They came thick and fast from all sides, through networks, a membership survey, targeted consultation with key stakeholders, random e-mails, help-line phone calls, conference feed-back and, of course (two excellent) blog posts. Many thanks to all of you who contributed information about gaps in the evidence on self-directed support. You may be unsurprised to learn that we ended up with rather a lot! Although to start with the flurry of issues seemed very diverse, gradually some broad themes could be made out through the blizzard. Key features of the emerging evidence-gap landscape included:
How will SDS/ could SDS reflect human rights? What about the social model of disability? Will it support all strands of independent living, or is it just choice about basic living/ subsistence? Will it work? Will it lead to better outcomes?Choice and control:
will people have genuine choice and control, why people choose what they do, lots on information needs and provision, what choices SDS does/ can/ should support, how easily will it adjust to fluctuating needs or changes in circumstances (including moving into paid work).
Systems and practice:
- Finance: lack of transparency about finance and package costs, evidence that SDS is not just a cover for cuts, the mechanics of budget-pooling
- Involvement: how involved are people who use services in developing local authority policies and processes
- Assessment: assessment methods, uniformity, challenge mechanisms
- Alignment: with Adult Protection and the Criminal Justice system
- Commissioning: shifting commissioning from block contracts to individual funding
- Risk: how assessed and managed
Roles: implications for staff development and the roles of others, like Community Planning Partnerships, Reshaping Older People Partnerships and the wider community.
Equality: implications for different impairment groups, including people with mental health issues, sensory impairments and/ or complex needs, evidence of equitable treatment, particular issues and barriers for BME groups, younger or older people, LGBT, faith groups, etc.
Access: how easy is it to access SDS? What are the barriers and where in the process do they arise?
Support: what is currently being provided, what more is needed, the role of advocacy.
The challenge we then had was to pick about 3 or so gaps out of the multitude and turn them into work-streams for more in-depth exploration. There were a few that could be ruled out because others were known to be working on them already, though it still left a large number of possibilities. Nonetheless, we managed (somehow!) to identify three main work-stream topics:
1. Evidence on issues for people from BME communities and people from accession countries: which might include exploration of choice, barriers, access and uptake, ethnicity and complex needs.
2. Evidence on issues for people with mental health conditions: perhaps exploring barriers and arguments against individuals accessing SDS, risk aversion, and the particular implications for younger people. It is possible that some of findings might be relevant to people with fluctuating conditions and needs more generally.
3. Evidence of human rights implications: areas that the work-stream might look at include the implications of human rights for resource allocation systems, eligibility criteria and power-shifts. It could also explore how/ if human rights are evident in outcomes and whether they signal unmet needs.
So now we embark on the next stage of our journey of exploration. If you know of anything relevant to the work-streams, whether about issues they might consider, evidence gaps, evidence of what works or sources of evidence, please do post a comment. And if you can think of important gaps that we’ve completely missed, it would be really helpful if you could let us know about them. It would be great to develop a comprehensive map of the terrain; an overview of where further evidence is still needed, so that something can be done about it, before we all find ourselves falling down the gaps.