Robin Miller picks out key research findings to help care planning for disabled people and their families
Involvement of disabled children and young people in decision-making was explored in a survey of all social services departments in England and in-depth analyses of six areas.
Few disabled children were involved in service development and participation in decision-making was also limited.
Barriers included lack of a shared understanding, reliance on a few key staff and practicalities such as lack of suitable venues and accessible tools.
Involvement can be encouraged through a whole-systems approach which includes a culture of participation, communication training, inter-agency working and staff having the time to take an individual approach. Feedback to children – not just to their parents – is also vital.
● Encounters in close care relations from the perspective of personal assistants working with persons with severe disability, Health and Social Care in the Community, 18, 2, 180-188 (Ahlstrom and Wadensten; 2010)
This study from Sweden is part of a programme exploring the relationship between disabled people, their families and personal assistants employed through direct payments.
Thirty-two personal assistants were interviewed. They identified that the relationship was strengthened through an understanding of the unique needs of their employer, positive “personal chemistry” and shared common interests.
Difficulty in reconciling their roles as “paid employee” and “personal friend” was common, and this could lead to the assistants perceiving that they were seen as a “tool” rather than a “valued person”.
Based on interviews with relatives visiting family members staying in short-break facilities, this reflects the experience of caring for someone with multiple sclerosis from the initial stage of emerging symptoms through to end of life.
There is the potential for considerable disruption to the family system and previous roles and relationships as caring becomes the main focus. Carers’ assessments need to be holistic and recognise that family support needs will change as the illness progresses.
Transition to adulthood
Improvements in health care allow young men with DMD (an inherited neuromuscular disease) to live beyond childhood.
Through a postal survey and in-depth interviews with the young men and their families, this research investigated the transition to adulthood. Although experiences were mixed, most families were unclear about the process and parents felt that they had to take the lead to “sort things out”.
The young men attending college were on the whole positive about the chance to make friends and be part of a more adult environment, but both they and their families found it difficult to plan long term due to their uncertain life expectancy. The study shows the benefits of an allocated social worker providing co-ordination during the transition period and the need for social care to work with other agencies to support the individual and their family.
Using interviews, group discussions and observations, the experiences and perceptions of disabled children and their families regarding short-break services were collated.
The services accessed included residential care, after-school and holiday clubs, and whole family activities. Benefits included increased social contact for the children, siblings having time with their parent(s) or to pursue their own interests, and for parents to have a psychological and physical break from their caring responsibilities. Conflict with local authorities on access to services (including transport) and what constitutes a short break was common. Flexibility to decide their own outcomes and use available funding to access (or design) mainstream and specialist resources is key to increasing the impact of short breaks.
Digest of the Digest
● Meaningful involvement requires an individual approach, enough time and appropriate resources (including training).
● The relationship between personal assistants with their individual employer is complex.
● The support needs of family carers changes in relation to a disabled person’s life stages and the progression of their condition.
About the author: Robin Miller is a senior fellow at the Health Services Management Centre/ Third Sector Research Centre at the University of Birmingham
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