Barriers to improved outcomes
Whole system working Stakeholders agreed that a whole system and multi-agency approach is essential to both improving outcomes and financial sustainability. The interfaces with housing and health were highlighted as being particularly important. There was also agreement that the relationship with the NHS is critical for improvement, with a widespread view that the gap between Care Act and Continuing Healthcare (CHC) eligibility (whereby an individual may be eligible for support from one source but not from the other) is leading to a greater cost impact for local authorities and for the NHS. Several colleagues reported having seen a significant ‘cost shunt’ from the NHS to the local authority in recent years. This has reportedly occurred through programmes such as Transforming Care and is exacerbated by the premium reported by some to be placed on NHS CHC cases by providers. Stakeholders engaged through this programme also raised the impact of the lack of availability of NHS specialist services to support people in the community and to enable them to live well. Secondary mental health and learning disability health services reportedly tend to be limited to shorter-term interventions, rather than supporting longer term care and support needs.
There was an appreciation of why providers would not see working with working age individuals of complex needs as an attractive commercial offer – due to the large potential reputational risk and lower profit margins. They also felt that coming to a position where local systems can achieve “a happy individual, a happy provider, and a happy local authority” felt almost impossible. I asked for a cleaner as I have trouble with physical things but they won’t give me one, they’re too rigid. It needs to be more centred around the person. You can have some things like entertainment or travel, but if you want something else they seem reluctant, especially if it doesn’t fit in with them.” Amy, 46 National enablers to support local improvement Through the engagement there was a widespread view that even though there is much that can be done at a local level to improve outcomes, there are several key national enablers which could facilitate improvement and help overcome key barriers. For example, some stakeholders questioned whether a new policy framework could be beneficial, such as by refreshing the 2001 Valuing People white paper. There was also consensus that the current means of funding support for working age and lifelong disabled adults is not fit for purpose, and that the quantum of funding available is insufficient to meet the needs of this group. Potential national enablers of improved outcomes are explored further in Section 9.
This section has sought to make the case for improving outcomes for working age and lifelong disabled adults. Through sector engagement carried out for this programme, all those engaged agreed that this group of individuals requires a greater focus and greater priority. However, they also raised several issues in the current system which they believe to be impeding the delivery of improved outcomes. These are key barriers which stakeholders engaged believe will need to be overcome by local and national government in the coming years, and which will be explored further in the second phase of this programme in 2025. Model of care Many of those engaged agreed that the delivery model for working age and lifelong disabled adults is out of date and needs redesigning. New housing solutions was a key priority identified, as well as suitable provision to support individuals with moderate levels of need. Increasingly complex needs are also driving the requirement to question approaches. Stakeholders were keen to explore how in-house provision could be used in new ways to support changing needs, for example by having more flexible, neighbourhood-level background support to enable a wider range of options for individuals when planning their support. This would be likely to improve independence as well as potentially reduce the need for some out of area placements. The role of local partners was also raised as a priority, for example taking a stronger community strengths-based approach to support and maximising the role of education partners. Nationally, the Department for Work and Pensions (DWP) was used as an example of a partner who could help support better employment outcomes for working age and lifelong disabled adults. There was a recognition that despite the progress made in models of care in recent history, the new model required for the future will inevitably be more multi-faceted.
I wish they’d involve me
more in planning my care. Everyone just talks to my support worker, and not me. My doctor, my social worker, shop staff… It makes me feel invisible.” John, 32 Housing Inappropriate and insufficient housing was highlighted repeatedly through this programme as a key issue preventing optimal outcomes being achieved for working age and lifelong disabled adults. Due to a lack of local authority housing, many authorities engaged in this programme reported having to use supported living to provide accommodation to individuals with low support needs. Some supported living placements come with a ‘minimum’ amount of support from the provider to warrant a placement (e.g. a set number of 1:1 hours). This limits these individuals’ independence, costs more to the state than local authority housing would, and further places individuals away from the same experiences as their non- disabled peers. Changing needs also require different housing solutions. For example, with more individuals with a learning disability now being cared for by relatives in their 80s and 90s, there is an increasing risk of care breakdown as carers’ health declines. Supported housing for family units could be an effective way of maintaining family relationships alongside maximising independence, were the provision available.
Commissioning and market management
Several authorities engaged said that they are grappling with feeling somewhat ‘at the mercy’ of local providers who they believe to be resistant to changing packages of support and who are seen to prioritise the more financially lucrative older adult self-funder market. There were also reports of ‘handbacks’ from providers happening more frequently, negatively affecting individuals and often increasing package costs.
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