DSK Concept

National Organisation:

Down Syndrome Association of Kosova Association

Area of Activities.

People and families with Down syndrome on: Human Rights, Advocacy, Parent Education, Early Intervention, Inclusive Education, Self Advocacy, Supported Employment, Vocational Training

Address

Kroi I Bradh, G, No.72,Dardania 10000 Prishtine, Republic of Kosovo

Reference name

USAID,IREX,ATRC; KFOS foundation, Telekom of Kosova, World Bank in Kosova, Down syndrome Association UK, Good governance office of Prime, Government of Kosova, Foundation for Democratic Initiatives, UNDP Kosovo.

Vision

For equal opportunity in society, fully respective of humane diversity of individuals affected with Down syndrome and their families.

Mission

Raising awareness of parents, family members, institutions and society in general for people affected with Down Syndrome.
Creation of sustainable partnership and long term with central and local institutions and NGO’s who are dealing with individual with limited abilities in the country and abroad.
Wide support of people with Down Syndrome; offering professional medical Services, inclusion in the early education system, primary and secondary education and offering of integrating work possibilities.
Professional approach and financial support of Resource Centers for individual with Down Syndrome, their family members, workers, professionals and volunteers for central and local domestic institutions, private business and potential donors.

Background and justification

From 4th of march 2007 until march 2008, 516 individuals affected with Down syndrome have become member of NGO DSK, almost all ethnic groups and from total member are 326 are under age of 14 .

Despite introduction of legal framework for special needs education in special schools from governmental institution and by promoting the protection of children with special needs their right to inclusive education, to receive education without discrimination is still far from being granted in practice.

IBase in our data, about 60 percent are isolated and currently, as little as 90-95 percent of individuals with Down syndrome are believed to be illiterate.

This situation is because of lack rehabilitation services, medical care intervention and unprofessional information provided from doctors, and agencies of Kosovo governmental institutions.

Drastically of lack of early intervention and educational services, non clearance of long-term plans for children, lack of knowledge and relevant educational background in the field of down syndrome, lack of respite care and other family support services the parents and whole community with Down syndrome in Kosova has come into very risky situation, non served well and without access to normal live, even it happen often to receive offence services from some local NGOs and special schools

What we offer! - Programs

The early intervention and education program (EIEP) for children with Down syndrome, new parents as well as their family members.

Education of parents; Increase a level of mobilization and Trainings, Lectures on specific aspects

Partnership and sustainability with governmental institutions, NGOs

Self Advocacy, Training and Supported Employment-Safe and full integration of people affected with Down Syndrome Resource Centres for people affected with Down Syndrome.

Program goals

To become one of the most important contributor and reliable in protection of rights of people with Down Syndrome and their families.

To achieve long term sustainability as national NGO, expanding services in entire country.

To Develop Early intervention and Education program in two area.Early intervention for children with Down Syndrome as the only method of improvement of inclusion in education and inherent integration.

Increase the awareness of parents for human rights, expressly children rights and providing practice to parents of children’s affected with Down syndrome as well as to their family member.

Advocacy to local authorities, focusing of they role and obligation on providing adequate services to children with Down syndrome.

Excepted results

The development of programs is to emulous the level of respecting the human rights on inclusive education system provided from Kosovo local relevant governmental institution and schools personnel. Developing the activities planed through this programs It will be much benefited to local education authority, personnel of schools, especially parents and their children’s with Down syndrome.

The parents will be equipped with very necessary information on human rights conventions, children’s rights regarding also in inclusive education process and specifically to the local laws, the education system and resources, other official documents like strategy of education 2007/2017 and shall be provided a draft also of national action plan for disability after 3rd of December 2008.

Our Methodology

Mobilization community, visiting the families, supporting with information, encouraging participating on activities, daily activity in Down Resource Centres (4) and motivating parents to don’t be part of isolation and situation without alternatives.

In the Down syndrome Resources Centres in Prishtina, Prizren, Gjakova, and Ferizaj, the early intervention and education program starts at first week after the child born. By weekly visits from a member of Parents Support Group (PSG), who will corporate together with paediatric doctor, shall indentify the additional needs of mother and child and ensuring the examination table of newborn babies with Down syndrome. (Ref, to MoA, University Centre of Clinics, Genecology Clinic and Lab. and DSK NGO, July 2007)

Up child age one, the activities of PSG assesses the child's development and provides simple exercises and aids to the parent to help stimulate their child's development.

After age 1, and to age 6, the child and mother will be enrolled in an early education program provided by personnel of DSRC Program, ( Annex II, ). The program offer the early education services, supported by physiotherapy, occupational therapy and speech language therapist, at least until the child will be possible to refer to mainstream: kindergarten, pre-institution or primary school (our goal, because we believe and for others we have facts).

The Early Education Program Includes four subprograms:

The Early Learning Program (ELP)
Early Childhood Services (ECS)
Referral System and monitoring (RSM)
Child Grade skills (to refer in kindergarten, pre-school institution and primary schools) (ChGS)

Our Capacities, Human Resources and reporting system

Down Syndrome Association of Kosova has two inter tool/body the Parents Support Group (PSG) and the team of experts in fields: Professors and Doctors in Genetic and paediatric, cardiologist, physiology, inclusive education and nursery. Available network of 11 coordinators through municipalities.

The Board of Direction is directing the NGO which are seven members, and technical body like Director Executive, Vice Director and Admin/Finance manager (to be re-elected each year, regarding association statute).

Experience and Records

By Action Plan proposed from Executive Director on April 2007, which was approved from two inter body/tool: The Parents Support Group and Team of Experts of relevant fields (Pediatric, Genetic, Physiology, and inclusive Education expert), and three objectives were included in action plane for year 2007 :

Mobilizing the community of people affected with Down Syndrome
Creation of database for people affected by Down Syndrome
Raising awareness among parents, institutions and society in general.

Achievements/ Outcomes during 20 months of association: ……….

Media campaign, February-March 2007, three debates on broadcasting ,national TV, two articles in daily news papers.
Marked World Down Syndrome Day(WDSD) on 21/03/2007. (For the first time in Kosovo)
Memorandum of cooperation with Clinical and University Center in Pristina, 23 June 2007

Inaugurating the Down Sy Resources Center in Municipality of Gjakova

Memorandum of cooperation with NGO HandiKos, July, 2007
Memorandum of cooperation with Down Syndrome Centar Pula-DSC, Republic of Croatia, July 2007
Memorandum of cooperation with NGO Mother Theresa, September,2007
Implementation project on training and rehabilitation of twelve mothers with children as well as for educators in Down Syndrome Center Pula, Croatia 16-27 July 2007, supported from Albanian community of Region Istria in Republic of Croatia and DSC Pula.
Organization of exhibition of Gresa Hoxha(24 year old) from -01 to 05 September 2007, in Albanological Institute, Prishtina
Implementing project “Who am I”, supported by USAID and IREX through ATRC, (September 2007-January 2008), Project for mobilizations of community of people affected with Down Syndrome.

Implementing Project “Step I” , supported by KFOS (Kosovo Foundation for Open Society). Project for creation of partnership with countries of EU; grant amount EUR 9822
Participation in International Congress for Down Syndrome, Pula, Croatia. October, 11-14
Membership in progress with European Down syndrome association ”edsa”
Membership in progress with Down Syndrome Association of United Kingdom
Establishment of Down Center, resource centre for individuals affected with DS, parents and professionals 30/12/2007, Prishtina, Centre which is financially supported by parents who’s children are affected with down Syndrome.
Published web site 3 December 2007
Compiling of Strategy Plan for 2008/2010. January 2008, through 4 workshops, including experts of relevant fields and representatives of government institution
Organized the General Annual Assemble of Association, 9th march 2008, presented Annual Report.
Survey on citizen, precipitation for individual with Down syndrome and visibility of DSK NGO itself for a yearly impact. 20 march 2008.
Marked World Down Syndrome Day,21 ,march 2008, 123 participants, parents, local education authorities, preschools and primary school personnel , good governance office of Primer covered by broadcasting and other media.
From January to June 2008, seven tv broadcasting presented, 4 live radio emissions, 3 articles in news papers and one in Teuta magazine.
Awarded Grant from Telecom of Kosova, Administrative Expenses of Down Resources Center in Prishtina for period of January 2008/2009,(inc; Rent, tel, electricity, water),
Implementing project Step II, supported by KFOS Foundation, Project on increase the awareness level of central and local education authorities for inclusion education of individuals affected with Down syndrome. Starting project May’08, ending December ’08
Implementation the project “Supporting Activities in Down Resource Centre in Prishtina” and pilot program “Summer School) for pupils with Down syndrome starting. Begin, May ’08 ended September ’08.
MoA with Elektromotori Company, Using the space of kindergarten building in Gjakova Municipality , May 2008, established the Down Syndrome Centre in Gjakova, 13 June 2008.
Decision awarded from Municipality of Prizren for Down syndrome Centre in Prizren, June 2008.
Decision awarded from Municipality of Ferizaj for offices for DSK NGO in Ferizaj. On 13 august 2008
Organisation a visit to DSK NGO of expert on inclusive education of children with Down syndrome, Mrs Cecilia Mackinnon from Down Syndrome Association of UK. Nine day visit, workshop for personnel of Down syndrome recourses Centres, 45 teachers of primary schools in Prishtina and 11 students of Pedagogy Faculty, Special Education branch. 9th to 14th September 2008
Starting to implement the new program named “X-21”: Training program for youth and adults with Down syndrome (decorative hand products, waiters and barman, club of meetings), August/September 2008.( Vulnerary programme, not jet supported financially)

Media Covered

More than 70% of activities covered from electronic and writing media, 6 invitation on national TV morning emissions, 2 reportage, one on central news edition, 8 radio live emissions, 11 newspaper articles, ect

Monitoring, evaluation, reporting system

Weekly plan activities, assessments form of parents and participants, monthly reporting on activity outcomes and finance reports, evaluation yearly financial and narrative.

Place

Republic of Kosovo, 4 Municipalities (Prishtine, Gjakove, Prizren, Ferizaj), in process Mitrovica, Gjilane ,Peja

Annexes

Up to request

Annex I

Timeline activities yearly , November 2008/2009

Activities	Nov 08 ot Jan 09	Feb to April 09	May to June 09	July to Aug 09	September 09	Oct to Nov 09	Responsibility
Visits to local government institutions and education institution	ok	ok	-	-	-	-	Manager/coordinators
Meeting with parents	ok	ok	-	-	ok	ok	PSG,DSRC Manager
Lectures for early education	-	ok	ok	-	ok	-	PSG, lecturers
Lectures for rights’ in education and resources of schools and local authorities	-	ok	ok	-	ok	ok	PSG, lecturers
Evaluation of projects	ok	ok	-	-	-	-	Project Managers
EIEP Program	ok	ok	ok	-	ok	ok	DSRC Managers &staff
.”X-21” Program	ok	ok	ok	-	ok	ok	PSG,DSRC Manager
Awareness Events/conferences	ok	General Assemble 21march, World Down Sy Day	-	-	-	-	Board of Direction, PSG,Director Executive, Team of Experts