Savez udruženja osoba s cerebralnom paralizom Federacije Bosne i Hercegovine

Cerebral palsy associations of Federation of Bosnia and Herzegovina (Alliance) was founded on the Inaugural Meeting held on October 17th 2011 in Sarajevo. The decision was made that 17th October should be declared a Day of people with cerebral palsy in FBiH. Marking the anniversary of the Alliance was organized during October 2012 in Zenica, 2013 in Goražde and 2014 in Sarajevo.

Figure 1. Marking the second anniversary of the Alliance, Goražde, October 2013.

Figure 2. Marking the third anniversary of the Alliance, Sarajevo, October 2014.

Cerebral palsy associations of FBiH (www.cpafbih.org) in its program is committed to fostering measures for improvement of social and health care, upbringing, education, re/habilitation, training, employment and social life of people with cerebral palsy. Cerebral palsy associations of FBiH (Alliance) is organizing expert meetings on the problems and needs of persons with cerebral palsy, informs the public about the needs and difficulties of people with CP and helps members of the Alliance in solving problems of their members in the field of re/habilitation, procurement of orthopedic aids, education, professional orientation, training for work and employment.

Alliance brings together the Associations of persons with cerebral palsy in FBiH and fight for the systemic fulfillment of the rights of persons with disabilities through: Laws on the Federal level, monitoring declarations implementation, conventions and resolutions of the UN and other international bodies relating to the rights and status of persons with disabilities. The next step is the creation of the Union of the Alliance of people with CP in Bosnia and Herzegovina, where the Alliance will work on establishment of the Association of persons with CP in the Republic of Srpska (RS).

Alliance is consisted of four members: Association of persons with Cerebral Palsy of Canton Sarajevo, Association of persons with child cerebral palsy and muscular dystrophy of Podrinje Canton – Goražde, Association of parents of children suffering from cerebral palsy, hydro and microcephalus “Dlan” (Palm) from Zenica and Association of Persons with Cerebral palsy and other disabilities Sapna.

Alliance founders are the Associations of persons with CP from Sarajevo, Goražde and Zenica.

Alliance currently takes care of the interests of about 550 families and their members with cerebral palsy. Of this number there are 150 children (27%), aged up to 18 years. Alliance provides financial and technical assistance to its members. Alliance also initiated and financed web pages of its members: Association of people with cerebral palsy and children dystrophy of Podrinje Canton – Goražde www.gorazde.ucdp.org and the Association of parents of children suffering from cerebral palsy, hydro and microcephalus “Dlan” from Zenica www.dlan.cpafbih.org

Alliance has helped Art workshop of the Association of Citizens with Cerebral Palsy of Canton Sarajevo, when they had the hardest period, when they have lost their premises. Association of persons with cerebral palsy and other disabilities Sapna, the Alliance has designed logo and helped in selection of appropriate names.

Cerebral palsy associations of FBiH is a member of the Council of people with disability organizations of FBiH (VOOSI) since June 29th 2012. VOOSI has nine members: the Association of paraplegics and persons with poliomyelitis from the FBiH, the FBiH Association of the blind, SUMERO, Cerebral palsy associations of FBiH, Association of people with dystrophy of FBiH, Association of disabled workers, Citizens’ Union associations of civil war victims in the FBiH, Associations of persons with cerebral palsy FBiH and the Association of the deaf in FBiH.

VOSSI members by taking a common stance contributed to the consideration of: the preliminary draft of the Law on Fundamental money benefits to support people with disabilities; lists of lottery funds allocation, the procedure of revocation of driver's licenses to persons with disabilities, the preliminary draft for Law on common principles and the framework of material support to persons with disabilities, the draft of the Law on gambling and many other important issues.

In late May 2014, the Alliance has initiated and organized, in cooperation with the Association of persons with Cerebral Palsy of Sarajevo Canton, solidarity action for the members of the Cantonal association of persons suffering from cerebral palsy and hydrocephalus and micro kefalia “Dlan” and the Association of Persons with cerebral palsy and other disabilities Sapna who were affected by floods and/or landslides due to natural disasters. On that occasion was collected aid for 10 families at risk of flooding and landslides in Zenica and Sapna.

In the work of the Alliance are involved volunteers, students of the Faculty of Health Studies, University of Sarajevo.

Activities of the Association of persons with cerebral palsy FBiH

Implementation of the project for Employment of the secretary of Associations of persons with cerebral palsy through the Fund for vocational rehabilitation and employment of Persons with disability of FBiH.
With the Association of parents of children suffering from cerebral palsy, hydro and microcephalus “Dlan” from Zenica and Association “Osmijeh” (Smile) from Olovo, the Alliance has supported the organization of the event Children are treasure, children are gold, from May 31st to June 2nd 2013 in Olovo. Alliance within this event organized conference Inclusion of children and youth with learning difficulties. All-day conference included 16 lectures, experts of different profiles:

– Emira Švraka: The system of education of children and adults with disabilities, in Spain
– Mirsad Muftić: Sport for persons with disabilities
– Husnija Hasanbegović: Reductive integration of sensory modalities in the learning processes
– Naim Salkić: Communication systems of people with hearing loss
– Berka Klinić: Social status characteristics of families of children with developmental and learning disabilities
– Elvira Čekić: Loneliness in adolescents
– Amela Hamzić: Social exclusion of people with cerebral palsy
– Hajra Kadić: Rehabilitation by movement
– Meliha Hadžiefendić: ADHD in children with hearing impairment
– Marijana Zeko: The systematic application of scientific tactics in the correction of behavioral disorders in children with developmental disabilities
– Berin Mehović: The systematic application of scientific tactics in the teaching process with students with disabilities
– Ema Aletović: Peer tutoring: Multiple effect for students with disabilities
– Maida Duraković: Occupational therapy for children with Asperger Syndrome
– Amina Pilav: Development factors of preschool children with hearing impairment
– Mirsad Djedović: Supporting children with learning difficulties in ordinary schools
– Dženisa Kadrić: Occupational therapy of people with cerebral palsy

Figure 3. Promotion of the book of Ismar Krdžalić, Special from the first breath
June 1st 2013, Olovo.

Alliance monitors and supports writing of books by talented children with cerebral palsy.

World Day of Persons with Disabilities, December 3rd 2012, was marked by the lectures in the Department of Special Education and Care for Children “Mjedenica”.
The program called Family and Inclusion organized by the Alliance, Faculty of Health Studies in Sarajevo and the Center for Hearing and Speech Rehabilitation Sarajevo was marked by manifestation organized on December 3rd 2013. Published is the competition for the best children's drawing for children of preschool and school age of Bosnia and Herzegovina. The topics were: friendship, family and the most beautiful day of my life. Members of the Commission were:

1. Professor Marina Finns MD, Academy of Fine Arts,
2. Almedina Kujundzic Pijalović, Elementary School “Alija Nametak”, Stup, Sarajevo and
3. Diana Rifatbegović, Center for Hearing and Speech Rehabilitation Sarajevo.

Of all received, 7 best drawings have been awarded and praised. Award-winning drawings and drawings of students of the Center for Hearing and Speech Rehabilitation, Sarajevo were displayed in the exhibition hall of the Center. The website of the Alliance has a permanent exhibition of drawings that also adorn this book.

At the website of the Alliance www.cpafbih.org in 2014 was opened a Competition for the best photo on the topic of Universal Design – Positive examples of solving architectural barriers for people with psychomotor and sensory disabilities, injured, people of the third age, pregnant women…

Figure 4. The poster of the Alliance to mark the third anniversary, with the winning photograph

Alliance launched the implementation of the following Projects:

• Support for marking the anniversary of the Associations members of the Alliance,
• Eight of March joint field trip and socializing with members of the Alliance and
• Funds to support the participation of members of the Alliance at national and international congresses, conferences, seminars, with the aim of continuing education of people with cerebral palsy, their families and professionals involved in the work of the Alliance.

By working directly with members of the Alliance, given is the initiatives and support for organizing gatherings and trips to the mountains and the sea.

Professional team of the Alliance Project Inclusion of people with cerebral palsy and inactivity osteoporosis working in Tuzla, Goražde, Zenica and Sarajevo in December 2014 and January 2015 encountered a few problems.

Project of the Alliance: Support for marking the anniversary of the Associations which are Alliance members

The biggest problem was wintertime and cold weather which prevented a greater number of persons with cerebral palsy and severe psychomotor disabilities to come out of their homes and come to the agreed sites for measurement. This was particularly the case in Goražde, where because of the cold in the workshop in Vitkovići was difficult to work, regardless of the attempt of warming by heaters. We also organized two home visits, in order to involve more members.

Then was agreed a continuous activity of the Alliance, Project Support to marking the anniversaries of the member Associations. This year, in order mark the anniversary of the Association of Podrinje Canton, the Alliance will participate by purchasing air conditioners for the workshop in Vitkovići. In this way the valuable hands of the members of this workshop will be warm, members healthier, will have higher performance and better earnings. In addition, the Alliance for the Final Seminar of the Project Inclusion of persons with cerebral palsy and inactive osteoporosis, ordered products from workshop in Goražde, in addition to affirmation of its member besides affirmation of the Alliance. Alliance will continue to support the work of workshops in its member associations.

The reintegration of families through gathering “Trip for all – a trip for us” is a project of the Association of parents of children suffering from cerebral palsy, hydro and microcephalus “Dlan” from Zenica, which will financially be supported by the Alliance. The project is designed to organize one day trip within Bosnia and Herzegovina, with a range of activities. During the trip is planned education at the historical or otherwise significant place. Bus is partly accessible for people with disabilities, and parents help each other in the course of entering the buses and when leaving the bus. Through its activities which Association conducted so far has shown that parents and children are delighted with such projects.

Association of persons with Cerebral Palsy of Canton Sarajevo, under the project of the Alliance, this year is implementing the project Resocialization of association members with cerebral palsy through socializing and field trips.
Association of persons with cerebral palsy and other disabilities Sapna expressed the desire to improve the equipment, and the Alliance will contribute to the purchase of a laptop and banners.

Table 1. Dates of Alliance Associations members anniversaries

Association of persons with cerebral palsy of Canton Sarajevo

Association of persons with Cerebral Palsy of Canton Sarajevo was founded on May 15th 1984. The Association has 331 members, of which 76 children up to 18 years.
Together with the associations that create the Coordination Committee of the Sarajevo Canton, the Association with the cantonal government institutions is building partnership, reaching better regulation concerning persons with disabilities. As evidence of that is the Action Plan of the associations of disabilities which was been referred to the Sarajevo Canton Government, with which in the next five years will try to improve following areas: accessibility, services (support services), social housing and orthopedic aids. Association, despite increasingly difficult financial situation continues to assist its members through projects, training, courses, established ART Workshop, meetings, trips, sports and recreation. Two major projects were funded by the Ministry of Health of the Sarajevo Canton and the City Administration of the City of Sarajevo. These projects included and involved younger and older members of the Association. Continuous is the physical exercise at home under the expert supervision of doctors, which polluted excellent results. Unfortunately, due to extremely poor financial situation in Sarajevo Canton these projects have already been for a couple of years at “standby”.

Figure 5. Members of the Association of people with cerebral palsy
of Canton Sarajevo, January 1st 2015.

Association for 12 years successfully cooperates with the Slovenian Union “Zvezda Sonček”. During these years of cooperation, our 40 members were in Sonček recreation center “Eleri” in Ankaran. Interested members with accompanying persons for seven years organized staying for seven days at sea in Zaostrog, in the resort Bosina, to some extent adapted for people with disabilities. This Project is supported by “OSCE” with free transportation. Already adopted rules, regulations, laws, ratified Convention on the Rights of Persons with Disabilities from 2009 and Strategy, provide a tool in the hands and hope that in the future, in cooperation with relevant government institutions, will significantly improve the status and situation of people with disabilities, especially persons with cerebral palsy.

Art workshop is a rehabilitation workshop of the Association with Cerebral Palsy of Canton Sarajevo, for production of unique art objects, established in May 2007. Web page of the Art workshop www.art-radionica-cdp.tripod.com and business cards are made by a member of the Association for paraplegia, a person in a wheelchair.

Association of patients with child cerebral palsy and muscular dystrophy of Podrinje Canton – Goražde www.gorazde.ucdp.org

Association of Patients with cerebral palsy and muscular dystrophy the Podrinje Canton – Goražde is non-political, non-governmental, voluntary, humanitarian organization that gathers persons suffering from cerebral palsy and muscular dystrophy (CPD), and their families and other citizens who access it, in order to realize all forms of assistance and support suffering from CPD, as well as early detection of disease, and remove the causes of its origin. Decision of the Muscular Dystrophy Association of Sarajevo Association CPD advocates also members with dystrophy.

During previous work the Association with the help of various humanitarian governmental and non-governmental organizations successfully implemented a number of projects:

• Provision of material assistance in the form of food, medicine, clothing, footwear, orthopedic appliances, etc.
• Education in various fields of art and science;
• Providing and creating conditions for rehabilitation;
• Open a video store;
• Provision of equipment and office supplies necessary for the operation of the Association;
• Greeting cards, souvenirs and handicrafts and their sale;
• Extending the cooperation with similar associations in the country and abroad.
• Creating conditions for providing various services to citizens in the form of photocopies, rent, etc., for the purpose of providing funds for the Association.
• Organizing various content for fun, relaxation and entertainment, such as excursions, a division of festive gifts, socializing etc.;
• Providing financial resources in accordance with the possibilities for members of the Association;
• Raising awareness of the community about persons with disabilities through the performance, promotion, documentary etc.;
• Educating parents, guardians and other people important for the lives of people with disability through seminars and talk shows, round tables, etc.

Figure 6. Workshop of the Association from Goražde, in Vitkovići

One of the most important projects is the opening of the workshop “Životna pomoć” (Life Aid) for occupational work with people with disabilities in Goražde. This project is currently in the phase of expansion by the range of products and harmonization of legislation. The greatest success is that the products of the workshop meet the requirements of the German market, which indicated that despite disability persons with disabilities may be accurate, up to date, according to market demands.

The Association participates in the Alliance Project Inclusion of people with cerebral palsy and inactivity osteoporosis which provides support directly to its members, but also their members which is unique in the last few years.

Figure 7. Expert Team of the Alliance Project in Goražde, January 17th 2015

The main objectives and tasks of the Association CPD are: gathering of persons suffering from cerebral palsy and muscular dystrophy, and members of their families in order to achieve immediate economic, social and other forms of assistance; the exercise of rights in education, rehabilitation, vocational training and employment of people with CPD; Finding material, spatial and other conditions for the undertaking of production, service and other activities; Launch initiatives for achieving the conditions for the early detection of CPD and its treatment and other activities in accordance with the law, statute and opportunities of the Association.

Association of parents of children suffering from cerebral palsy, hydro and microcephalus “Dlan” from Zenica

The association was founded of February 14th 2011. During the first year of existence held a public debate in the Bosnian National Theater in Zenica.

Association “Dlan” is working on socialization and re-socialization of individuals, children and families, supporting and empowering parents of children, ensuring that parents are easier cope with a situation in which they find themselves, gain skills and get a better understanding of the social community.

The Association has implemented several projects:

• The work of parents and professional staff with children suffering from cerebral palsy, micro kefalia and hydro cephalus, exchange of information between parents and socializing.
This project is designed from the needs of parents for easier work with children and to improve their communication and education.
It is necessary to allow parents convenient access to public life. Facilitate communication between parents across the country. Connect parents and children with people from their environment.
• Playgrounds are also for us -Made is a playground for children with special needs.
• For all these reasons, Association Dlan devised Project Let our voice be heard whose intention was to awake the public and provide expert assistance to children and young people, as well as their parents and carers.
• Sustainability of family – Donation of raspberry seedlings for 5 families.
• Bus for us – Donation of vans with a ramp for people with disabilities, by USAID.
• Development of the project and obtaining building permits for “Center for Persons with Disabilities” Zenica.
• Donation of 40 orthopedic wheelchairs and donations of 7 electric wheelchairs – Istanbul educational and cultural center of Sarajevo.

Figure 8. The representatives of the Association of parents of children suffering from cerebral palsy, hydro and microcephalus “Dlan” from Zenica and Project team members, December 20th 2014.

Association of persons with cerebral palsy and other disabilities Sapna

Association of persons with cerebral palsy and other disabilities Sapna was established on May 19th 2008.

The Association is committed and determined to continuously and consistently builds, together with other, establishing healthy relationships in the community, creating conditions in which the society will accept people with disabilities as equal members of their community, work to reduce poverty of persons with disabilities.

To make all this happen, Sapna Association is an organization that is constantly learning, ready to respond to the needs and take advantage of opportunities; an organization that believes in its purpose and that operates in accordance with its environment.

Figure 9. Association of persons with cerebral palsy and other disabilities Sapna, in the Centre “Koraci nade” (Steps of Hope), Tuzla, December 13th 2014.

Nongovernmental organizations and media

The NGO sector is closest to the citizens and therefore it is very often the loudest “corrective factor of public policy”. It is a promoter of new ideas, the implementer of new practices and protector of principles of a democratic society. Particularly important is its role in monitoring the implementation of educational policies, its objectives and tasks, and in reporting to the institutions dealing with the protection of children's rights in the country and abroad (18).

In education, the inclusion of the role of NGOs is particularly important when it comes to legislative advocacy, activities to promote inclusive principles at the community level, sensitization and provision of direct support for user groups in school and out of school environment (18).

People with CP are members of various Associations/Alliance, for example Alliance of organization for support of people with intellectual disabilities FBiH/SUMERO, which was formed in 2000 and consists of 30 members and a number of partner organizations throughout Bosnia and Herzegovina.

In Sarajevo, on November 17th 2014 is established the Coalition of marginalized groups in BiH KOMA. Over 80 representatives of public, private and civil sector, representatives of the donor community and many media attended the inaugural Coalition of marginalized groups in BiH KOMA. Associations of persons with cerebral palsy FBiH became a member of this Coalition.

Centre for children with multiple disabilities “Koraci nade” (Steps of Hope) Tuzla began operating in 1994 as a project of the British NGO OXFAM. From 1997 to 2005 it served as one of the projects of the Information Centre for Persons with Disabilities “Lotus”, and today the Center “Koraci nade” acts as an association of citizens whose part of activities is financially supported by the Ministry of Social Affairs and Labor, and other assets center strives to provide through various projects and donations. Its work includes the 162 Center users, the age from 0-21 years with all degrees and categories of disability from all over Tuzla Canton. The Center has its own adequate space and necessary equipment for work, as well as a van for users transport.

Figure 10. Members of the Centre “Koraci nade”, the participants of the Alliance Project

The work of the academic community is important in journalistic activities through the publication of professional and scientific papers and organization of conferences, symposia, conferences and seminars.
The media are important in promoting educational philosophy, examples of good and bad practice and monitoring the implementation of reform goals (18).

Figure 11. Seminar Occupational therapy, organized by the Faculty of Health Studies in Sarajevo, October 2012

Figure 12. Media coverage of the Project, Sarajevo, January 24th 2015.

In a survey of public attitudes towards people with mental disorders, in 246 media reports in the one-month monitoring period demonstrated the popularity of certain topics related to this issue: suicide, stress, sexual and reproductive health and disorders, mood disorders and cognitive function/capability, positive psychology, addictions and emotional-relational problems. Much content published in magazines/portals on mental disorders are not written in accordance with scientific facts, or not supported by scientific evidence, but they were written for the “masses” in a fun tone. In daily newspapers, as well as on news portals, where was represented the largest quantity of the content there is overrepresentation of mental health through reports in “The Crime” and “News” about suicide, homicide, aggression and addiction, and can be seen a constant connection between mental health with disabilities, their diseases and pathology. On the other hand, there is extreme in reporting on positive psychology through popular-scientific content in an uncritical and non-transparent way (without data on the context, method, and approach to the research) published data of foreign studies directly taken from other media. In this content dominates unwarranted optimism in the approach to stress, sexual/reproductive health and mood disorders. The concept of mental health is reduced to reports dominant negative character located in “The Crime”, or in marginal topics such as “Lifestyle”, “Magazine”, “Interesting” which publish scientific and popular content on stress, sexual health and cognitive abilities with the addition of quick tips on mental health, treatment and health preservation (19).