Learning Disabilities, Autism and Neurodivergence Bill: Consultation Analysis

Section 3: Social Care

Introduction

The consultation set out three specific proposals linked to improving delivery of social care, social work and community health services for adults with learning disabilities and neurodivergent people, these being:

• Proposal 1: Neurodivergent and Learning Disabilities Strategies - for Integration Authorities and local authorities to set out how they and organisations they commission will take into account the needs of people with learning disabilities and neurodivergent people in their workforce planning and workforce training, as well as how they are meeting requirements around inclusive communications and accessibility.
• Proposal 2: Mandatory Training for the Health and Social Care Workforce - to legislate for a training requirement for health and social care staff which focusses on both neurodivergence and learning disabilities (rather than just autism and learning disabilities).
• Proposal 3: Inclusive Communication and Accessibility - to legislate for people with learning disabilities and neurodivergent people to have better access to inclusive communications.

The consultation also stressed intentions to do more work to look at how far existing complaints systems in relation to social care meet the needs of people with learning disabilities and neurodivergent people. However, no specific proposal was set out in relation to this.

Main Findings

Overall, 437 respondents provided feedback at this section. Again, a large number indicated that they agreed with all of the proposals, mainly on the basis that they would remove barriers to access that currently exist, would protect the interests of people with learning disabilities and neurodivergent people and contribute to building a fairer and more inclusive society. Several respondents stressed that the proposals must work in parallel to ensure there is a robust and consistent approach to ensuring the needs of neurodivergent people are met.

It should be noted that a large number of respondents simply cross-referenced their answers to the overarching and other themed areas of the consultation in response to this section, i.e. those on mandatory training, inclusive communications and health and wellbeing (with some respondents noting that there was nothing ‘new’ in this section that had not ready been covered elsewhere and/or that the section did not actually cover anything of detail in relation to Social Care). As such, much of the feedback given at this question duplicated or mirrored closely the main findings already presented above, the main points being that:

• local strategies were seen as helping to facilitate consistency of high-quality provision across the country while ensuring flexibility for improving service user journeys at the local level. By involving individuals with lived experience in the design process, strategies were more likely to be more comprehensive and sensitive to the unique challenges faced by these communities;
• mandatory training was strongly supported as a means of raising awareness and skill levels but must be co-designed and co-delivered by people with lived experience, with sufficient resource put in place to support its development and delivery. It must also be meaningful and relevant to the roles of those who undertake it and should be regularly updated; and
• improvements to making communication inclusive were seen as long overdue and there was strong support for choice to be offered as standard (without the onus being on the individual to ‘request’ alternatives or support).

The main ‘additional’ feedback largely focussed on ways to further strengthen the proposals in relation to strategies, communication and training, as set out below.

Proposal 1: Strategies

Several respondents urged that accountability must be built into local strategies with clear guidelines for action that would be taken if local plans were not sufficiently implemented and/or did not result in tangible improvements. This was also seen as necessary so that their formulation does not become a tick box exercise or become vulnerable to self-evaluation:

“Without strong accountability processes in place, the needs of neurodivergent people in all sectors can be dismissed or people finding it difficult to access the support they desperately need.” (Neurodivergent Individual)

A very specific point raised by several respondents was the need for this proposal to go further and provide clear guidance and strategies in order that social care planning meets the needs of those with Down’s Syndrome.

Other respondents stressed that local strategies would also need to be flexible, practical and adaptable to ensure they were relevant for a broad range of situations and needs (including meeting the needs of those with PMLD).

A minority suggestion was that there should be separate strategies for neurodivergence and learning disability.

Proposal 2: Mandatory Training

Strong views were again put forward that training must be very specifically tailored to cover the different complexities and challenges faced by different individuals and that learning disabilities, autism and neurodivergence alone were not sufficient as ‘categories’ for training to be structured around (for example, training for health and social care staff must also include topics related to dementia and epilepsy). As with responses to earlier sections of the consultation, however, this view was not unanimous and other respondents expressed a preference for training not to be widened beyond learning disabilities and autism at this time.

Views were also repeated that mandatory training could be broadened out to include all public services and/or all pubic facing staff as well as managerial and strategic staff and that development opportunities for staff must also be embedded to support training.

Widening training to third sector providers (especially those that support local authority social care services in delivery) was also again encouraged.

Making training a measurable objective and having performance indicators linked to uptake of training was again stressed as key, as well as setting out clear plans in the Bill for how training objectives and outcomes would be monitored and evaluated.

Proposal 3: Inclusive Communication

It was suggested that the Bill could be very specific about which groups were in scope for the proposals (i.e. rather than referring to the wider neurodivergent group as a whole, be very specific about the separate needs of, for example, autistic people and those with ADHD and how their communication needs would be separately met).

More attention could also be given, it was suggested, to how information was delivered as well as the formats in which it was made available.

Calls were also made for specific provisions to be in place for those who may feel anxious or unable to ‘request’ access to alternative communications, recognising that this can be a barrier to access in its own right.

Other Comments and Considerations

The main additional comments given in relation to these proposals were around how they would be funded, with several respondents again querying if sufficient resource would be available to realise ambitions. This was coupled with equal concern regarding workforce and capacity issues across public services including health, social work, and social care services, and the availability of time for training.

As already raised elsewhere in the consultation, many respondents noted that some local authorities may lack the funds and capacity to deliver, and it was specifically highlighted here that this may be true for remote, rural and island areas, for which other unique accessibility challenges may also exist in delivering social care.

Comments were again made that there should be clear timeframes set out for implementation so that the proposals could come into effect as soon as possible.

As with earlier questions, there were calls here for data to be collected on performance in relation to meeting expectations/standards (not only in relation to training and inclusive communications, but for delivery of inclusive services per se).

A small number of respondents suggested that the Bill overall, including this section, could provide more focus on children’s social care needs as well as adults, with greater consideration of how integration of health and social care work for children:

“We refer to our previous response to the National Care Service consultation…and in particular the lack of evidence regarding children’s services, with the exception of services for looked after children. We are concerned that this consultation has replicated the approach taken in that consultation and failed to properly take account of children’s needs, views and rights.” (Children's Organisation/Service)

Similarly, several respondents felt that the needs of carers had been overlooked in the current consultation, including in proposals linked to social care.

The only other new comments raised here (by just a small number of respondents each) were that proposals must also consider the needs of neurodivergent staff and not just service users, i.e. in relation to such things as accessible training delivery and ensuring a more balanced workforce mix to help embed understanding and respond to the needs of service users.

A final observation was made that it was important to define what was meant by social care and which health and social care professionals were specifically covered by the proposals.

Complaints System

Although no specific proposal was set out, several respondents stressed that they agreed with the need for complaints processes to be straightforward and accessible to all, with many describing the current process in negative terms.

One organisation proposed a multi-stage process (based on research) in relation to complaints handling by public bodies for people with learning disabilities and neurodivergent people, including:

• Everyone should have access to an easy to access, transparent, and fair complaints system;
• Any complaints system should follow human rights-based approaches, and be co-produced with rights holders;
• Complaints handling processes should not just consider the procedural aspects of a decision, but also whether fundamental rights were protected and that there was due regard to the rights holders’ dignity throughout;
• Public bodies (and staff) should proactively and regularly inform people who use their services about how they can challenge decisions and access complaints procedures and independent oversight, and that they can do so without fear of adverse consequences;
• Public bodies (and staff) should proactively signpost people to independent advocacy and advice services, highlight the benefits independent advocates offer, as well as provide reassurance regarding their independence;
• People should always have access to independent advocacy, advice and support, including interpreters and translators, for complaints and associated meetings, if they desire;
• Public bodies should maintain regular communication during the informal stage of challenging a decision and provide support (e.g. resources) for individuals asked to discuss formal challenges;
• Sources of mental health support should be made available to those pursuing challenges;
• Formal complaints processes should be timely and quick wherever possible;
• Processes should use plain, jargon-free, English;
• All information should be readily accessible in a range of accessible formats, e.g. BSL, Easy Read, Moon, etc.;
• There should be clarity and transparency about the process and what it includes, including an indication of the general time frame to expect informal and formal complaints to take; and
• Robust, disaggregated equality and human rights data should be gathered and used to monitor and analyse complaints, measure public bodies’ accountability, and contribute towards progressive realisation of rights.

Others suggested that people with learning disabilities should have access to independent advocacy when dealing with social care provision issues or complaints as this would make the process more accessible.

More general comments included that the complaints system must allow individuals an opportunity to ‘talk’ (i.e. either face to face or via video or telephone) rather than relying on written communication.

There were several calls to ensure that any complaints process also allowed for anonymity so that individuals did not feel intimidated or anxious about complaining.

Overall, any action to strengthen complaints processes was welcomed, although making people aware of complaints processes would also be key.

Disagreement with Proposals

Again, where respondents did not agree with the proposals this was mainly due to:

• Views that local strategies could lead to inconsistencies in practice around the country with too much local autonomy, and concerns that strategies would be toothless unless accompanied by clear plans for monitoring and accountability (with a small number of respondents supporting the implementation/delivery of a national strategy over local strategies and some rejecting the principle of ‘strategies’ per se);
• Concerns that training may become too diluted if the scope was too wide and would be ineffective if its scope was too narrow; and
• Strong views that individuals should not have to ‘request’ information but that it should be provided as standard.

Many respondents detailed other broader concerns linked to social care that were not directly linked to the proposals, and these mainly included comments that:

• The social care system was difficult to access and navigate;
• There was a need for better strategies around transitions in health and social care;
• Criteria for accessing some disability related social work services were inconsistent around the country and this should be addressed;
• Issues around access to services for those without diagnoses should be considered in more detail;
• There was a need for better signposting and awareness of what social care support is currently available;
• More holistic approaches in social care and community health to support people with learning disabilities and neurodivergence people may be needed;
• Better sharing of information between social care and wider services was needed;
• Social care policy should be better integrated and joined up with other policy areas, including education; and
• Social care needed to be more inclusive to meet the needs of those in minority groups.

Broad observations were again made that there was a lack of clarity around what the LDAN Bill sought to achieve that was not (or should already be) covered by the Equality Act and/or the National Care Service Bill. A small number of others again perceived that the LDAN Bill (and individual proposals within it) did not go far enough and should have an even wider reach.