ToR for Research to identify the needs and barriers in the inclusion process of children with Down syndrome in schools

Terms of Reference

Research within the project “The right for inclusion of children with Down syndrome”, to identify needs and barriers of parents and education institutions among and in the process of inclusion in two regions: Pristina and Prizren.  


  1. Background


Established on  March 4, 2007, DSK is non-governmental organization, with status association, founded by parents of the children and persons with Down syndrome (SD).

DSK as a national, multi-ethnic organization, its mission is to increase the dignity of individuals with Down syndrome and their families.

DSK reached to mobilize 902 families and its member, to organize initiative about the promotion of the rights of individuals with Down syndrome and persons with disability, to provide professional services which affect the welfare and the improvement of the life standard.


DSK coordinated local coalition of eight (8) NGOs for person with disability, called OKTAGON. Down Syndrome Kosova is member of European Down Syndrome Association (EDSA) and Down Syndrome International, these two organizations includes individuals and organizations all over the world and engages to improve the life quality for individuals with Down syndrome in all over the world and to promote their rights for acceptance and inclusiveness.

During these years, DSK reached to build up cooperation with many state institution as Ministry if Education, Science and Technology; Social Welfare Ministry; municipality of Pristina; of Prizren; of Ferizaj; of Gjakova; of Mitrovica. Also collaboration with the Clinical University Center of Kosovo, Department of Genetics and Gynecology and private clinics and laboratory which operates in Kosovo.  


II.         Introduction


Down Syndrome Kosova Association/ o DSK, within the project “The right for inclusion of children with Down syndrome”, is seeking the services of a qualified independent research company to do a research about the needs and barriers that the families and the education institutions encounter during the inclusion of children with Down syndrome in regular schools.

The aim of this research is the reflection of needs and barriers that the families and the education institutions encounter among the inclusion process of children with Down syndrome.




III.       General information on the project


The inclusion of children with Down syndrome in schools is a chain process with many links, concrete, achievable, tangible and visible. Family and school give form and full meaning to the inclusion, which constitutes the path through which every child have possibilities and chances to be part of, to get included, to benefit, and to get educated in equal conditions.


Children with Down syndrome have some special education needs, they have much more in common with children with typical development. They will achieve more if they are included, accepted in the social aspect, benefitting in this way from the feeling of being part of the society.  The social recognition will have a deep effect of self- esteem and the identity of children with Down syndrome. 


As a result, from this point of view, the project for the inclusion and support of children with Down syndrome in schools treats all the factors that may affect directly or indirectly  the inclusion process and the development potential of children with Down syndrome.


The objectives of the project are aimed to identify children who are excluded from education system, to inform families for the rights for education, the acceptance and their support into school education system, provision of conditions  for equal and qualitative education, the development of a research to identify needs and barriers of parents and education institutions among and in the process of inclusion.


With the project the activities will be held in the municipality of Pristina and Prizren, because the high number of children with Down syndrome, and the target group will be children age 0-14 years old.



1. Identification and the support of children with Down syndrome in the education inclusion process 

  1. The empowerment of parents about the right for the education of children with Down syndrome



IV.       Scope


DSK is looking for a company to do a research about the needs and barriers that the families and the education institutions encounter during the inclusion of children with Down syndrome in regular schools:


  1. 25 education institution in the municipality of Pristina and Prizren

The aim of this research is the reflection of needs and barriers that the families and the education institutions encounter among the inclusion process of children with Down syndrome

The search will reflect on the improvement of services by the inclusive education institutions in these municipalities, schools and the improvement of specific services based on the needs. This research will be presented as a report in a round table.



  1. Description of the Services


The engaged independent research company will assess the following:

  1. Barriers and the needs of the families and education institutions among the inclusion process of children with Down syndrome.



VI.        Conclusions & Recommendations:



The research, which will be finalized as a report, have to present the conclusions based on facts. The recommendations have to be specific, measurable, reachable and relevant.  A table with recommendations have to be presented as an executive summary of the report.



VII.          Design and methodology


DSK will provide to the company information that is credible, reliable and useful. Further it should review all relevant sources of information including documents prepared during the preparation phase.

The research will be done through questionnaires, interviews and the analysis in the field, and will include parents of children with Down syndrome and the schools management. The preparation of these materials will be done by the company, with the approval of DSK. The categorization of the data will be based on the age group, sex and the location. 


VIII.     Expected Output


The research report will contain:


  1. Cover page
  2. Table of contents
  • List of abbreviations and acronyms
  1. An executive summary (max. 2 pages). This should be able to be used as a document in its own right. It should include the project objectives and key findings of the research.
  2. Methodology
  3. Findings and analysis of questionnaires, interviews and including visual representation of findings.
  • Key conclusions and recommendations.
  • List of interviewed participants
  1. Annexes including datasets, surveys and/or questionnaires used, a copy of the power point presentation of key findings and recommendations, as well as other related tools such.


  1. Competencies of the company


The team of research company /institution / interested in conducting this study should have a mix of the following qualifications:

  • The researchers’ understanding of child rights and disability related issues
  • Experience in the field of governance, the rights of persons with disability, human rights, education, law, health, disability, social sciences and/or development studies. Organisations comprising of team members with knowledge in above fields are preferred.
  • Proven experiences in designing and conducting researches and producing quality program analysis
  • Proven knowledge in the field of disability, children rights and Research in that field
  • Ability to deliver a high quality product in a timely manner
  • Excellent command of Albanian and English (written/spoken)
  • Ability to produce well-written reports, in a plain and approachable text, demonstrating excellent analytical and communication skills


  1. Application Requirement


Interested companies who would like to apply for the work should submit the following application requirements:


  • Expression of interest: a cover letter with a maximum of two pages, which introduces the consulting/company/organisation with an expression of interest to carry out the work as described in this TOR.
  • CV-s of the proposed research team.
  • Technical proposal: – This should include, but not limited to, understanding of the TOR, methodology (data source, gathering procedure and techniques; and data analysis techniques) and tentative work plan. The organisation should clearly indicate the relevance of his/her previous experiences and the application of these methods to the study.
  • Financial Proposal: – This includes the total financial requirement to carry out the research.
  • Sample of written work with regards to similar topic
  • Other documentation (written quotations form and other documentation that needs to be filled out) will be sent via email or agreed to be picked up in person.
  • Contacts (email and telephone numbers) of three (3) references from similar previous engagements

XI. Consultancy Duration and Timeframe


The research and report have to be concluded on 30 of November, 2017. All preparation, testing and reviewing of the tools, actual field work, data analysisand reviewing of the final report must be completed within the stated timeframe.


Upon signature of the service contract the following shall be provided to DSK:


  1. An inception report (maximum 3 pages) outlining the approach/methodology, data collection tools, and execution programme/timetable. This report shall be submitted for review and approval by DSK within two (2) days after the signature of the contract.


Timeframes are negotiable only if both parties agree.


The company/research institution should work closely with DSK  in undertaking the study covered by this TOR.



XII.      Responsibilities of both Parties


 Roles and responsibilities of the company:


The company will have the following key responsibilities

  • Prepare and submit proposal that incorporates the methodology (research design including data collection methods and tentative work schedule, etc.)
  • Collect the data for the study, in collaboration with DSK
  • The preparation of questionnaires, with the approval of DSK
  • Prepare a first draft report and present to DSK for comments
  • Incorporate all viable comments by DSK and revise
  • Prepare and submit all the deliveries based on the schedule and as per the expected standard quality







Responsibilities of DSK


  • Provide support letter to the consulting company that would permit him/her to get permission/acceptance and support from informants at different levels throughout the process of the assignment.
  • Supervise and support the whole process of the assignment from the beginning till its completion, when and how needed and agreed (provide necessary information and conducted baseline for further guidance).
  • Ensure that the comments given on the draft report are fully incorporated in the final analysis report.



 XIII. Down Syndrome Kosova Association contact:


The proposals should be sent:


Deadline for submitting proposals: September 25, 2017 at 17:00.