Serbia will celebrate for the first time  28 of February as an International Day of Rare Diseases. European organisation for rare diseases – EURORDIS – established this Day in 2008 with aim to raise awareness on rare diseases, their consequences and barriers persons with this diseases faced with.

Due to this Day, National Organisation of DPOs in Serbia with Ministry for Labor and Social Policy and Association of Dystrophics of Belgrade organise press conference on Friday, 27 of February. Conference speakers will be  representative of the Conference organisers.

Rare disease is the one which incidence is less than on on 2 000 persons, but it is neccessary to point out that there is a line of diseases which incidence is one on several hundreds of thousands or even one in few million citizens. It is estimated that there are between 5.000 and 8.000 rare diseases in the world today, that influence on physical and mental abilities (muscular dystrophy, cerebral paralyse, hepatitis B and C, autism, blood cancer, existing in Serbia as well. Every week it is discovered five more rare diseases.

Some of common characteristics are the facts that public awareness of rare diseases is very low,  that 80% of their has genetic code, that at 50% of diseases first symptoms appeares at birth or in early childhood, that the wrong diagnoses are very often as well as inadequate therapies which has bad impact not just on persons suffer from these diseases but also on their families. Most of these diseases has permanent disability as final result and persons suffer from that diesases have need for high level of social support and very often feel isolated and excluded from the society.

Denmark: New Rules on Personal Assistance Kirsten Plambech from Disabled Peoples Organisations Denmark (DPOD) reports about new legislation in Denmark:From 1st January 09 new rules are effective in relation to personal assistancebased on direct payment. The municipal council shall pay a subsidy towards the costof engaging assistant carers and attendants for persons with substantial andpermanent impairment of physical or mental function requiring particular support.What is new about these rules is the possibility for the individual to hand over thesubsidy to an organization, ruled by persons with personal assistance themselves, toa private company or a relative. They will hereafter administer the assistance.From a legal point of view, the individual can hand over the responsibility for being anemployer. However it is done, the individual keeps the responsibility for the day-todayplanning of the work, engaging the necessary help and so on.If being entitled to this kind of assistance, the municipal council cannot decideanything on behalf of the individual in relation to the planning of the arrangement.The individual decides, whether they wish to be an employer themselves or they willhand over the responsibility to an organization, a private company or a relative. Theindividual decides who to employ, the day-to-day planning and so on.About 2200 persons in Denmark are expected to fulfil the conditions to thisarrangement.A new organization called LOBPA (The national organization of people with personal

assistance ruled by themselves) has come into existence.

Finland: Bill on Personal Assistance Terhi Toikkanen from Assistentti.info pointed out a new bill on PA.A government bill on personal assistance for people with severe disabilities draftedunder the lead of the Finnish Minister of Health and Social Services Paula Risikkotogether with the Finnish Disability Forum has been completed. According to the bill,persons with severe disabilities who are in need of necessary and repeatedassistance in their everyday activities as well as for work and studies are entitled topersonal assistance. The objective is that the Act will enter into force on 1 Sep 2009.In the present Finish system, the municipality compensated the disabled person whoemploys an assistant for their costs. With the new Act, there are two morealternatives: – a) the municipality will give the person with severe disability a servicevoucher for purchasing assistance service – b) the municipality organises the servicein the form of a purchased service, through its own service production or in acontractual cooperation with one or several municipalities. In this way, the lawamendment will make it possible for persons with disabilities to obtain personalassistance in the form of a service – without employer obligations.

In December, a research study by The Children’s Society found that about a third of children said they did not learn about disability at school.

Under the Disability Equality Duty of the DDA the education system has a duty to promote positive attitudes towards disabled people. This may best be achieved by learning with and learning from disabled people, rather than about them.

The UN Convention on the Rights of Disabled People signals a shift in thinking about disabled people, from objects of care and special treatment to subjects of rights. However, in schools this understanding of disability equality is far from becoming a reality.

“34 percent of schools that taught disability equality incorporated it into social activities, including school trips and joint sports days with special schools.” reports The Children’s Society.

Disabled people and their organisations argue for inclusion to promote positive attitudes.

Disability  Equality in Education  affirms that parents and professional should be allies to young disabled people by

·         Empowering disabled children to have a strong sense of self as disabled people

·         Join the struggle to stop segregative practice

·         Building strong peer relationships with disabled and non-disabled peers.

“The movement for Inclusive Education is largely misunderstood and under-reported in the media”, argues the Alliance for Inclusive Education. They have produced a DVD for everyone who wants to work towards a society built, not on exclusion, but one in which all people are brought up to live well together.

To read the full research go to http://www.childrenssociety.org.uk/whats_happening/media_office/latest_news/10836_pr.html

It  is a great pleasure to announce that after five years of implementation the project Personal Assistant Service in Serbia, through Center for Independent Living Serbia, this service  continue to live in Jagodina (CIL branch city) from 1st of February 2009, funded by  Jagodina Municipality.

Jagodina Municipality adopted Strategic Plan at the end of 2007 and commited itself to realise one of priorities within the next four years – realisation of Service of  Personal Assistants, as one type of support services to Persons with Disability.

According to that and the needs of PWDs Municipality commited funds for five PAs for 2009 which enables continuum for previous five users of service.

It is our hope that this will mean the continuance of long ago started pilog project (2003) of PA Service, that this service will become one of possible supports for Persons with Disability in Serbia.

Barack Obama and Joe Biden have a comprehensive agenda to empower individuals with disabilities in order to equalize opportunities for all Americans.

In addition to reclaiming America’s global leadership on this issue by becoming a signatory to — and having the Senate ratify — the UN Convention on the Rights of Persons with Disabilities, the plan has four parts, designed to provide lifelong support and resources to Americans with disabilities.

They are as follows:

First, provide Americans with disabilities with the educational opportunities they need to succeed.

Second, end discrimination and promote equal opportunity by restoring the Americans with Disabilities Act, increasing funding for enforcement, supporting the Genetic Information Nondiscrimination Act, ensuring affordable, accessible health care for all and improving mental health care.

Third, increase the employment rate of workers with disabilities by effectively implementing regulations that require the federal government and its contractors to employ people with disabilities.

And fourth, support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution, creating a voluntary, budget-neutral national insurance program to help adults who have or develop functional disabilities to remain independent and in their communities, and streamline the Social Security approval process .

President Obama and Vice President Biden are committed to supporting Americans with Autism Spectrum Disorders (“ASD”), their families, and their communities.  

http://www.whitehouse.gov/agenda/disabilities/ 

Center for Independent Living Serbia and Handicap International, supported by EIDHR, organised Conference on Cooperationfor Improvement of Disability Policy in Serbia from 17/19 of November 2008. The aim of the Conference is:

• to make commong overview of current and most important achivements in disability area in Serbia on national and local level, including information on current situation in legislation, UN CRPD ratification process, policy and strategic development
• to discuss possible ways of strengthen common advocacy work on all levels, information sharing and competence improvement
• to identify neccessary steps tha DPOs should take to improve disability policy in SErbia (having in mind Resolutions from Step to Europe II Conference, adopted in Sarajevo this year)

 This will be opportunity to learn more on local level work from eight coalitions who are making Local Plans of Action in Disability area in their communities. 

Center for Independent Living Serbia organised workshop on importance of CRPD for representatives of Human Rights Organisations and DPOs. Workshop was held in Nis on 5 of November and there were 16 participants at the workshop facilitated by Damjan Tatic, Dimitrije Gligorijevic and Svetislav Marjanovic.

This workshhop is one of the activities within the SHARE SEE project run by Handicap International in parthership with CIL Serbia.

CRPD is important documet who should be used and adjusted with other legislative document for PWDs and other marginalised groups in Serbia.

(New York, United Nations, November 3, 2008): Today, the first Conference of States Parties on the Convention on the Rights of Persons with Disabilities (CRPD) elected the new Committee on the Rights of Persons with Disabilities which will be in charge of monitoring the implementation of the CRPD.  The Committee comprises seven men and five women, of which nine are persons with disabilities. The twelve Committee members elected are:                               

Monsur Ahmed Choudhuri (Bangladesh)  (4-year term)           
Amna Ali Al Suweidi (Qatar)  (4-year term)           
György Könczei (Hungary)  (2-year term)               
Ana Peláez Narváez (Spain)  (4-year term)           
Cveto Uršič (Slovenia)  (2-year term)                   
Jia Yang (China)  (4-year term)                   
Mohamed Al-Tarawneh (Jordan)  (4-year term)       
Ron McCallum (Australia)  (2-year term)           
Maria Soledad Cisternas Reyes (Chile) (4-year term)       
Germán Xavier Torres Correa (Ecuador)  (2-year term)       
Lotfi Ben Lallohom (Tunisia)  (2-year term)           
Edah Wangechi Maina (Kenya) (2-year term)           

The Committee on the Rights of Persons with Disabilities is the body of independent experts and will monitor implementation of the CRPD by the States Parties.

After the completion of Personal Assistance Service for PWDs in Serbia, three children (11, 12 and 16 years of age) has had to take care on his father Zoran Antonijevic (42) suffering from Multiple Sclerosis.After numerous texts in printed media this family got a big support from VICTORIA GROUP corporation from Vojvodina. PR Manager of this Corporation, Natalija Kurjak, said  that after reading the text about this family, they decided to pay persona assistant for the father and to fund children untill the end of their schooling.

Although there are certain number of marked parking places for Persons with Disability in Nis you can who is doing what.

Katica Randjelovic
CIL Branch from Nis

ADRF representative, Mrs. Bardhylka Kospiri addresses the Parliamentary Commission on Electoral Reform, on the Electoral Rights of People with Disability in Albania. 

Today, on October 7^th, 2008, the Commission on Electoral Reform at the Albanian Parliament, invited in a hearing session, representatives of civil society organizations, Albanian Helsinki Committee for Human Rights, Albanian Disability Rights Foundation, INSIZ and G 99,  to discuss and bring to the attention of MPs, their concerns and issues of interest to the Electoral Code.

The representative of ADRF, the disability advocate, Mrs. Bardhylka Kospiri, in her address to the Commission, articulated the importance of legal provisions to enable people with disability, exercise their right to vote.

Despite hard efforts, aiming at the complete involvement in the electoral processes and therefore the fulfillment of the constitutional right to equal, direct and secret voting for voters with disability, including blind people, people with moving difficulties, people with communication problems, hospitalized people or people not able to move out of their residences (home-bound voters), all this category of voters, are still excluded and can’t exercise this right because the existing Electoral Code, still continues to create barriers to them.

Today on this hearing session, ADRF presented a complete package of recommendations that aim to improve the access of people with disabilities in the political and electoral life of the country as part of the Electoral Reform that is under process in the Albanian Parliament. These recommendations were also supported by Disability and Development Coalition, Albania.

In her speech, Mrs Kospiri, emphasized the necessity to ensure the right to vote for home – bound voters, through mobile ballot box, as well as provision of accessibility and other facilities for those who can go to the voting centers.

Mrs. Kospiri appealed that inclusion of these recommendations in the New Electoral Code, will contribute to ensuring a law that complies with European and international Standards.

We, the undersigned call on International Olympic Committee and the International Paralympic Committee, to combine the Olympics and Paralympics in to one event.

Continued separation of the games in to two separate events goes against such principles. Go to http://www.gopetition.com/petitions/combine-the-games.html