Protection of people with disabilities in

emergencies

Matilde LeonardiMD, Neurologist , Pediatrician

Istituto Neurologico Carlo Besta, Milanformer President CTS

National Observatory on DisabilityWHO Expert on Disability

ROMETHURSDAY

2ND OCTOBER 2014

Informal Meeting of the Council Working Party on Humanitarian Aid and Food AidCOHAFARome, 2-3 October 2014

Article 11 - Situations of risk and humanitarian emergencies

States Parties shall take, in accordance with their obligations under international law, including international humanitarian law and international human rights law, all necessary measures to

ensure the protection and safety of persons with disabilities in situations of risk, including situations of armed conflict, humanitarian emergencies and the occurrence of natural

disasters.

Framework

European strategy on disability (2015-2020)

Point 8 – External action

(…) raise awareness of the UN Convention and the needs of people with disabilities, including accessibility, in the area of emergency

and humanitarian aid; consolidate the network of disability correspondents, increasing awareness of disability issues in EU

delegations; ensure that candidate and potential candidate countries make progress in promoting the rights of people with disabilities and

ensure that the financial instruments for pre-accession assistance are used to improve their situation.

Framework

European strategy on disability (2015-2020)

Key actions for point 8

Ensure that the specific needs of persons with disabilities, including those who are disabled as a consequence of natural and man-made disasters, are properly assessed and addressed in the area of emergency and humanitarian aid outside the EU

Support the national efforts of partner countries for the signature, ratification and implementation of the UNCRPD

Update the Guidance Note on Disability and Development to be in line with the UN Convention on the Rights of Person with Disabilities

The Italian National Observatory on the Condition of Persons with Disabilities

The Italian National Observatory on the Condition of Persons with Disabilities represents a complex instrument created to monitor the UNCRDP implementation in the country (after CPRD was ratified in 2010) and to analyze, improve and enhance information about disability.

The preparation of the Italian Disability Action Plan has been one of the most noteworthy tasks of the Observatory. It represents the Italian strategy for disability and is constituted by 7 Action Lines.

The Italian Disability Action Plan has been approved and ratified by the Parliament in 2013

DECRETO DEL PRESIDENTE DELLA REPUBBLICA 4 ottobre 2013Adozione del programma di azione biennale per la promozione dei

diritti e l'integrazione delle persone con disabilita'. (13A10469)(GU n.303 del 28-12-2013)

The Italian Disability Action Plan is the result of an intense 3 years work inspired by the six working groups (each of them ‘chaired’ by a DPO member) that produced 7 action lines

1. Right to life, health and care2. Disability eligibility3. Independent living and empowerment of the

people with disability4. School inclusion5. Work for people with disability and social

security6. Accessibility and universal design

+

The Italian National Observatory on the Condition of Persons with Disabilities

+ Cooperation (Action 7)

Italian Disability Action Plan – Action 7

Actions plannedDisability awareness of the Ministry of FA personnel

Raising awareness of the rights of persons with disabilities as per art. 8 (awareness-raising) of the CRPD is the leitmotiv and one of the top priorities of the Action Plan. Under this article, State Parties undertake to adopt effective and appropriate measures:

• To raise awareness of persons with disability throughout society and to foster respect for their rights and dignity;• To promote the dissemination of an inclusive culture based on new development paradigms;• To combat stereotypes and prejudices;• To promote awareness of the capabilities of persons with disabilities and of their contribution to society.

Actions planned

Setting up a monitoring system

The implementation of the Action Plan will have to be monitored. […] The goal is to develop a set of procedures permitting to incorporate disability concerns into all the projects funded by the Italian Cooperation (including those not targeted at disabilities) and assess their implementation, as well as their impact on their final recipients.

Open-ended questionsref. Disaster, disability and rehabilitation

What are the consequences of a disaster?

What responses should be taken after a disaster?

What kind of rehabilitation services should be developed in the long-term?

Also in response to art 4. of CRPD how to INVOLVE PwD in developing responses to disasters?

Disaster, disability and rehabilitation

For survivors with existing disabilities, the following issues may be of particular concern.

•In comparison to their non-disabled peer, persons with disabilities can be more at risk during disasters.

•Many persons with disabilities lose their assistive devices during disasters, including artificial limbs, crutches, hearing aids and spectacles.

•Persons with disabilities can have greater difficulty in accessing basic needs, including food, water, shelter, latrines and health care services.

•Rehabilitation infrastructure is destroyed and rehabilitation personnel, including the caregivers of persons with disabilities, may be killed or injured or diverted to other tasks.

Disaster, disability and rehabilitation

For survivors with injuries and/or newly acquired disabilities, the following issues may be of particular concern.

•Untreated or inadequately treated fractures and infected wounds may lead to severe and long lasting disabilities.

•Referral of these survivors to appropriate health facilities often become difficult.

•There is a scarcity of rehabilitation personnel and infrastructure poised to handle a new generation of persons with disabilities

•Many survivors with newly acquired disabilities will struggle with the loss of their livelihood, an additional consideration for them and their families.

How to use DISABILITY as an indicator:

Measuring Disability and Health in Emergencies: implementing a disability survey using WHODAS 2.0 in the Typhoon Yolanda affected

areas of the Philippines

Typhoon Yolanda struck the Philippines on November 8, 2013 with strong winds of over 300 km/h. It was one of the strongest tropical cyclones ever recorded. The death toll has reached 6.300 and many provinces were affected.

In response to this massive devastation, the WHO Regional Office for the Western Pacific, in consultation with the UN Humanitarian Inter-Cluster Coordination Group decided to conduct a survey on post-typhoon disability and health functioning profiles of people affected.

Measuring Disability and Health in Emergencies: implementing a disability survey using WHODAS 2.0 in the Typhoon

Yolanda affected areas of the Philippines

The main aim of this survey is to provide detailed information on affected populations’ ongoing health functioning and disability problems as well as to provide a broader base for humanitarian support to people affected.

The Survey Protocol includes socio-demographic questionnaire, household questionnaire and WHODAS 2.0- Disability Assessment Schedule.

WHODAS 2.0 was provided by WHO HQ, and modified for field application by

WHO Regional Office, the Social Development Research Center (SDRC)

of De La Salle University, and Inclusive Development and Empowerment Agenda (IDEA)

from the Philippines and the Neurological Institute Besta of Milan, Italy

.

Measuring Disability and Health in Emergencies: implementing a disability survey using WHODAS 2.0 in the Typhoon Yolanda

affected areas of the Philippines

•A field training was prepared by Besta Institute and performed by a WHO expert in the area of disability studies and by researchers of SDRC and IDEA to 40 interviewers, men and woman from Tacloban area, Leyte island. Some had previous experiences on surveys, there were teachers, social workers, phychologists, nurses and community workers among the field staff.

•Data collection was conducted from May 25 to June 30, 2014 and July 17-18, 2014 after a pilot study on 100 cases.

•A sample of 1982 adult people has been interviewed by researchers of the Social Development Research Center (SDRC) of De La Salle University and the Inclusive Development and Empowerment Agenda (IDEA).

•People interviewed came from 12 different Barangays.

.

Socio-demographic characteristics(N=1.982 people 18+)

80%

20%

Male

Female4% 11% 17%

68%

Never married

Married/Cohabiting

Separated/divorced

Widowed

Gender

85%

10% 5%

Leyte

Eastern Samar

Samar

Age (years)Mean (sd) = 42.89 (± 17.2)Range = 18-96

Marital status

Province

WHODAS 2.0 normative & after Yolanda

WHODAS 2.0 is composed of 36 item and assesses functioning, disability taking into account person’s difficulties in performing different activities caused by health condition and in the environment in which they live.

WHODAS 2.0 covers six domains:

1. cognition,

2. mobility,

3. self–care,

4. getting along,

5. life activities,

6. participation. Items are based on a scale 1–5 and the overall score ranges from

0–100 with higher scores indicating higher disability levels

Disability overall score after YolandaFrom analysis of data collected it is possible to derive a summary disability score that provides information on the levels of disability of the population if compared to population norms the so called Disability Overall score

Healthy Population norms: Mean value: 6

Populations with diseases norms:Mean value range:

22(Alcohol abuse) - 34(Mental Health problems)

Survivors of Yolanda Typhoon (theoretically a general population) show much higher

disability levels than norm

Mean value: 17

Lessons learned

DISABILITY can and should enter as an indicator in emergency monitoring and relief plannig.

The innovative approach used in the Philippines, that considers functioning and disability profiles together with tailored socio

demographic information, allows better public health planning and improvement in policies and interventions.

It is necessary that EU countries share good practices ( but also failures!) and adopt common lines of action in

humanitarian interventions using common and shareable indicators of effectiveness.

All stakeholders should participate in this European exercise: Governments, DPOs,experts, Universities ..

EU report to UN on CRPD art 11Resources:

The EU is the world’s biggest donor of humanitarian aid. Together, Member States and EU institutions contribute more than

half of official global humanitarian aid. Council  Regulation  1257/96/EC  concerning  humanitarian aid governs 

the implementation of all EU operations providing humanitarian assistance. Assistance is delivered in accordance with the European

Consensus on Humanitarian Aid, a joint statement issued by the Council and the Representatives of the Governments of the Member States, the

EP and the Commission in December 2007.

SUGGESTED ACTIONNon Discrimination and Equal opportunities for all European citizens

also in emergency situations should be human rights operationalized through common and shared technical instruments:

consider the evaluation of population functioning and the use of disability score.

Towards a European emergency plan

Council regulations, UNCRPD, EU Disability strategy, WHO instruments and national Disability Action plans should

provide a European framework with common humanitarian aid principles.

The Council states that in responding to humanitarian need, particular vulnerabilities must be taken into account and that

the EU will pay special attention to women, children, the elderly, sick and disabled people, and to addressing their specific needs.

The Disability Strategy commits the EU to raising awareness of the CRPD and the needs of people with disabilities, including accessibility, in the

area of emergency and humanitarian aid.

THUS…..

Towards a European emergency plan

It is necessary that following the sharing of good praxis and in line with CRPD principles, ratified by EU, and

with point 8 of Disability plan

a common European strategy for PwD during Humanitarian interventions in emergencies

is developed.

This could be done starting from technical consultations involving all stakeholders in the near

future.

Disasters must be an opportunity to challenge prejudice and discrimination and

to ‘build back better,’ by ensuring the inclusion of all women and men. Adults and

children living with disabilities have an essential role to play in strengthening

resilience before and after disasters.            Irina Bokova, Director-General of UNESCO

leonardi@istituto-besta.it

Matilde Leonardi, MDNeurologist , Paediatrician

Head Neurology, Public Health, Disability UnitScientific Director Coma Research Centre

Director Italian WHO-FIC Collaborating Centre Research Branch Fondazione IRCCS Istituto Neurologico Carlo Besta

Via Celoria 11-20133 Milan- ItalyTel +39 02 2394 2511/ 2521(Secretary)

Fax +39 02 2394 2442E-mail:leonardi@istituto-besta.itwww.headnetgroup.it