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Inclusive Communities = Stronger Communities
GLOBAL REPORT ON ARTICLE 19: THE RIGHT TO LIVE AND BE INCLUDED IN THE COMMUNITY
UNITED STATES Shareen is the
mother of a beautiful son, Stefon,
18, who has multiple disabilities,
including Angelman syndrome (a
genetic deficiency of the 15th
chromosome), cerebral palsy, an
intellectual disabilities, epilepsy,
asthma, language impairment, and
neuromuscular scoliosis. Stefon uses
assistive devices for ambulation and
requires support 100% of the time.
For many years, Shareen was unable
to work and unable to afford the type
of services her son required. She and
her son lived in distressed
neighborhoods in public housing and
relied on food stamps to survive.
Supports to Families
Our members report that families are the main source of
support to people with intellectual disabilities wherever
they live in the world. Families not only provide care, they
support participation in the community (education,
employment, recreation, building relationships and
accessing services). Yet families report that they receive
little or no support from governments or the community
to fulfill this role.
Our focus groups of self-advocates consistently recognized
the support provided by parents. A Spanish participant
said, “I get a lot of support from my family. I know very
well that without their help to pay my rent I never would
have been able to leave home for a place of my own.”
Countries such as Japan and China have policies clearly
stipulating that the responsibility for persons with
intellectual disabilities rests with their families. Other
countries may not have explicit policies, but families feel
that responsibility. In a major survey done by The Arc of
the United States in 2010 families reported the failure of
communities to support them in their role.
“While families continue to be the primary source of support
and care for people with people with intellectual disabilities,
the promise of community support to lighten the load is not
being met. Parents, siblings and family members struggle
mightily so that their family member with intellectual
disabilities can continue to live at home, or independently,
and have a typical life. The majority of families report that
they provide personal care – such as bathing, feeding (61%),
administer medications (69%), provide direct financial
support (72%), maintain the home (74%), manage financial
affairs (78%), arrange/monitor outside services (76%), make
social arrangements (76%), cook, clean and do laundry (80%),
provide transportation (84%) and emo¬tional reassurance
(86%) and more.