Research into practice

Graham Hopkins looks at new research that
offers pointers as to how respite care for disabled children might
be better provided in future

Respite care for children with disabilities
was once seen exclusively to be a service that gave carers a rest,
but it is now recognised that it ought to be a stimulating
experience for children as well. New research, commissioned by the
Spelthorne Forum for Children with Disabilities, echoes carers’
desires that not only should respite care be stimulating, but,
importantly, it should also be flexible and local.

Carers, unsurprisingly, expressed different
needs, preferences and priorities, but these were largely
constrained by limited service availability. However, respite
provided in a local care unit would mean that children with
disabilities:

– Could socialise with each other (something
that only happens rarely).

– Gain a degree of independence by being away
from their families and home.

– Could be cared for by a team of staff,
giving carers a greater sense of safety.

Government guidance concedes that many carers
have described the process of accessing services in terms of
“hurdles to clear, hoops to jump through and barriers to
overcome”.¹ This research simply confirms that.

A lack of local services in the Spelthorne
area of Surrey means that carers have lengthy return journeys to
reach respite units. A long journey sometimes serves only to
over-excite or unsettle a child – and for some, such an unfamiliar
trip can be terrifying. In addition, the distance travelled makes
respite impractical if it is just for the day or overnight.

Research shows that carers and children were
unhappy that respite units only catered for children up to a
certain age, after which they move to another unit. Relationships
are lost and the transition is frightening, particularly for those
children for whom a dislike of change is an inherent part of their
disability.

The research confirms previous findings that
for carers, “the main sources of disappointment were the lack of
available care in times of need, the pattern of breaks on offer or
insufficient flexibility in booking arrangements.”² One
example demonstrates the inflexible nature of services. A parent
said that her son – who was frightened by unfamiliar surroundings –
would only agree to respite care if his sister could go with him.
But this was not permitted.

Carers questioned the bureaucracy of the
application process. Why, they wondered, did they have to reapply
every year, providing a great mass of detail that remained
unchanged from year-to-year. An important implication for practice
is the suggestion that carer and child details should be
computerised and stored centrally – and updated as necessary.

A clear message from this research is that
there is a need not necessarily for more services, but for more
appropriate services. Carers, for example, saw and treated services
such as holiday schemes and after-school groups – much missed out
on by children with disabilities – as opportunities for respite,
even though these are not designed necessarily with that function
in mind.

Indeed, listening to what carers and their
children need, and then redesigning services to match those needs
as closely as possible, is the touchstone for a quality service.
The research rightly concludes that “the key point is that greater
carer and user involvement in service planning and implementation
will produce more effective services.”

– Children with Disabilities and Respite
Care by Linda Dolan and Monica Dowling, department of social
and political science, Royal Holloway, University of London, Egham,
Surrey TW20 0EX, 01784 443149. The research was commissioned by
Spelthorne Forum for Children with Disabilities.

References

¹ DoH, SSI, Disabled
Children: Directions for their Future Care, Stationery Office,
1998

² C Robinson, K Stalker,
“Parents’ views of different respite care services,” Mental
Handicap Research 7 (2): 97-117