Learning Disabilities, Autism and Neurodivergence Bill: consultation analysis

Section 14: Children and Young People - Transitions to Adulthood

Introduction

The consultation set out the current legislative landscape relevant to young people transitioning to adulthood, as well as a National Transitions to Adulthood Strategy being developed. It was noted, however, that this landscape has been described as ‘cluttered’, ‘complex’ and ‘difficult to navigate’ for young people and their families, as well as professionals working to support them.

It was highlighted that transitions can involve every aspect of life, including housing, employment, social care, education, transport and relationships. As such, it was proposed that many of the overarching and sector specific proposals covered elsewhere in the consultation should also contribute to improved outcomes in this area. This included proposals related to inclusive communications, mandatory training, independent advocacy, and statutory strategies. With specific reference to data, the Scottish Government was keen to develop an approach which will:

• Enable better understanding and measure the extent to which young people with learning disabilities and neurodivergent young people are experiencing a positive and supported transition to adult life;
• Ensure the visibility of young people with learning disabilities and neurodivergent young people;
• Help inform the work that will take place under a National Transitions to Adulthood Strategy; and
• Help to inform the development of services to meet the needs of young people with learning disabilities and neurodivergent young people when transitioning to adulthood.

Main Findings

Overall, 392 respondents provided feedback at this section. Responses showed widely different interpretations of the proposals, with some agreeing and disagreeing for the same reasons - e.g. because they thought the proposal would simplify the current legislation and/or make specific provisions for better planned and supported transitions, while others felt the proposal did not tackle these issues. In many cases, where respondents indicated they agreed with the proposal, it was difficult to identify which element(s) they agreed with and why, or even if they agreed with the proposal or simply some of the background information and rationale that had been set out at this section. Indeed, many of the comments tended to focus on the current problems around transition, the confusing landscape, and the need for better processes or support, rather than linking to the specific elements of the proposal that would deliver this change.

Several respondents felt that the proposal was “vague” and unactionable, with others indicating that they did not fully understand what was being proposed at this section. Others perceived that the consultation document did not set out any proposals specific to transitions, or that what was set out suggested inaction in this area. There was a sense among a few of these respondents that the attitude conveyed was that this issue was too large and too difficult to tackle, which elicited frustration and anger, particularly among individuals:

“So, the LDAN Bill is not going to add anything here. How long will this take to resolve? This is a huge gap… at every stage my son has gone through regarding his education journey, there is less and less support and the fight gets harder and harder the older he gets, and this to me sums up unfortunately public services not knowing what to do for young people with ASN… Families are always having to fight for everything for their children it just is not right... It simply is not good enough.” (On behalf of a LDAN person)

Change Needed

Whether individuals agreed or disagreed with the proposal, they stressed the need for change in this area. This included the need for more joined up services, more partnership working and a multi-agency approach to transitions, as well as greater and more proactive support. It was argued that support was required in order to prepare for transitions to ensure they are smoother, during transitionary periods themselves, following transitions to monitor progress and ensure longer term success, and also throughout adulthood.

Many respondents suggested that, too often, support would stop at this stage, i.e. transitioning to adulthood. It was described as reaching a “cliff edge”. Respondents highlighted that a lot of support and activities could be put in place via children’s and young people’s services (e.g. via schools and paediatric health services), but this stopped once a person aged out of these services:

“But perhaps even more critical and not mentioned above is when a neurodivergent adolescent becomes an adult. The care they [received] prior to being 18 suddenly stops and very little explanation as to why is given to them. They and their carers, families and siblings are effectively left to fend for themselves. There is no "bridge" for this transition. We need one urgently.” (Neurodivergent Individual)

Indeed, a few felt that the lack of adult services were often the cause of poor transition experiences, as there was nowhere to transition into. Whilst not making the connection so explicitly, others also flagged cuts to and the lack of adult services, such as day centres which had previously provided purpose, community and care for those unable to work/live independently, as being problematic. As well as isolating the young person, this was also a source of anxiety for families who tried to find other services or activities, although in some cases it was noted that the removal of such services had left them with no alternatives.

Personal Testimony of Difficulties

Personal testimony of difficulties transitioning between children’s and adults’ services/sectors were provided by a number of respondents, including individuals who had lived experience and from parents/carers. In particular, respondents described poor experiences moving on from school, as well as in healthcare and the transition from CAMHS to adult disability or mental health services. It was noted that poor transitions, and a lack of support and positive destinations after leaving school, or the lack of a clear pathway through adulthood, can lead to significant issues. This included prolonged unemployment, a lack of purposeful activity, isolation, housing issues, and mental health problems for the individual as well as stress and anxiety for family/carers.

Some respondents also noted that the voices of young people with learning disabilities and neurodivergent young people were often not heard or taken into account when planning for transitions, with decisions being based on what is available rather than what the young person and their family wanted, or what would be in their best interests. It was stressed (often by organisations) that young people must be more involved in planning their future, and that services needed to listen to young people and their families during transition planning.

Gaps in Support

Respondents highlighted that gaps in service provision also existed due to different thresholds for children’s and adults’ services, with it being particularly difficult for those aged 16-18 as they were often between the age limits for services. This was particularly the case for some advocacy services, but was also noted as relevant for other services, such as social work.

In addition, several respondents flagged a gap in support for those who do not have learning disabilities and/or do not require full time care, but who were not fully independent. It was suggested they often still required some support, or support in particular areas, but that this was either difficult to find or did not exist.

Some respondents also suggested that provisions were inconsistent and patchy across Scotland, with some areas/services handling transitions (particularly from school) better than others.

Support Adult Transitions

Another commonly raised issue was that transitions should not be seen as something only affecting young people or as children transition to adulthood. Rather, it was stressed that support for transitions is needed throughout life, and particularly throughout adulthood, which respondents felt had not been addressed by the consultation. Various life stages and events were highlighted as transition points where adults required support and potential access to services (for example getting married, having children, housing issues, health issues, bereavement, changing jobs, retirement, and transitioning to senior years). Late diagnosis was also flagged as a key issue around supporting adults and setting up support for adults, and not just young people transitioning from children and young people’s services:

“We would argue that learning disabilities and neurodivergence are lifelong conditions and require a lifelong approach. Whilst it is important to ensure due consideration to the period of transition to adulthood we would advocate a lifelong, seamless, approach where, for example, teams work to support individuals across their lifespan, reducing and increasing that support according to needs and client preferences at different life stages.” (LDAN Support/Representative Organisation - Other Conditions)

Support for Parents/Carers

Several respondents stressed that parents/carers also need to be supported through transition periods. This was considered necessary to provide information and a structure which would allow parents/carers to better support their young person to make choices about their future and to access suitable services/their rights. However, a few also noted that parents/carers sometimes needed support to allow the transition to happen, and as they themselves transition from a parent role to that of an unpaid carer.

Key Areas for Improvement

Simplify, Clarify and De-Clutter: A number of respondents, irrespective of whether or not they agreed/disagreed with the proposals, stressed the need to simplify and clarify transition processes, legislation and strategies, and to de-clutter the current landscape. A few felt that the LDAN Bill would be a good opportunity to tackle this.

Information for Individuals and Families : Another key area for improvement was for people with learning disabilities and neurodivergent people and their families/carers to be provided with more information and signposting about transition processes and support, available adult services and how to access them, and their rights and how to ensure these rights are upheld. Similar to concerns raised elsewhere in the consultation (particularly in relation to the provision of inclusive communication), it was important for information to be proactively provided rather than individuals or families having to find this on their own:

“Transition is such a difficult stage for young adults and also very confusing and stressful for parents/carers that up to date accurate information, positive support and awareness is vital. At present this is an area where a lot of input and change to the present system is necessary.” (On behalf of a LDAN person, and Family/Friend)

Timescales and Pathways: Another area commonly flagged for improvement/ seen as necessary to provide good transitions was more time/longer timescales for transition planning. It was felt that preparations needed to start much earlier, with respondents suggesting current transition planning and consideration of options/choices begins too late. A few of those responding as family members, friends and carers suggested this needed to begin at least two years or more before the actual transition point. It was also suggested that the age limit for children’s and young people’s services and the time dedicated to the transition phase could be extended so this occurred in a more phased way. It was generally felt that young people with learning disabilities and neurodivergent young people needed education, support and transition input up to age 25 to allow them to fully reach their potential, (with ongoing input and support from adult services beyond this point if required).

A clearer and wider range of pathways were also said to be needed for young people with learning disabilities and neurodivergent young people when they leave school. This needed to be combined with ongoing support to ensure positive destinations can be maintained over the longer-term. It was suggested that these situations (including further/higher education, housing, employment, etc.) can often break down over time, but that there was currently no review or monitoring of this.

More Services to Transition Into: The creation of more adult services to provide support beyond children and young people’s services was also viewed as crucial to avoid the “cliff edge” situation discussed above (and funding was critical to deliver this). Similarly, more funding was said to be required for services to support transitions, as well as direct funding for individuals/families to allow them to access adult services, support and activities:

“Where transition planning is done effectively, it remains the case that a plan is only as good as the availability of meaningful destinations. Without addressing the availability of services and support for young people as they move to adult services, a transition plan will have limited effect. While it is right to ensure that planning starts at an appropriate time, and that processes are robust, without meaningful destinations the process will not be complete.” (LDAN Support/Representative Organisation - Autism)

Lead Professional and Peer Support: A few individuals and third sector organisations (who were focused on or advocated for young people) called for a named person, a lead professional, a co-ordinator or a key worker to support individuals and their families/carers through transitions to adulthood (and possibly beyond). Such a professional would take a lead role in managing and co-ordinating transitions, acting as liaison between the individual/family and professional services, maintaining and co-ordinating connections with and referrals into different services, ensuring timely and appropriate communication, etc. It was suggested this would be highly beneficial and remove much of the worry and stress from families trying to do everything on their own.

A few individuals also suggested that a peer support network/model and/or one stop shops would be useful to support and signpost young people with learning disabilities and neurodivergent young people through transition periods.

Eligibility for Adult Services: Some respondents highlighted the disparity in eligibility for accessing children’s versus adults’ services, particularly in relation to diagnosis. While a diagnosis is not required to access or be supported by many children’s services, it was noted that it is generally needed to access adult services/support. Some therefore stressed the need for more diagnoses to occur among children in order to allow them to access adult services later. Others, however, suggested that eligibility for adult services should be brought more in line with the children and young people’s system and be based on need, i.e. not requiring a diagnosis.

Data Specific Proposals

Some respondents (including both individuals and a range of organisation types and sectors) specifically discussed the data aspect of the proposal, with most of these respondents generally supportive of the four aims set out in the consultation document. While many of these respondents generally supported the collection of data to improve learning and understanding, and to help guide future strategy and service development in relation to transitions, several set out caveats and concerns, or were cautious or sceptical of data collection (similar to issues raised in relation to the overarching theme related to data). These caveats/concerns included:

• There being a need to gather disaggregated and intersectional data;
• A need for both quantitative and qualitative data to understand experiences;
• A need to involve those with lived experience in design/co-production of the types of data to be collected as well as data collection methods;
• Any data collection and analysis to be done in line with informed consent, data security measures and anonymity; and
• The practicalities of data collection were questioned, such as how co-morbidities would be classified and whether an official diagnosis would be needed.

Agreement with Overarching Themes on Improving Transitions

Several respondents suggested that national/local strategies in relation to transitions and better education/training and awareness for service providers would be helpful. Accessible information and increased advocacy for transitions was also sought.

While several individuals and organisations agreed that many of the overarching themes would be helpful in tackling and supporting transitions, it was felt that this issue needed greater consideration and specific coverage within the dedicated sections of the Bill to ensure this issue was properly taken into account.

Views Around More Legislation

Support for More Legislation: Some individuals and organisations felt that more robust provisions needed to be made for transitions within the LDAN Bill, and that this issue needed to be addressed specifically in legislation. It was felt that the LDAN Bill provided a good opportunity to support and “bolster” existing legislation, address some of the gaps in this area, and ensure a better and smoother system for transitions. There were also calls for transition planning to become a legally binding process, for there to be mandatory requirements and/or statutory guidance around transitions, and for individuals to have statutory rights in this respect.

A few individuals suggested that the decision to not enact the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Member’s Bill should be reviewed as this type of provision was considered highly necessary. Other respondents (including both individuals and a range of organisations) suggested the LDAN Bill should incorporate important elements of the failed Member’s Bill. While most respondents did not highlight any specific elements to be adopted, a few organisations felt this should include the use of individual support plans and/or person specific transition plans/strategies, as well as dedicated transition teams and the resources that would be required to support this

No Need for More Legislation: In contrast, other respondents (covering a range of individuals and organisations, but particularly public bodies) felt that more legislation was not necessary in this area. However, respondents largely welcomed the forthcoming National Transitions to Adulthood Strategy.

Rather than new legislation, a few organisations (including a mix of public sector, third sector, and nationally representative bodies) highlighted the ‘Principles of Good Transitions’ developed by the Scottish Transitions Forum. They wanted to see this further endorsed, widely implemented, and embedded.

Tackle the Implementation Gap

Many respondents, including those who agreed with the proposals in principle and most of those who disagreed with the proposals, felt that they did not go far enough and would not be sufficient on their own to tackle the inadequacies in the system and significantly improve transitions. Together, it was perceived that they would do nothing to tackle the significant implementation gap:

“The issues for young people with learning disabilities and neurodivergent conditions in transition to adulthood are well-known to those working in this area. As noted, the problem has been the implementation gap, with over-stretched services unable to provide what is promised in policy. [Organisation name] does not feel that this issue is addressed in this Bill.” (Mental Health Organisation)

Even those who agreed with the proposals in principle, and were supportive of not introducing more legislation in this area, stressed a desire and need for actions to address the current implementation gap in relation to transitions. Again, increased investment, funding and support from the Scottish Government were said to be needed to deliver this, as well as the development of robust accountability measures (to be delivered by the LDAN Bill) to ensure enforcement of existing legislation and to address any failures to deliver this.

A few individuals only reluctantly supported the proposals on the basis that they were “better than nothing”, but again stressed they did not go far enough and did nothing to address the implementation gap.

Sector Specific Transition Issues

Education

There were a few calls for young people to be able to continue with standard education beyond age 16-18. It was noted that young people with learning disabilities and neurodivergent young people often have different developmental timelines and that their achievements cannot always be realised in the same attainment windows as their neurotypical peers. Rather it was suggested that they should have the opportunity to pursue the standard curriculum up to the age of 25.

A more managed and supported transition from school into college and/or university was said to be required, as well as more support for young people once attending further/higher education settings, with providers being required to deliver this. This included the provision of more supported courses, and more support on mainstream courses (including in-class support) to make them more accessible.

It was also felt that more college courses were needed, both in terms of the number of places available for young people with learning disabilities and neurodivergent young people, and a wider range of courses. The lack of choice and low levels of aspiration for people with learning disabilities in particular was highlighted and considered to be an issue that should be addressed.

It was felt that both schools and colleges needed to do more to prepare young people for adult life - e.g. teach skills on building good relationships (discussed elsewhere in the consultation), neuro-affirmative boundaries, financial planning, what and how legislation applies to them, and how to achieve autonomy and control of their own lives. Further, it was suggested that educational settings should do more to support young people into positive destinations, including better preparation for further or higher education, independent living and employment - this included greater provision of work experience (also discussed elsewhere in the consultation). Awareness of, and mechanisms to support the transition to adulthood for those who disengage/refuse to attend school was also said to be needed.

Respondents stressed the need for a dedicated section on post-school education in the consultation/LDAN Bill to address inequalities experienced at college and university - the fact this was not included was seen as a “missed opportunity”. One third sector support organisation also recommended that any mandatory training requirements established for the ELC and school sectors be extended to include further and higher education - which it was noted were not currently in scope at the education based proposals (i.e. Part 3 Section 13).

Employment

It was also felt that the employment section of the consultation/LDAN Bill needed more dedicated coverage and focus on transitions if this issue was to be suitably addressed by those proposals. Other suggestions discussed in relation to employment included:

• Wider education and positive awareness raising of neurodivergence being needed among employers, avoiding the use of a deficit model of explanation;
• Training for workplace supervisors being considered as necessary;
• More organisations and employers needing to offer specific places/ employment for those with additional needs/people with learning disabilities and neurodivergent people, and employers (and education settings) needing to be reminded of their duty to consider reasonable adjustments; and
• Equitable access to employment may require further investigation.

Health

A few organisations highlighted the differences between children’s and adults’ health services. They noted the single paediatric approach to all health conditions in childhood, but that the adult system often requires the person to be seen by several different specialist and departments. This was said to be difficult for people with learning disabilities and neurodivergent people and their families to manage, and also made transitioning to adult services difficult as multiple services needed to be involved in planning. Again, it was suggested that having a lead service/professional or ‘hub’ might be helpful to try to align adult health services more with the paediatric approach.

It was also felt that more consideration and detail was needed in the consultation/ Bill for transitions in relation to both health and mental health.

Other Comments and Considerations

Only a few ‘other’ areas or issues were identified for consideration at this section, including:

• That transition support should be available to all disabled young people, not just young people with learning disabilities and neurodivergent young people;
• That the LDAN Bill should adopt a human rights based approach and be aligned with UNCRDP and UNCRC; and
• That more consideration was needed of issues affecting children, including adverse childhood experiences (ACEs) and childhood inequalities.