Down's Syndrome Association of Uganda(DOSAU)

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About Us

MISSION

Working as a coordinating, facilitating and enabling body of and for Individuals, Institutions, Organisations and groups of persons involved in helping children born with Down syndrome, PWDs and the families they live in, in Uganda as a charitable, non- profit making, non-denominational but a Voluntary Non- Governmental Organisation limited by guarantee

VISION

To develop a capacity to identify, take care and serve the people born with Down syndrome, PWDs, and the families they live in at all level.

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AIMS

 To bring together all people born with Down syndrome,PWDs who have got learning disability and impairment of some sort purposely to have a common voice on support, care and promoting their rights and equal opportunity.

Registered Charity No.5914/3089 Incorporation No.43827

Address:-

DOWN'S SYNDROME ASSOCIATION OF UGANDA (DOSAU), KAMWOKYA EDUCATION CENTRE, OPPOSITE NORTHERN BY PASS ROUND ABOUT, BUKOTO KYEBANDO KAMWOKYA ROAD,P.O. BOX 20103, KAMPALA.UGANDA. Off.Tel.256-774970853 Mob:-256 745 970853,717703530, 751414567, 772641544, 772822885, FAX: 256-41-222562 E-Mail:-dosau2000@yahoo.com; sagwaya.dosau2000@yahoo.com Web site: www:idealist.org.Down's syndrome Association of Uganda (DOSAU)

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Down’s syndrome Association of Uganda (Dosau) is a National Christian based Organization formed 1999 and got registered year 2000 as a non- profit making, non- denominational but a Voluntary Organization limited by guarantee.

Down’s syndrome Association of Uganda (Dosau) is a charity organization founded with a vision of identifying, caring for and serving people born with Down syndrome,PWDS and helping the families they live in at all level.

The Association aims to bring together all people born with Down syndrome,PWDs who have got learning disability and impairment of some sort purposely to have a common voice on support, care and promoting their rights and equal opportunity.

<img src="http://www.ucarecdn.com/11deb103-b8f0-40ef-b05c-a1e9d90512a4/"><img src="http://www.ucarecdn.com/79cadd4d-905e-4c79-8a5f-3be738a9e111/-/resize/x458/">

Down’s Syndrome Association of Uganda (Dosau) was founded by five founder Members, the Association started with 35 Subscription Members , 20 children born with Down syndrome and 20 parents and relatives of people born with Down syndrome now the Association has registered 25,409 people born with Down syndrome 15,539 and  9,870 people with physical disabilities,& orphans because of Eastern and Northern Uganda war of cattle rustling and Kony’s rebels who also attacked the area, plus the continuing wars of cattle rustling in the areas up to date.<img src="http://www.ucarecdn.com/fa823f8a-ccf8-49fc-8242-6393bf71e459/-/resize/x458/">

The Association is a Member ship Association and now has 

287 Subscription Members and 25,876  ordinary members who are parents and relatives of people born with Down syndrome, physical disability, and orphans.

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The Association has 120 employed staff, 98 Volunteers who work for a short period and leave in places of Amuria, Lira, Otuke, Soroti, Mbale, Bukedea,Alebtong,Kaberemaido and Kampala, 564 School going children from the time Dosau started its operations in Uganda up to date buut due to lack of enough support others have dropped out. And yet Dosau has 1,664 Children School going who need Education and are not taken to schools nearby their parents.


The Member ship to the organization is open to ordinary, individuals, Intuitions, Organizations, Clubs,  Schools, Colleges and Universities and groups of person involved in helping people born with Down syndrome, PWDs and the families they live in, in Uganda.<img src="http://www.ucarecdn.com/4af937ff-84f0-4ecc-be45-0d6aed679821/-/resize/x458/">

Down syndrome is a genetic condition caused by the presence of an extra 21 chromosome resulting in the disrupt of growth of the developing baby. It is named after John Langdon Down the British doctor who described the syndrome 1866, the disorder was identified as extra chromosome 21 by Jerome Lejeune in 1959; the condition is characterized by a combination of major and minor differences in structure.  Often Down syndrome is associated with some impairment of cognitive ability physical growth as well as facial appearance; Down syndrome in a baby can be identified with amniocentesis during pregnancy or at birth.

  In Uganda people born with Down syndrome all have learning disability and impairment of some sort.  Children have significant hearing problem and problem with vision are even more common. Chances of developing thyroid disease, senile dementia and heart problems are relatively high.

Accurate figures of the number of people born with Down syndrome, PWDs who have learning disability and impairment of some sort have not been accurate.  It is in recent years when Dosau is attempting to record babies from 2 years up to 36 years born with Down syndrome, PWDs in Dosau operation areas in Uganda.

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The number of babies born with Down syndrome each year in Uganda is certainly high with probably 1 in 1000 of babies born have Down syndrome.  This occurs in families from all social, economic, cultural, religious and racial back ground.

People born with Down syndrome, and PWDs in Uganda are neglected by their parents/relative and communities because of negative attitude, cultural beliefs most of which are suspected to guilty, for example in most Ugandan tribes, producing a child with PWD is associated with witchcraft, sexual immorality, parents have not attended to the spirits of ancestors, a curse from God; hence calling for awareness intervention so that people’s attitude can change and include PWDS at all level.

Reluctance or unwillingness of some societies to integrate them in the mainstream of Education, Employment, Health, inclusion in policy decision making, conductive environment such as accessible building, toilets, geographical location, others are locked inside the houses, others who are to say something can’t be allowed to contribute because of the negative attitudes already developed; hence, found it necessary for general awareness so that they can know that disability is not inability.<img src="http://www.ucarecdn.com/0cfb2522-3f38-45dd-b24b-32f02525f6c1/-/resize/x458/">

The project is necessary to bring back all PWDs who have been bounded by poverty, staying  along streets begging, those who have no chance of sharing knowledge and skills with the rest of the members since they are perceived as useless people who can’t perform any activity, it’s against this back ground that made Dosau to come up with this.

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Down’s syndrome Association of Uganda (Dosau) trained mobilizers from different areas from Dosau operation areas.Down’s syndrome Association of Uganda (Dosau) has one vehicle as means of transport being used, the organization needs more means of transport to easy its activities, the organization lacks transport to help those in the field. ie Dosau lacks Bicycles to be used by the Mobilizers in the field, Motorcycles to be used by the Supervisors and Vehicles to be used by the Administration  to manage the operations around; here we ask the help from other NGOs, individuals, Partners to come in because Dosau is failing to do its duty well because lack of transport. The organization lacks Drugs for treating these people and families they live in, we lack wheel chairs for those who cannot walk, we lack spectacles for those who sight problems, we lack scholastic materials for those going to school and etc.

MISSION

Working as a coordinating, facilitating and enabling body of and for Individuals, Institutions, Organisations and groups of persons involved in helping children born with Down syndrome, PWDs and the families they live in, in Uganda as a charitable, non- profit making, non-denominational but a Voluntary Non- Governmental Organisation limited by guarantee

<img src="http://www.ucarecdn.com/222080ce-b919-4046-85ea-303c38c6bb1a/-/resize/x458/">


VISION

To develop a capacity to identify, take care and serve the people born with Down syndrome, PWDs, and the families they live in at all level.

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OBJECTIVE .1.

Identifying and addressing special concerns, needs, challenges of children born with Down syndrome, PWDs and  the families they live in at all levels.

The assessment exercise will be undertaken in the first phase in Dosau targeted districts to identify the real needs, concerns and challenges..

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Activities under this objective:

Understanding local community and more Members registrations in DOSAU targeted operation areas.  There will be registering of New Members who are parents/relatives of children born with Down syndrome, PWDs  plus registering of New Members who Institutions, Colleges, Individuals, groups of persons involved in helping children born with Down syndrome, PWDs every year.

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A survey on the concerns, needs and challenges shall be done by DOSAU staffs in the mentioned Districts of Uganda to generate information that will be used by the Association in Influence, Advocacy and Lobbying.

Soliciting for funds and fundraising activities will be done by the Association under the Fundraising Department throughout the 5 years to mobilize for the programmed work.

OBJECTIVE .2.

Facilitating information and strengthening of groups/Association of children born with Down syndrome, PWDs and the families they live in..

Opening of more of Dosau Branches depending on the availability of resources for the purpose by 2009-2017 and Dosau Resource Center to be build.


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Activities under this objective

Facilitate in holding of general Assemblies in DOSAU operation areas, the Assembly will be held every year.

Sensitization and awareness programmes in different disciplines such as Leadership, Management, Resource Mobilization, Strategic Planning, C.B.R, and Community Mobilization etc will be held in DOSAU operation areas.

OBJECTIVE. 3

To a raise awareness programmes on the needs, concerns, challenges an potentials of children born with Down syndrome, PWDs so that the Society can change the negative attitude towards them.

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To continue with awareness programmed to sensitize the general Public on the inclusion of children born with Down syndrome, PWDs..

Training of the Communities, Parents/relatives, and Decision makers on the importance of children born with Down syndrome will be held at least 4 times a year per District of Dosau operation.

A Stakeholders workshop will be held at least once a year in each District of Dosau operations.


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Activities under this objective

Registered Members of Dosau will be trained in HIV/AIDS Advocacy, Counseling, Care, and Support at least twice a year in Dosau operation areas.

Networking with Medical personals to offer medical services to children born with Down syndrome, PWDs and Orphans at least for 2 seasons in a year starting 2015.

Supporting and linking children born with Down syndrome, PWDs and Orphans to Education, Health Care, Nutrition and Livelihood support, this will be done only in Dosau operation areas at least 100-200 children born with Down syndrome, PWDs will be supported in Education, 50-100 Orphans also for Education and at least 200=300 parents/relatives will be trained in Basic Community Education to enable them do something for themselves in each District as the first face of 2015.

At least 2 Training sessions will be held in each District where children born with Down syndrome, PWDs and Orphans will be trained in employable skills and resource mobilization starting 2015

Media awareness programmes on the needs, concerns, challenges will be held in each District of Dosau operations will be carried out at least twice a year.

OBJECTIVE 4.

To improve on the on Social-Economic of children born with Down syndrome, PWDS and Orphans through supplying and facilitating them in Education, Healthcare, Nutrition and Livelihood.


Activities under this Objective

Arrange for parental testing (Pregnant Women) for the babies born with Down syndrome, PWDs will be carried at least three times in a year starting 2015 in Dosau operation areas.

Be link to Micro-finance Institutions and other lending bodies so as to boost their business as a way of self reliance starting 2015 this can enable both the youth born with Down syndrome, PWDs, Orphans and the relative or the families they live in can do some business by giving them loans from the Organization.

OBJECTIVE .5.

To act as a facilitating and coordinating body in producing information on all aspects of Down syndrome ,PWDs and the families they live in

Activities under this objective

Development of disability information, this is an on going activity that started in 2004, Date on, issues, concerns, needs, challenges, potentials ,education, health care, nutrition of PWDS and Orphans practicability in entrepreneurship will be computed, that shall be used for Lobbying and Advocacy.

Conducting Media programmes on economic, health care, education and empowerment of children born with Down syndrome, PWDs at least five time on Radio Programmes in Local languages will be conducted within Dosau operation areas for the next 5 year starting 2015 this can help in some areas where we have not reached but we can reach them through media.

 A research will be conducted on Down syndrome and PWDs in the Districts of Dosau operation areas that will be able to get information on the issues and Dosau will have to recruit research Officers with effect from 2015.


Achievements

Dosau has managed to identify and assess the needs, concerns and challenges of children born with Down syndrome, PWDs and Orphans plus the families they live in.


<img src="http://www.ucarecdn.com/cc9ecbde-570e-436a-a593-3d9327a42812/">

Dosau has successfully managed to Train Mobilizers who are implementing the Dosau’s activities at the grass root level in Eastern and Northern Uganda.

Dosau has successfully developed a five year strategic plan starting   2012-2017 whereby by that time all Resource Centres are equipped with all equipments to be used, houses for accommodation for the needy are already in place, Schools and Clinical Centres will be in place all this will be in each District of Dosau operations.

Dosau has already gained recognition from the Stakeholders such as Ministry of Health, Office of the President of the Republic of Uganda, Akwenyuttu Uganda, Bagavat Uganda, Rucida Uganda, Orungo Community Association, Down syndrome Association of London, Down syndrome Association of Ireland,  Down syndrome Society of Canada, Mother Elizabeth, Aga Khan Education Service. Uganda , Down Syndrome International, Down syndrome Society of Canada and etc.

Dosau has already groups of children as follows:-564 born with Down syndrome in number School going, 41 PWDs school going children supported by Dosau in different schools.





Dosau is happy that children born with Down syndrome, PWDS and the families they live in can be able to address their problems from individual level in Dosau operation areas and the general community.

Dosau is happy that children born with Down syndrome, PWDs and the families they live in can now access Education, Health care, Nutrition and Livelihood in Uganda Dosau operation areas and we wish to continue to other District which shall follow in our operations.

Dosau is Happy that Communities around  Dosau operations areas have been empowered with skills, knowledge and experience to do something for themselves, b’se what they need is to teach them how to fish so that they can go fishing by themselves.

Dosau is happy that at present it has project being run to sustain the Organisation activities i.e. Bee keeping project, Piggery keeping Project, Poultry Keeping Project, Goat keeping/ raring Project, Bull donation Project, Weaving Project, Fish keeping Project, Bricklaying Project, Education Project and Mixed Farming Project are to sustain  Dosau activities


DOSAU PROGRAMME WORK FOR THE NEXT FIVE YEARS

During the next five years, Dosau will continue concentrating on facilitating in forming and strengthening of Dosau disabled Association Groups/Associations at the District level in the following districts:  Kampala, Soroti, Amuria, Lira, Mbale, Gulu Wakiso, Bukedea, Alebtong  and open Branches in other new Districts as we have 100 Districts.

Dosau will focus on establishment of the concerns, needs, challenges and potentials of the children born with Down syndrome, PWDs and the families they live in to be used for Influence, Lobbying and Advocacy.

Dosau will network and coordinate with the government, other NGOs, CBOs and private sectors to include children born with Down syndrome , PWDs and Orphans in their programmes.

Dosau will focus on strengthening the full participation of children born with Down syndrome, PWDS and Orphans to equip them with knowledge and skills so as to be self reliant in managing their programmes more effectively and efficiently.

Dosau will focus on Influencing the Stakeholders by advocating for the rights and benefits of the children born with Down syndrome, PWDs and Orphans in all aspects i.e. Education, Health care, Nutrition, Economic empowerment and total inclusion at all level.

 EDUCATION

Dosau has already planned children born with Down syndrome, PWDs from 6 years to 18 years will continue benefiting in Primary education and from 19 -45 years will benefit from Vocational Training such as Craft making, Poultry, Brick Laying, Weaving, Bee Keeping, Goat Rearing, Mixed Farming, Bull distribution and behaving among other that will make them and their live independently in their day to day living, these is a continuing Projects which will not end Dosau has planned already in-come generating activities as follows:-

Bull donation to young people both girls and boys for ploughing, Fish, Goats, Pigs, Chickens, Honey, Weaving, Bricklaying this is for selling and is given to those born with Down syndrome, PWDs and Orphans, to generate money for them and the Dosau the Organisation. The Relative/ Parents are trained in Mixed farming Project whereby they are given seeds for planting so that in future they can produce the product, some for consumption and others to be sold, secondly parents/relatives are made to group themselves to form many groups and rotation contribution is done by Dosau to them and after one year or two for Dosau to them the group.

SHELTER

DOSAU has planned to start building houses for the youth aged 25-32 years houses in a nearby future so that they can learn living by themselves while being supported by the Organisation, all this is to start 2012 with the little funds we have, this starts from the Districts where Dosau has land and we are starting from Amuria District; here we request for any support from other NGOs worldwide to support on this Programme since we shall move slowly by slowly and step by step until we cover all the Districts of Dosau operations.

. Organization Challenges

Children born with Down syndrome in Uganda all have learning disability are neglected by their parents/relative, Institutions and Government institutions because of negative attitudes.  Their rights such as education, health care, psycho-social rehabilitation and counseling are not fully provided.

Others are physically harassed, beaten, locked in houses defiled, denied food, clothing due to the fact that others disturb by going for long calls (latrine) some of them are characterized by mental problems, they think they work is destroying their properties, make noise and move any how around the villages, this ended some of them affected with HIV/AIDS (sexual abuses).  The social- economical constraints limiting them from accessing the services such as education, health care, shelter, clothing, nutrition and mobility accessibility

All children born with Down syndrome, PWDs and Orphans plus the families they live in do not access enough Health Care, Nutrition and livelihood.

Children from 6-18 years old born with Down syndrome, PWDs and Orphans not all are taken to Schools for Basic education (Primary education) reason  is lack of funds from the organization.

18-30 years old born with Down syndrome, PWDs and Orphans not all are trained in Vocational Training Schools plus Dosau resource Centre also lack of funds and  30 – 50 years old who are undergoing recreative training activities within the resource centre lack facilities to use.

Here we request other Partners, NGOs Individuals, Colleges, Institutions, Churches and other groups of persons willing to support children born with Down syndrome, PWDs Orphans and the families they live in  to come and support Dosau activities.

 Parents/Relatives who are trained in Community Basic Education (something to do for themselves) are lacking a lot of materials.

We request for any support from our Partners, Churches, other NGOs, Individuals, Colleges, Institutions willing to come and support Dosau with challenges is facing.

 Though Dosau has planned that  Young people both girls and boys  born with Down syndrome, PWDs and Orphans, are TRAINED Weaving, Fish Keeping, Goats raring, Pig keeping, Chicken keeping (poultry), Bulls donation for plouging, Bee keeping and Mixed farming production; all this is shall be sold to generate money for them and the Organisation. Most of the Parents are trained Mixed farming whereby they are given seeds for planting so that in future they can produce the product some for consumption and others to be sold, the Organisation found it hard that the Bulls for distribution was not enough due few number of Bulls bought last year because of lack of money; these affected also all the Projects Goats where not enough, Chickens got sickness no treatment given and many died, someone set fire which destroyed many Bee hives, Flood destroyed all the food crops planted and the Pigs got sickness and many died; secondly parents/relatives who are made to group themselves to form many groups and rotation contribution is done by Dosau to them and after one year or two from them for Dosau, has a big challenges that this animals, birds and plants at time get sickness and money for specialist to come with drugs to treat becomes a problem and those given seeds especially their parents/relatives also get challenges i.e. long dry out, lot of rain and seeds affected by dangerous insects which hinders good production and at times the year goes without any product of good produce, ie 2011 there has been a lot of water and those of Mixed farming lost a lot crops got damaged from Eastern and Northern Uganda so the Organisation did not benefit.

BUILDING OF A RESOURCE CENTRE

Children born with Down syndrome, PWDs, Orphans and their parents/ relative deserve a permanent home whereby they can come and share ideas, study new thing for their development.

Now they have only grass thatched houses in Amuria District which are not good any one can come and set fire on them. Since in most of the parts of Dosau operation areas there is Cattle rustling and the Rustlers can do any thing possible. Dosau has bought land but lacks funds to start construction of the Resource Centres of Amuria and Gulu where there is land for construction of both the Centre, Heath Care and individual houses for these people born with Down syndrome, PWDs, Orphans

 WHEEL CHAIRS


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Born with Down syndrome and also having physical disability  is one of the challenges Dosau is facing towards the children born with Down syndrome they totally do not have wheel chairs and many don’t have wheel chairs which end their parents/ relatives carrying them for many years in Dosau operation areas. Though Dosau is trying to get Partnership with Wheel Chair Foundation and many others because at present Dosau has registered 9,870 people with physical disability who need wheel chairs and yet more are to be registered.

BEDDINGS AND CLOTHINGS

Because of the negative attitudes already in place by the parents/ relatives of children born with Down syndrome this children are not counted among the family members they go without clothing and beddings only those registered by Dosau put on clothing because they are monitored, majority of this children have no clothing and beddings, we are looking forward for any help from any Partnership with any organization to come in and help Dosau by supplying some clothing ,beddings, utensils or Livelihood in general.

HOUSE EQUIPMENT

The Parents/ Relatives of this children born with Down syndrome, PWDs and Orphans lack house properties b’se some of them the properties was taken during the war period between the LRA rebels or cattle rustlers since in some areas there is still Wars up to Now everything looted and taken so in general they need Livelihood.

SCHOOL BOOKS AND TOYS

The Schools this children study lack books both exercise, text books and Toys for them to use in Schools, that is why we need to build our own School and equip it with necessary School material, at present we have 1,664 children born with Down syndrome, PWDs all need education and all the materials, so we request any NGO to come and help Dosau in this section so that this children also see the future.

TEACHERS

The Teachers who teach these children not all are trained for special needy children so there is a big problem in handling these children from the schools they are studying. In Uganda we have only Kyambogo University who trains teachers for Special needy and these teachers are few to cover the all Country so we lack teacher though Dosau plans to have its own teachers by training them. We request any NGO to come and help Dosau from this field of supporting Dosau to train its own teachers in Uganda and to facilitate the programme.

OUT PUTS

Dosau has managed to identify and assess the needs, concerns and challenges of children born with Down syndrome, PWDS and orphans plus the families they live in.

Dosau has successfully managed to train the Mobilizers who implementing Dosau activities at the grass root level both Eastern and Northern Uganda.

Dosau has managed to have a good number of children born with Down syndrome, PWDs, others and orphans who are already in place and the families they live in.

Dosau is happy that children born with Down syndrome, PWDs can be able to address their problems from individual level in Dosau embarked areas;

The training of young people aged 15-32 will increase by 70%, many projects will be opened and run by the young people born with Down syndrome, PWDs and orphans.

OUT COME

Dosau has planned already in-come generating activities as follows:-

 Young people both girls and boys  born with Down syndrome, PWDs and Orphans, are given Weaving, Fish Project, Bricklaying. Goats, Pigs, Chickens, Bulls,  Bee hives for keeping and Mixed farming all this is to be sold to generate money for them and Dosau. Most of the Parents are trained Mixed farming whereby they are given seeds for planting so that in future they can produce the product some for consumption and others to be sold, secondly parents/relatives are made to group them selves to form many groups and rotation contribution is done by Dosau to them and after one year or two from them for Dosau.

. Since Dosau has registered about 4,000 young people both born with Down syndrome, PWDs, Orphans and the families they live in who are Parents/relative, brothers and sisters aged 8 - 40 years who are to be supported in Poverty eradication programme,Health Care, Nutrition and Livelihood where they are to be given Bulls for ploughing,Goats for raring, Chickens(hens) for keeping-poultry, Bee hive for keeping for honey, seeds for ploughing, pigs for keeping, Poultry Keeping, taught Mixed firming and etc.

Poverty among the young people born with Down syndrome, PWDs and Orphans aged 8 -40 will be solved right from the grass roots of Dosau operation areas, a mixed farming practices 150,000 in 100 Districts each  out of 103 Districts, animal rearing i.e. Bulls 45,000 in 100 Districts each, Goat raring 15,000, in 100 Districts each, Piggery 15,000 in 100 Districts each all out of 103 Districts,  Bee keeping 45,000 in 100 districts each out of 103 Districts and Poultry 15,000 in 100 districts each out of 103 Districts and 15,000 school going children in 100 District each out of 103..and 3,000 in 100 District each out of 103 Districts will receive training in sustainability programme  in each District , every year if Dosau gets enough funds and supported. Dosau resource Centres will also by then being build up and modernized.

 

Dosau is looking forward to improve its projects as mentioned below so that people born with Down Syndrome, PWDs, Orphans, PWDs and the families they live in can benefit from;

Dosau only depends on:-

·         Annual Membership fee

·         Subscription fee

·         Few Projects to generate its income

·         PROJECTS TO BE INPROVED

-     Bulls for ploughing to eradicate poverty

-     Sawing machine for those with disability

-     Goat racing for those with disability

-     Poultry/chicken keeping for those with disability

-     Piggery keeping for those with disability

-     Bee keeping for those with disability

-     Supply of seeds for planting for the parents/Relatives

-     Garden tools supply

-    Magazine production

 

If Dosau fails to provide this services there will be a problem to the young people born with Down syndrome,Pwds and Orphans plus their parents/relative, because they will lack health care, education, nutrition and livelihood, the community at large may also  loose trust with Dosau and the negative attitude may come back to this children again.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 












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