Transcript WERKGROEP HERSENTUMOREN vzw

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
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 Reina
Researcher 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 PARLIAMENTS
SPRING 2009
UN-TREATY 13.12.2006
RIGHTS OF PERSONS WITH DISABILITIES
PREAMBLE
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
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
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
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 priorities
1.
2.
3.
4.
Personal assistance
Social housing
No discrimination on the labor market
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
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