1. WERKGROEP HERSENTUMOREN vzw Study Group Brain Tumours Belgium BBC-CONGRES 17-18.09.2010 EXPECTATIONS AND NEEDS OF PATIENTS SUFFERING FROM A BRAIN DISORDER Frank Boeye

2. OUR EXPECTATIONS ? TO LIVE A “NORMAL” LIVE WITH PARTICIPATION IN EVERY ASPECT OF SOCIETY WITHOUT EXCLUSION

3. ARE PEOPLE WITH A BRAIN DISORDER PERSONS WITH DISABILITIES OR A HANDICAP ? Most people with a brain disorder suffer from: -Concentration disorder -Chronical tiredness -Low endurance -Slowness -Focal deficit in function of the lesion in the brain Often there are disorders at the following levels: -Motoric -Sensorial -Relational

4. In our communities, disability is seen as a charity issue. You are not seen as a person who can have a life, get a job, live independently. This is very much against our human rights. There is a huge need for awareness work in our countries Maria Veronica Reina Researcher with mobility impairment Argentina

5. UN-TREATY OF 13.12.2006 RIGHTS OF PERSONS WITH DISABILITIES SIGNED BY THE BELGIAN GOVERNMENT ON 31.03.2007 RATIFIED BY THE REGIONAL PARLIAMENTS SPRING 2009

6. Realizing that the individual, having duties to other individuals and to the community to which he or she belongs, is under a responsability to strive for the promotion and observance of the rights recognized in the International Bill of Human Rights. UN-TREATY 13.12.2006 RIGHTS OF PERSONS WITH DISABILITIES PREAMBLE

7. UN-Treaty 13.12.2006 RIGHTS OF PERSONS WITH DISABILITIES GENERAL PRINCIPLES -Respect for the inherent dignity, autonomy, including the freedom to make one’s own decesions, and independence of persons -Non-discrimination -Full and effective participation and inclusion in society -Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity -Equality of opportunity -Accessibility -Equality between men and women -Respect for the evolving capacities of children with disabilitiesto preserve their identities

8. RIGHTS -Equality before the law without discrimination -Right to life, liberty and security of the person -Equal recognition before the law and legal capacity -Freedom from torture -Freedom from exploitation, violence and abuse -Right to respect physical and mental integrity -Freedom of movement and nationality -Right to live in the community -Freedom of expression and opinion -Respect for privacy -Respect for home and the family -Right to education -Right to health -Right to work -Right to an adequate standard of living -Right to participate in political and public life -Right to participate in cultural life

9. Where does our country not take sufficiently into account these principles and rights ?

10. Right to live in the community People with disabilities are banned to the outskirts of society. They are made invisible

11. RESPECT FOR HOME THERE FIRST HAS TO BE AN HOME !!! Insufficient social housing and adapted housing is common in much communities. Personal assistance is a right

12. RIGHT TO HEALTH Long term or even lifelong rehabilitation is not yet a fact. Rehabilitation for neurological lesions is not finished after 3 months. It may take years.

13. RIGHT TO WORK -The profile of people with neurological disease is definitely not favourable to employment. Most fellow-sufferers loose their work and younger patients do not really have access to the labor market. They often have to relie on payment of very low benefits. Chronic diseaese leads to poverty -Inclusion in the labor market if possible must be a political goal

14. RIGHT TO AN ADEQUATE STANDARD OF LIVING -Discrimination in wages must cease -Benefits must be raised above the poverty limit -Social and adapted housing programs must be established in each community

15. RIGHT TO PARTICIPATE IN POLITICAL AND PUBLIC LIFE Paternalism must come to an end The vast majority of people with a brain disorder are capable of making their own choices, it only takes time … Disabled people must be included in decision making

16. PARTICIPATION IN CULTURAL LIFE Primary needs are: -Housing -Food -Care Secundary needs at the human level: -A meaningful occupation -Recreation -Positive project for the future -Social inclusion and integration

17. List of priorities 1.Personal assistance 2.Social housing 3.No discrimination on the labor market 4.Professionalising of the care, extra-training for personeel of institutes 5.Quality control 6.Benefit boven the overtyp limit 7.Continuïteit in mediaal and paramedical care 8.Proactive support in order to prevent a negative psychosocial spiral, which ends in apathy, depression and poverty 9.Equal access to insurances 10.Adapted inclusive education or, if need be, in specialised institutions

18. CONCLUSIONS -The UN-treaty is an ethical document -Inclusie -Social implications -Economical implications -Cultural implications -Change of mentality -Adaptation of legislation and rules -Control about implementation -Participation of all stakeholders