Chapter 5. Conclusion: implications for policy and practice

As the policy of self-directed support becomes widely implemented, disabled young people and their families will require assistance to make the underpinning principle of informed choice a reality.  The policy of self-directed support is attempting to shift the balance of power away from state organisations towards the individual, to increase their ability to control and choose how their support needs are met.  This qualitative study has explored the phenomenon of informed choice and has begun to develop broad hypotheses (‘folk’ theories) based on the accounts (‘folk wisdom’) of stakeholders.

Facilitators to disabled young people having informed choice were found to be related to the following factors:

  • Supportive networks of family and professionals
  • Advocacy
  • Information that was accessible and accurate
  • Experiential knowledge

Barriers to informed choice were seen to be related to:

  • Parents and professionals having low expectations for disabled young people
  • Capacity of the individual to make decisions and their communication skills
  • Lack of integration/collaboration between child and adult services
  • Organisational bureaucracy and risk averse culture

The limitations of the study are that the secondary data came from interviews conducted in England between 2008 and 2011.  Scotland has taken a different policy direction to England on self-directed support with less emphasis on the individual budget aspect of SDS.  Interviews with the service professionals and service user stakeholders took place in one Scottish region and may not be representative of other regions.  Stakeholder interviews included only eight participants from a range of backgrounds and the views of these individuals may not be representative of a wider population.  The sample for the primary interviews did not include any parents of disabled young people although a carers’ advocacy worker was interviewed in the stakeholder phase and the views of parents were represented in the secondary data set.

This study has explored the phenomenon of informed choice in the context of SDS and has begun to develop theories on the facilitators and barriers to informed choice.  This will help to inform emerging policy and practice as SDS is implemented nationally in Scotland.  The importance of supportive family and professional networks in helping disabled young people in transition become empowered to realise informed choice points to the importance of future research on the role of social capital on this issue.  This study has highlighted the challenges of realising informed choice in rural areas and has found that while the role of micro-enterprises and the flexibility to employ family members can mitigate the lack of choice, there are issues remaining for those individuals who would prefer to choose the local authority to provide or arrange their support.

 The policy of self-directed support is likely to be fully introduced in Scotland in 2014.  There are significant challenges for local authorities, service provider agencies and others in ensuring that disabled young people and their families will have access to adequate assistance to make informed choice a reality.  This study will contribute to the knowledge base emerging on self-directed support and personalisation to guide national policy and local practice.  The findings from this study point to the need to involve disabled young people, their parents and formal carers/professionals at an early stage in choice-making, and to foster self-advocacy skills and supportive and innovative networks over a period of time.  Informed choice needs to be seen as a process over time involving informational and emotional elements, rather than a series of one-off discrete events based purely on logical reasoning.