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

Where does our country not take sufficiently into account these principles

and rights ?

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

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