Family Futures

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Whether in rich countries or in poor ones, families bear

almost all the responsibility for supporting their disabled

members. The vast majority of people with intellectual

disabilities live at home with their families, with little or no

services or support from their communities or governments.

A mother from Bahrain said: “Of course, being a mom is not

just being a mom. You have to be the CEO, the treasurer, the

lawmaker, the good cop and bad cop, a friend, an adviser, a

sympathetic listener and much more. All this has to be done

on a 24/7, on-call service.”

But there are hopeful signs that the situation is changing. In

2006 the United Nations adopted the Convention on the Rights

of Persons with Disabilities (CRPD) which, as of February 2014,

had been ratified by 141 countries. The CRPD promotes the

rights and full inclusion of people with disabilities by rejecting

outmoded and negative stereotypes and recognizing them as

contributing citizens. The CRPD recognizes the rights of persons

with intellectual disabilities to receive the support they need to

exercise their rights. It also requires communities to remove

barriers to their participation and to promote their full inclu-

sion. The CRPD also recognizes that families have a role to play

in ensuring that persons with disabilities can exercise their rights,

and that they require assistance to support their family members.

Some countries have introduced policies to support families.

Panama has given grants to families of persons with intellec-

tual disabilities to help them start small businesses to reduce

family poverty. The United Kingdom has given support to

families to take short-term breaks. The Canadian tax system

compensates families for some of the additional costs of caring

for a child with a disability. Costa Rica includes a disability

targeted transfer as part of its family allowances. South Africa

has a means-tested programme that provides support to fami-

lies who have a child under the age of 18 with a disability.

Research has shown that families of children with intellectual

disabilities often experience a lot of stress. However, further

research has found that this stress is not caused by the disabil-

ity, but by a lack of support to the family, and by the persistent

exclusion of the person with a disability from ordinary commu-

nity activities. Families from the Middle East to Europe, from

Asia to Africa and throughout the Americas describe this

hurtful exclusion from school, from recreation, from religious

institutions and from extended family gatherings.

Unfortunately a large proportion of the resources currently

devoted to assisting people with intellectual disabilities actually

reinforces their exclusion, rather than inclusion. Governments,

donors and international agencies too often fund residential

institutions, segregated schools, special recreation programmes

and separate vocational programmes instead of investing in the

regular systems to make them inclusive of everyone.

A young woman from the Netherlands talked about being

excluded: “Please go on with your efforts to send all children

to school. Not to special schools where they will be treated as

special monsters, not capable of learning, but to regular schools. I

was treated as a monster –not human–because I cannot speak

or show easily what I think. I want to tell the world everybody

should be treated as human beings even when they can’t speak.”

A mother from South Africa reported: “We heard that a group

was starting a campaign for Education for All, but when we tried

to join the coalition we were told they didn’t mean our children.”

But there are also stories of how communities are strength-

ened when people who have intellectual disabilities are included.

Inclusive education is a prime example. When childrenwith intel-

lectual disabilities can go to the same school as their brothers and

sisters and other children from their neighbourhood, everyone

benefits. Mothers have a better chance of contributing to house-

hold income if their disabled child goes to school and doesn’t

require full-time care. The changes required for an education

system to be able to educate children with intellectual disabilities

–qualified teachers who know how to teach children with differ-

ent learning styles, cooperative learning where students help each

other, adapting the curriculum for the needs of students, having

The CRPD requires communities to remove barriers and promote the

full inclusion of persons with intellectual disabilities

Image: IHC and Hyndman Family

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