical therapy or doira (traditional Tajik drums instrument) is very popular among adults with DS.

So far 36 classes were conducted on weekly basis. Adults with DS performed for the first time in 3 concerts so far. This is the matter of proper inclusion in Tajik society.


 

Gymnastics

This is one of the popular classes but unfortunately because of the lack of the instructor we could not continue it. But we are seeking to find one.

So far 20 sessions of gymnastics have been conducted.

Parents and family members of people with Down’s Syndrome are supported, empowered, celebrate the achievements of people with Down’s Syndrome, and have access to the equipment and specialists that they need.  That those children without parents, living in institutions, are also supported.

What we have done so far:

Psychological support to mothers via group counselling sessions by specialists of Women’s Center Gulrukhsor was conducted.

Psychological trainings to mothers via US Embassy Alumni project was conducted by professional psychologist. (photo)


 

People with Down’s Syndrome are able to take an active part in an inclusive society, whether at nursery school, school, in the workplace and in general life.  That people with Down’s Syndrome feel loved in a supportive and caring family environment.

What we have done so far:

Inclusion work is being done on regular basis. We have conducted our first inclusive summer camp in June 2019 where 20 kids and their with DS took part among other children.

One of the wonderful example of inclusion was when adults with DS for the first time in the history of Tajikistan were included on equal basis to perform among 100 other professional doira students.

 

Society is aware, knowledgeable and supportive of the positive and fulfilling lives that people with Down’s Syndrome can live.  That provision of support from government, institutions and civil society is properly targeted.  That people with Down’s Syndrome and their families don’t feel shame or blame, but instead feel confident in their community and wider society.

Awareness raising campaigns are have done on regular basis. There are many campaigns on social media, flashmobs. #баманхечкаснагуфт #мырядом #nobodytoldme

What we have done so far:

• Talk shows on local TV station CM-1
• Social adverts
• Participation at Safina etc.
• Articles with links (photos and text)