New Paradigm of Medical Care for Persons with Disabilities

1
New Paradigm of Medical Care for Persons with
Disabilities

• Conclusions and the Way Forward
• 12 December 2007

2
Research Question for the Initiative has been
reframed as follows

• Persons with disabilities, having similar needs
  of opportunities for development, if they come
  together in a group, can they learn self-care and
  play a more active role in improving their own
  quality of life?

3
Experiences presented in the meeting from

• Colombia
• India (2) experiences from Philippines Sri
  Lanka
• Ethiopia

• Italy
• El Salvador
• Domenican Republic

4
Other CBR programme participating as observers,
from

• Mongolia
• Nepal

• India

5
International organisations represented

• Coordinators
• Disability Rehabilitation team of World Health
  Organisation (WHO/DAR)
• Italian Association Amici di Raoul follereau
  (AIFO)

• Collaborations
• Disabled Peoples International (DPI)
• IDEA International

6
Experiences in Participating projects some where
between two extremes

• Group as a place
• where persons open,
• share, unite as a
• collective in the
• negotiation with
• health professionals

Group as a collection of individuals
who negotiate individually with Health professiona
ls
7
Networks Circles of Influence
8
Existing relationship between professionals
(experts) and Persons with disabilities
(objects of rehabilitation)
Psychologist
Physical medicine doctor
Social worker
Physio- therapist
Person With Disability
9
Desired changes (1) recognition of
group/association of persons with disabilities as
experts with specific competence in care
(2) Both ways dialogue between persons with
disabilities and Professionals that respects
right of persons to choose
Social worker
Psychologist
Medical Specialist
Ass/Group of Persons with Disability
Person with Disability
10
CHANGE of Paradigm proposed by UN CONVENTION

• Disease
• Treatment
• Cure

• Effects of disease/s or long term disease
• Removing barriers
• Empowerment
• Human Diversity

11
Specific competences of Persons with Disabilities
as part of professional Team

• Advocacy issues, knowledge about rights
• Issues related to accessibility of buildings,
  sign language, braille issues, attitutdes
• Mediators between persons with disabilities and
  professionals peer counselling, support,
  sharing of experineces and skills
• Disability experience, what it means to live with
  disability life issues like sexuality, family,
  
• Involving parents/families in the process
• (For some of these competences, persons with
  disabilities need to develop new competences)

12
Engaging in dialogue with Professionals for
change of paradigm

• Some times individual persons with disabilities
  can also engage in this dialogue, however often
  it is easier to promote this dialogue if persons
  with disabilities (and/or families) are organised
  in groups or associations

13
Promoting setting up of new Groups of persons
with disabilities (if they do not exist) (1)

• Creating groups is a long term process can not
  be hurried
• It requires a facilitator, someone who takes
  initiative in the begining to organise (when,
  where, how..) may or may not be a group member,
  it helps if s/he knows some key group members
  over period of time, external facilitators can be
  joined by persons from the group

14
Promoting setting up of new Groups of persons
with disabilities (if they do not exist) (2)

• Group must identify common interests of members
  and answer a need
• Gender, different disabilities, social status,
  educational status, ethnic groups, etc. can each
  influence how group is formed functions
• If facilitator/leaders know professionals, may
  help in the dialogue

15
Conclusions (1)

• Answer to the question Persons with
  disabilities, having similar needs of
  opportunities for development, if they come
  together in a group, can they learn self-care and
  play a more active role in improving their own
  quality of life? is Yes
• The key issue is of empowerment and promoting
  groups of persons with disabilities can promote
  empowerment for this, Group is a space for
  sharing, exhanging, learning.
• It is a win-win situation where professionals
  have opportunity for working better with greater
  job satisfaction and persons with disabilities
  improve their quality of lives and are empowered.

16
Conclusions (2)

• Learning about self-care can be an entry point
  for creation of groups of persons with
  disabilities, who may later decide to become
  formal associations
• Professionals may have knowledge of diseases,
  treatments etc. but they need to engage in
  dialogue with persons with disabilities and/or
  families for a more complete understanding of
  their needs of self-care
• Professionals need to use simple language with
  hands-on practice to teach self care
• Discussions about self care needs may require
  considerations of gender, kinds of disabilities,
  language needs, ethnic diversity, etc.

17
More Questions areas that need more understanding

• Dealing with conflicts or diversity of opinions
  between professionals and persons with
  disabilities
• Implications in terms of quality of life
• Implications in terms of cost-benefit of services