Background
to the
Research
- Improvements in healthcare
have lead to unprecedented population ageing, which has profound implications,
especially for ageing parents who continue to be the main carer for
adult sons and daughters with disabilities. While two reports, Valuing
People and Valuing Carers, demand that service providers must have
plans for all individuals with learning disabilities who live with
older carers and ensure service user choice and control, health and
social care systems have not kept pace.
Research
Approach
- This report is based on interviews with
29 parents reporting on 27 adult sons and daughters with disabilities
in which issues were explored in relation to present life circumstances,
support from family and service providers, levels of health and impairment,
and future planning.
Main
Findings
- Findings exposed high levels of commitment
and love for sons and daughters, often in the face of severe disabilities
and carers' ill health.
- Carers experienced twice the level of psychological
stress than the general population and had to make life adjustments
that do not concur with expectations of peers who have typically developed
adult sons and daughters. They faced worry and loneliness, experienced
severe lack of statutory support and reported near non-existence of
futures planning, especially in cases with highest levels of impairment.
A complex pattern of social and psychological interdependence became
apparent.
- 38% of the carers were over pensionable
age (range 47-84 years); average age of sons and daughters with disabilities
was 33.48 years.
- Caring was a full-time job for 90% of
the participants and included physical care in 86% of the cases.
- Concern about psychological health of
carers was twice that of the general population (35% vs 17%).
- Participants (79%) enjoyed spending time
and going out with their sons and daughters with disabilities.
- The greatest challenges for participants
(86%) were lack of respite, dealing with difficult behaviours, including
physical aggression, and meeting sons/daughters' social needs.
- 69% of the participants received support
from their family, while 31% did not have any family support.
- Only 14% of participants received help
from friends or neighbours.
- 79% of the participants did not have a
care plan for their son/daughter with disabilities, although care
arrangements had changed over the years in 69% of the cases.
- 66% of the participants had discussed
necessary changes with social services and 36% did not receive help
or had to fight for help.
- Most of the participants (76%) stated
that their own health was good or fair, despite suffering from various
health problems.
- Two-thirds of the participants (67%) relied
on informal family arrangements in case the main carer fell ill; in
48% of cases there were no adequate substitute care arrangements.
- Most of the participants (72%) had not
considered making long-term plans for the future care of their sons
or daughters with disabilities.
Conclusions/Recommendations
- A highly complex picture of interdependent
relationships emerged. On the one hand, ageing adults with disabilities
clearly are vulnerable and require physical and social care as well
as protection. Many of the problems identified in this research are
a legacy stemming from a lack of investment in early behavioural intervention
that leads to limited choices and restricted behavioural repertoires.
On the other hand, ageing parents and carers are vulnerable and require
support; at times they too require physical and social care.
- Many of the problems described by ageing
carers are due to the lack of science-based training for professionals,
a deficit in available services and a system too dependent on ageing
carers carrying the full responsibility.
- Participants felt responsible for their
offspring in a way that differed from parents of typically developing
adults. While obviously most parents feel a high level of responsibility
for their children, even after their offspring have matured into adulthood,
participants felt it differently. They did not want to burden their
other children with caring responsibilities in the future and they
did not want to expose their grandchildren to the experience of living
with an uncle or aunt with disabilities.
- This report exposed a societal response
to adults with disabilities that may be described with the precept
'Why should we care, they are not our children?' Findings reported
here show that society will not be able to keep its head in the sand
for much longer. Given that a large number of parents are at an advanced
age, the societal time bomb of caring for older adults with disabilities
is about to go off.
- Evidence-based early interventions need
to be in place to enhance life skills and choices of individuals with
disabilities.
- An advocate should be available to each
family throughout the life span, to help set up and coordinate appropriate
networks of support well in advance.
- Suitable alternative accommodation needs
to be available for adults with all levels of additional individual
needs.
- Support services for adults with disabilities
who live at home and their carers should be easily accessible, especially
in rural areas.
- Education and training for service providers
needs to focus on evidence-based best practice to meet the needs of
these families.
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