Upload
kerrie-butler
View
213
Download
0
Embed Size (px)
Citation preview
WERKGROEP HERSENTUMOREN vzwStudy Group Brain Tumours Belgium
BBC-CONGRES 17-18.09.2010
EXPECTATIONS AND NEEDS OF PATIENTS SUFFERING FROM A BRAIN
DISORDERFrank Boeye
OUR EXPECTATIONS ?
TO LIVE A “NORMAL” LIVE
WITH PARTICIPATION IN EVERY ASPECT OF SOCIETY
WITHOUT EXCLUSION
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
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 ReinaResearcher with mobility impairment
Argentina
UN-TREATY OF 13.12.2006
RIGHTS OF PERSONS WITH DISABILITIES
SIGNED BY THE BELGIAN GOVERNMENT ON 31.03.2007
RATIFIED BY THE REGIONAL PARLIAMENTSSPRING 2009
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 13.12.2006RIGHTS OF PERSONS WITH
DISABILITIES
PREAMBLE
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
RIGHTS-Equality before the law withoutdiscrimination-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
Right to live in the community
People with disabilities are banned to the outskirts of society. They are made invisible
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
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.
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
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
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
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
List of priorities1.Personal assistance2.Social housing3.No discrimination on the labor market4.Professionalising of the care, extra-training for personeel of institutes5.Quality control6.Benefit boven the overtyp limit7.Continuïteit in mediaal and paramedical care8.Proactive support in order to prevent a negative psychosocial spiral, which ends in apathy, depression and poverty9.Equal access to insurances10.Adapted inclusive education or, if need be, in specialised institutions