AsuncionNovember, 2015

Childhood Disability:a fundamental issue in national and international public policy

Hans Forssberg, MD, PhDNeuropaediatrics, Karolinska InstitutetChairman IAACD

Sir Michael Marmot2008

http://www.who.int/disabilities/world_report/2011/en/index.html

http://www.unicef.org/sowc2013/

WHO, CBR Guidelines 2010

• 10% of world’s population• 80% in developing countries• Poverty• No rehabilitation services• No assistive devices• No education• No employment

The Key Messages from International Reports

Improving child development outcomes has become a priority in future goals

Children with disabilities have an equal right to benefit from this focus

The international advocacy tools are in place but require government and civil society commitment

Hans Forssberg 3 maj 2023 4

International Agenda on Childhood Disability

Civil society commitment: Who will be committed to advance the agenda?

What shall be achieved?

3 maj 2023Hans Forssberg 5

Health professionals in partnership with families can play a key role

Experience and expertise in childhood disability Relationship of trust with the children and their

families Insight and engagement in community life and

capacity to work across sectors Capacity to influence decision-making

Community-levelNational level International level

Individual missions are good – but not enough3 maj 2023Hans Forssberg 6

Important Historical Improvements in Management of Childhood Disability

From Institution to Inclusion Medical Model to ICF Model (participation) Doctor Centered to

Family & Community Based Care Takers to Academic Professions Empiric Art to Evidence Based Medicine

Important Historical Improvements in Management of Childhood Disability

From Institution to Inclusion Medical Model to ICF model (participation) Doctor Centered to Family & Community Based Care Takers to Academic Professions Empiric Art to Evidence Based Medicine

Hans Forssberg

aims to ensure that all children and young people with intellectual disabilities are fully participating members of society, living with their families, integrated in the community and receiving health care and support proportional to their needs.

The WHO Europe initiative 2010:

Better health better lives: children and young people with intellectual disabilities and their families

Important Historical Improvements in Management of Childhood Disability

From Institution to Inclusion Medical Model to ICF model (participation) Doctor Centered to Family & Community Based Care Takers to Academic Professions Empiric Art to Evidence Based Medicine

Cerebral PalsyOrthopaedic disease - surgeryNeurologic disorderMotor & cognitive dysfunctionLimitation in activity and participation

ActivityBody function

&Body structure

Participation

Environment Personal factors

Health

Important Historical Improvements in Management of Childhood Disability

From Institution to Inclusion Medical Model to ICF model (participation) Doctor Centered to

Family & Community Based Care Takers to Academic Professions Empiric Art to Evidence Based Medicine

Key activities of CBR-programmeCommunity Based Rehabilitation

1. Training family members and community members on disability

2. Facilitating inclusive education3. Providing specialist services4. Providing assistive devises5. Creating employment opportunities6. Providing support for social activities7. Providing financial assistance

Hans Forssberg WHO, CBR Guidelines 2010

Key activities of CBR-programmeCommunity Based Rehabilitation

1. Training family members and community members on disability

2. Facilitating inclusive education3. Providing specialist services4. Providing assistive devises5. Creating employment opportunities6. Providing support for social activities7. Providing financial assistance

Hans Forssberg WHO, CBR Guidelines 2010

Important Historical Improvements in Management of Childhood Disability

From Institution to Inclusion Medical Model to ICF model (participation) Doctor Centered to Family & Community Based Care Takers to Academic Professions Empiric Art to Evidence Based Medicine

Important Historical Improvements in Management of Childhood Disability

From Institution to Inclusion Medical Model to ICF model (participation) Doctor Centered to Family & Community Based Care Takers to Academic Professions Empiric Art to Evidence Based Medicine

Principles for intervention in childhood disability

1. Evidence based medicine – clinical trials2. Reliable and valid methods to measure

treatment results3. A science based theoretical framework

predicting the treatment results

Hans Forssberg

Novak I et al, 2013

Vision

To globally improve the outcomes and health of children and youth with disabilities by supporting their families and community professionals through an international collaboration in order to advance and share knowledge and to translate this knowledge to practice

International Alliance of Childhood Academies

• MoU in Vienna (July) & San Diego (September) 2014• Set up the Alliance

– Constitution and governance structures– Establishing new academies

• Eastern Africa• Latin America• Mexico• India, Bangladesh

International Alliance of Childhood Academies

International Alliance of Childhood Academies

• MoU in Vienna (July) & San Diego (September) 2014• Set up the Alliance

– Constitution and governance structures– Establishing new academies

• Eastern Africa• Latin America• Mexico• India, Bangladesh

• Global Professional Education Programme • Global Clinical Practise Recommendations • Triennial Meetings

International Alliance of Childhood Academies

5th International Conference of Cerebral Palsy (ICPC) 28th Annual Meeting of the European Academy of Childhood Disability (EACD)

1st Biennial Meeting of the International Alliance of Academies of Childhood Disability (IAACD)

International Conference on Cerebral Palsy and other Childhood-onset Disabilities

www.ICPC2016.org

Save the date!

1- 4 June, 2016