We promote family-centred support for these
babies, children and young adults because we know the whole
family is affected by the child’s condition. While acknowledging
that the disabled child brings many positive attributes to
the family, as do all children, we are also aware that the
child’s condition and needs can bring great challenges to
parents, brothers and sisters, grandparents and other close
family members and friends, and of course to him or herself.
By listening to families we
know that –
- many families feel isolated, lost and abandoned
after they first learn of their child’s condition.
- many families struggle to get accurate information
about their child. Parents often suspect some things are being
kept from them
- many families struggle to learn what support
could be available to them locally
- many families have to fight to get effective
support for their child and family.
We also know that when the child
has multiple disabilities or complex needs the various professionals
who become involved usually all work separately giving fragmented
and piecemeal support. This can leave the child and family feeling
worse off than they were before the help arrived.
In response to this, the Handsel
Trust, a UK-wide organisation, has been working since 2000 to
promote the support needs of these children and families. Out
three-fold aim is to –
- Help get the voices of parents, children
and other family members into planning of support services
- both locally and nationally
- Promote Keyworker and Team-Around-the-Child
(TAC) models of family-centred support
- Raise awareness about unmet needs of these
children and families in the UK.
|
