Life Situations of persons with disabilities in Life Situations of persons with disabilities in Developing CountriesDeveloping Countries

Community Based Rehabilitation:Involving the Family

By:

Hissa Al-Thani

Special Rapporteur on Disability

The last three decades witnessed important achievements for persons with disabilities.

Building on the Universal Declaration of Human Rights and other Covenants and

Conventions.

The Disability movement left its mark on the wall of history:

The UN Decade of Disabled Persons (1983 – 1992 )

The universal adoption of the Standard Rules on the Equalization of Opportunities for Persons with Disabilities in 1993

The Growth of number and membership of the Organizations of Persons with Disabilities worldwide.

Despite all these achievements the Despite all these achievements the situation of persons with disabilities is situation of persons with disabilities is far from reaching its goals and has a far from reaching its goals and has a

long way to go. long way to go.

Persons with disabilities, particularly in the

developing world, are trapped in a cycle of

poverty and exclusionpoverty and exclusion

GirlsGirls with disabilities in developing countries as twice as likely to suffer neglect than boys.

An estimated 170 million170 million children are malnourished.

1 in 10 children has a developmental disabilitydevelopmental disability. .

More than 80% of people with disabilities and their

families live in the developing world

((500500 MILLOINMILLOIN))

FACTSFACTS

In the recent In the recent World BankWorld Bank meeting that I attended meeting that I attended in Washington to discuss the in Washington to discuss the Global Partnership Global Partnership for Developmentfor Development, Mr. James Wolfensen, World , Mr. James Wolfensen, World

Bank President stressed that :Bank President stressed that :

unless the issues of people with disabilities are unless the issues of people with disabilities are brought into the development agenda, it will not brought into the development agenda, it will not be possible to meet the Millennium Development be possible to meet the Millennium Development

Goal on poverty reduction by the year 2015.Goal on poverty reduction by the year 2015.

AccordingAccording to paragraph 25 of the Introduction to the Standard RulesStandard Rules, the term "rehabilitation" refers to

"a process aimed at enabling persons with disabilities to reach and maintain their optimal physical, sensory, intellectual,

psychiatric and/or social functional levels, thus providing them with the tools to change their lives

towards a higher level of independence." towards a higher level of independence."

Defining Rehabilitation

In the early 1980 the United Nations World Programme of Action Concerning Disabled Persons along with the WHO through their

programme of Disability Prevention and Rehabilitation, initiated the concept of

Community Based Rehabilitation (CBR).Community Based Rehabilitation (CBR).

During the past 15 or so years there has been a substantive and substantial growth in the number of CBR programmes in many developing countries. [1]

With this grew the understanding that CBR needed to deal with issues related to the lives of Persons with Disabilities and taking into consideration the context in which people with disabilities live.

Why CBR in Developing Countries??

Rehabilitation Issues and Observations in Rehabilitation Issues and Observations in Developing CountriesDeveloping Countries

Most rehabilitation services are found only in urban centers, and are available only to those families that can afford them

Most of these facilities use methodologies imported from countries of the North without being adapted to the needs of

children with disabilities in their environment.

Parents, particularly less educated, working class or poor parents, are often alienated from their child's rehabilitation

process by cultural and social traditions.

In the Arab world, for example, parents have been indoctrinated in the "doctor knows bestdoctor knows best" philosophy and are often

intimidated by professionals .

Children with Disabilities are always at risk of discrimination and neglect and are particularly

vulnerable when there is a shortage of resources.

An estimated 97% of disabled children in developing countries are denied even the most basic

rehabilitation even in the wealthy developed countries, the birth of a disabled child is almost

invariably viewed as a tragedy.[1]

In many developing countries - specifically in poor rural communities - the involvement of

medical and rehabilitation professionals, where and when it is available, is only at the initial stages, and in the long run a family is

left alone to cope with the needs of that child.

Where rehabilitation services are available and accessible to the family, they usually follow the

top-down model, in which rehabilitation and medical professional "prescribe to and provide for" the child without consulting, involving, informing

or educating the family.[1]

The late Mudhukar Suryavinshi of the International Council for the Education of People with Visual

Impairments, describes a state of "limbo" in which the child finds herself after her rehabilitation is

"completed" where the family is unable to adjust or understand the needs of the child .

CBR:CBR: Building Bridges to the FamilyBuilding Bridges to the Family

Rehabilitation services need to always consider that the family is the first and most important social unit for

the child.

Not only the family is the child's primary care giver, but itcan also be tapped as a rich and vast resource in the

Rehabilitation process of a child with disability.

The first step to involving the family is to show understanding of the feelings its members

are experiencing through a holistic approach to the wider family circle.

Community Based RehabilitationCommunity Based Rehabilitation

The term CBR covers a wide range of initiatives:The term CBR covers a wide range of initiatives:

At one end of the spectrum are At one end of the spectrum are largelarge CBR programs CBR programs launched by launched by government.government.

At the opposite end of the spectrum are the At the opposite end of the spectrum are the small small community community programs run by the programs run by the persons with disabilitiespersons with disabilities, or by , or by familiesfamilies of of children with disabilitieschildren with disabilities

CBR programs in developing countries are popular and successful not only in rural and remote areas where

services are hard to come by, but in urban centers as well.

Is it possible to have CBR programmes, initiated, led and managed by people with disabilities and their families in

every community and which would fulfill the needs of all adults and children with disabilities?

According to a WHO estimate, the needs of 70% of people with disabilities in developing countries could be met at the

community level, while 30% who have severe or multiple disabilities would need special interventions from time to

time of the kind that is not available in the local community.

With the provision of the necessary resources, human, financial and educational, CBR programs can be

made to meet the needs of most children and people with disabilities within their communities

These competing needs and priorities often create friction and contradiction in the delivery of

services and in the levels of commitment to the rehabilitation process.

One of those competing interests especially in developing countries, are the needs of girls and

women with disabilities

Can CBR programs help change social attitudes towards people with disabilities, and women

with disabilities in particular?

CBR programs will need to develop appropriate Strategies to address issues related to traditional, social and cultural Perceptions through awareness raising .

Women's organizations in developing countries need to be educated to include the rights disabled women

Policy Recommendations for Effective CBR in Developing Countries

Establishing community based rehabilitation programs that are inclusive sensitive, and

democratic in their approach

Initiating CBR Programs in rural, tribal, remote communities in developing countries with the help

of professionals and experts whose aim is to empower people with disabilities and their families

Encouraging NGOs to work with the medical community and to sensitize it to the practical ,emotional and

psychological needs of families of children with disabilities

Soliciting the support of international DPOs in establishing, launching, and training small communities

in the South to take the lead in CBR initiatives

Raising community and social awareness, through targeted CBR services, to the needs of

girls and women with disabilities

Encouraging children with disabilities to become role models for other children

Encouraging adults with disabilities to take leadership roles in CBR programs targeted to children with

disabilities and their families

Allowing children with disabilities to exercise their right in voicing their needs and their aspirations

Providing education and employment opportunities for children and adults with disabilities and enabling

them to become full participating members of society

Promoting collaboration between NGOs, DPOs and agencies as UNICEF, UNESCO to ensure that the needs

of girls with disabilities are included in programs targeted at girls in developing countries