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.