Transitions: advocacy for young people with learning disabilities
Written by Dr Flossie Caerwynt, edited by Dr Kat Deerfield and Dr Grace Krause
June 2026
In this evidence summary, we share the most up-to-date research about the role of advocacy in transitions from children’s to adults’ social care for young people with learning disabilities.
We explore the importance of advocacy in supporting young people to express their views and helping to uphold their rights. This includes looking at how advocacy can help young people with learning disabilities to have more control during transitions.
We also discuss different types of advocacy and highlight barriers to successful advocacy during the transition process.
Introduction
The move to adults’ social care is one of the most significant changes young people who use care will experience. But there’s not much research on how to manage the transition successfully (Jacobs et al., 2021; Kelly et al., 2022).
The complexity of involving people with high support needs means that most existing research focuses on parents. There are often concerns about power imbalances between researchers and young people, and it can be difficult to make sure that young people give informed consent to take part in research (Jacobs et al., 2021). This means that most academic studies gather the views of parents and professionals rather than young people (Jacobs et al. 2021; Casey, 2021).
In this evidence summary, we’ve tried to include research that involves young people with learning disabilities as much as possible. But it’s important to recognise that this form of research isn’t as readily available.
Adulthood means different things to different people.
Transitions for young people with learning disabilities
Successful transition processes can support young people to become more actively involved in decisions about their care. This happens at a time of growing independence in other areas of their lives (Pilnik et al., 2010).
Most of the responsibility for managing the transition is left to young people (Pearson et al., 2021). This typically means young people need to make sure they have found and arranged adequate care for themselves after they reach 18. The expectation is that young people will do this as part of taking on ‘adult’ levels of independence. But for young people with learning disabilities, reaching adulthood doesn’t always mean being ready for (or wanting) independence (Pearson et al., 2021). Other ideas of what adulthood can look like are not always recognised in social care (Pilnik et al., 2010).
Young people with learning disabilities face many challenges during the transition to adult social care, including (Clarke et al., 2011; Casey, 2021):
- poor coordination between services
- a lack of accessible information about the transition
- not enough support during and after the transition
- a failure by services to listen to or involve young people directly.
Another common problem young people with learning disabilities face is a lack of appropriate services available when they turn 18. This is sometimes caused by limited service capacity, and it’s worsened by fewer respite care options (Šiška et al., 2024, Jacobs et al., 2020). Eighteen is also the cut-off age for many youth services in the UK, which don’t always have direct adult equivalents. Families report that this creates a culture of exclusion for young people with learning disabilities whose support needs have not changed (Šiška et al., 2024).
Casey (2021) interviewed parents and professionals caring for autistic young people with high support needs in Scotland. Her intention was to learn about their negative experiences of the transition process. Her research shows that this impacts on the well-being of young people and their families. For example, they can feel as though they don’t have any control over the transition (Casey, 2021). According to Casey’s research, when transitions did go well, their success was attributed to luck, parental advocacy, or help from a supportive social care worker. This highlights advocacy as one of the key elements in positive transition experiences.
Exclusion from decision-making
Social care policies reinforce the importance of involving people who access care and support in service planning and delivery. But despite this, research shows that important decisions are often made without the presence or input of the person accessing care (Jacobs et al., 2018; Jacobs et al., 2021; Pearson et al., 2025). Medforth and Boyle’s review of transition research shows that young people with high support needs are particularly vulnerable to being left out of decision-making (Medforth and Boyle, 2023). You can find out more in our evidence summary on Supporting people to make decisions about their care.
Advocacy helps to prevent exclusion from decision-making.
For a successful transition, young people need to be able to make decisions about their care. Advocacy can help them take part in decision-making and support everyone involved in the transition to work together. This includes being open about things like planning, budgets, and services (Jacobs et al., 2021).
However, a major barrier to participation in decision-making is disagreement as to what counts as having a choice about your care. In the context of social care, the term ‘choice’ can mean three different things (Harris, 2003):
- the process of deciding on a course of action
- an action which expresses a decision
- a set of available options.
Jacobs et al. (2020) have done extensive research into transitions to adulthood for young people with learning disabilities in Scotland. They primarily interviewed parents and professionals, as well as observing the young people directly. Parents mainly spoke about choice in terms of the first definition, as the ability to make an informed decision about the best possible course of action. Local authority managers, on the other hand, spoke about ‘choice’ in terms of the third definition. Their attitude was that more than one choice meant people could take part in decision-making, even if some of the available options were inappropriate (from the parents’ point of view). As a result, many parents reported feeling that they weren’t actually involved in decision-making, while professionals argued that they were (Jacobs et al., 2020).
The role of advocacy in transitions
Advocacy services help to make sure that young people’s views are listened to. For example, helping young people share their point of view in ways that can be understood by professionals (Pona and Hounsell, 2012). Advocacy services can support young people and/or their families to have more control over their transitions. They also help young people to take part in planning their care (Gilmartin and Slevin, 2009; Casey, 2021).
Transition research shows that advocacy is essential to making sure young people’s legal rights are upheld. It’s especially important for young people who can’t directly take part in the current decision-making processes. This may be due, for example, to communication differences, other disabilities that the current process does not adequately adjust for, or concerns about capacity (Medforth and Boyle, 2023; Mitchell, 2015; Jacobs et al., 2021). Advocacy support can help to overcome these barriers and amplify disabled young people’s voices (Jacobs et al., 2021).
Participating in advocacy can have many benefits for young people.
Types of advocacy
There are several types of advocacy. They aren’t mutually exclusive, and people may use more than one type of advocacy. There are four main types of advocacy that are relevant for young people with learning disabilities in their transition from children’s to adults’ social care.
- Independent advocacy services: these are staffed by professionals or volunteers who have been hired by a local authority or NHS trust to act as advocates (Morgan, 2011).
- Advocacy by family or friends: this is when a relative or other close contact advocate on the young person’s behalf. The most common example is when parents advocate for their children (Jacobs, 2020).
- Advocacy by social care or social work professionals: in some cases, people working in social care may act as unofficial advocates. It can be difficult to balance advocacy and professional duties in these cases (Dalrymple, 2003).
- Self-advocacy: this is when young people have support to advocate for themselves, usually by taking part in a self-advocacy group. These groups can be independent or part of existing services (Morgan, 2011; McCarthy and McTaggart, 2025).
With the exception of self-advocacy, all types of advocacy can be either instructed or non-instructed (Morgan, 2011):
Instructed advocacy is when an individual has the capacity to say what should be advocated for. In theory, advocates would then follow these instructions exactly without any of their own input, but in practice the level of input varies.
Non-instructed advocacy is when an advocate acts on behalf of someone who can’t express their wishes, or who is deemed to lack capacity. In these cases, parents or carers may give instruction to the advocate, or the advocate may simply make sure the young person’s legal rights are being upheld. Non-instructed advocacy is very common in transitions involving young people with learning disabilities.
Advocacy in legislation
The right of young people under the age of 18 to be involved in planning their care is protected by Article 12 of the United Nations Convention on the Rights of the Child (UNCRC). Wales made the UNCRC part of its domestic law in 2011 in the form of the Rights of Children and Young Persons (Wales) Measure 2011. The Measure clarifies that Welsh Government must have ‘due regard’ for the UNCRC in all its policies.
In addition to this, the right of people with learning disabilities to take part in decision-making is protected by the United Nations Convention on the Rights of Persons with Disabilities. This includes a requirement to ‘…provide access by persons with disabilities to the support they may require in exercising their legal capacity’ (United Nations 2006; Bigby et al., 2022a).
The right to participation in decision-making is a central part of the Social Services and Well-being Act (Wales) 2014. The Act states that young people must be allowed to voice their opinions, and decision-makers must take these opinions seriously (Davies et al., 2019). Making sure that young people can voice their opinions includes providing access to an advocate when needed. Advocacy is another of the core underpinning principles of the Act. Part 10 (Advocacy) of the Act’s Code of Practice says that:
‘Local authorities must arrange for the provision of an IPA [independent professional advocate] when a person can only overcome the barrier(s) to participate fully in the assessment, care and support planning, review and safeguarding processes with help from an appropriate individual, but there is no appropriate individual available’ (Welsh Government, 2014, emphasis in original).
The Code goes on to say that an ‘appropriate individual’ is defined as someone who isn’t (Welsh Government, 2014):
someone the individual does not want to support them
someone who is unlikely to be able to, or available to, adequately support the individual's involvement
someone implicated in an enquiry into abuse or neglect or whose actions have influenced a local authority decision to consider adult protection and support order actions or protection activity in respect of a child.
In their evaluation of the Act, Llewellyn et al. (2021) describe how the advocacy requirements have worked well. They have led to an increased use of advocacy services and greater awareness of advocacy’s importance. However, Llewellyn et al. point out that there are still many places in Wales which do not have enough advocacy services for the population size (Llewellyn et al., 2021).
Parents are important advocates during the transition to adult care.
Parental advocacy
Parents are the most common advocates for young people with learning disabilities. Most are also their child’s primary carer (Jacobs, 2020; Kruithof et al., 2020). As well as wanting to act in their child’s best interests, parents have significant knowledge about their child and their support needs. They usually have the best understanding of their child’s way of communicating. This means they are well placed to advocate on their child’s behalf (Casey, 2021). It’s also easier for parents to push back against structural barriers than it is for social care staff or social workers (Jacobs et al., 2020). Parents tend to use a combination of instructed and non-instructed advocacy.
Most participants in Jacobs et al.’s (2021) research believed that it was parental advocacy that led to positive outcomes. Some used the phrase ‘those who shout the loudest’ to describe family advocates who were able to amplify their voices to achieve results on behalf of the young person. This suggests that not all families are able or willing to advocate, or may not be able do so successfully (Jacobs et al., 2021). Because parents are such important advocates for young people with learning disabilities, young people who don’t have parental advocates are at a disadvantage (Jacobs et al., 2020). But there’s a gap in the research about the experiences of young people who don’t have parental advocates (Jacobs, 2020). In one of the few existing studies, Lee et al. (2022) looked at the experience of young people with high support needs transitioning to adult care in the United States. They showed that better services were available to those with actively advocating parents in comparison with other young people (Lee et al., 2022). You can find out more about how parents experience this transition process in our evidence summary on transitions and perspectives of young people and their families.
Advocacy and knowledge
For participation in decision-making to be meaningful, young people need to know and understand the options available to them. And they must be able to influence decisions about their care. However, young people with learning disabilities, or their advocates, might be invited to take part in decision-making but find themselves unable to do so in a meaningful way. This might be because they don’t have access to information explaining their choices in a way that they can understand. Or they might not have enough support to communicate their preferences (Harris, 2003). Without the right preparation and support, planning meetings can be overwhelming for young people and can put them off future participation (Chandroo et al., 2018).
Kruithof et al. (2020) carried out a review of research into what parents of children with learning disabilities know about their child’s support needs. This research shows that parental knowledge is essential to secure continuity of care for children. But social care professionals are more likely to listen to other professionals than to parents. This means that parents face challenges in communicating their expertise in a way that will be listened to (Kruithof et al., 2020).
Access to knowledge is important for successful advocacy.
Professional advocates know how to make an impact on the decision-making process. But this can be a problem for parents and self-advocates who don’t have enough support. In order to advocate for themselves, or to tell their advocates what they want, young people need to be able to access information about the services available to them (Smyth and Bell, 2006).
Some of the parents involved in Casey’s study said that trying to be strong advocates could lead them to be labelled as ‘difficult’ by professionals (Casey, 2021). However, when they have access to knowledge about services, parents who aren’t trained as advocates can take part in advocacy (Li et al., 2024). Their knowledge about their child’s needs is then backed by knowledge about available services. Without this information, it’s difficult for parents to know what they should be advocating for (Casey, 2021). Professionals reported that when parents advocated for their child without sufficient knowledge it was likely to be ineffective and cause more disruption than progress (Casey, 2021).
Advocacy and communication
Advocacy services need to be able to adapt to different ways of communicating. This means that advocates need special training to give proper support to young people with learning disabilities during their move to adult care (Jacobs et al., 2018). It can be helpful for all professionals involved in transitions to be trained in different communication methods. Specialist advocacy services should also be available to support young people with severe or profound disabilities to be heard (Casey, 2021).
Strong relationships are the foundation of successful advocacy. It can be difficult for people working in social care to spend time getting to know young people with learning disabilities and their methods of communication. Issues like retention and recruitment affect staff turnover rates, which can also affect consistency of care. This is another reason why most advocacy for young people with learning disabilities is done by parents, since they usually spend lots of time with their children (Kruithof et al., 2020; Jacobs, 2020).
For advocacy to be successful, advocates need to have known the young person for a significant amount of time. Preferably, they should have strong relationships with the young person’s family, friends, and professionals involved in their care. This is essential if advocacy is to respond to each young person’s communication style (Casey, 2021; Knight and Oliver, 2007). More information on the importance of relationships during the move to adult care can be found in our evidence summary on transitions and perspectives of young people and their families.
Non-instructed advocacy always runs the risk of not fully capturing or misunderstanding a young person’s wishes. Parents who advocate for their children very rarely express concerns that they may be misinterpreting their wishes (Jacobs, 2020). But research shows that this does sometimes happen (Kruithof et al., 2020). There’s a very real chance that an advocate of any type may not accurately reflect the views of the person they’re advocating for. When people think they’re interpreting a young person’s communication, they may in fact be projecting their own views about what that person should want (Winstanley, 2010). Research shows that parental advocacy is often shaped by their vision of what their child’s life should look like. They may unconsciously assume that this is also what their child wants, even if their child has never communicated this (Bigby et al., 2022a).
There can also be confusion about what forms of communication count when taking part in transition planning. Most of the people involved in Jacobs’ (2020) research said that young people with learning disabilities weren’t involved in planning their transitions. But she observed that young people used their behaviour to communicate their feelings, such as how they felt about their environment or activities they took part in. In this way, they were contributing their opinions to the decision-making process. Jacobs argues that parents and professionals seemed to believe that only formal communication (speaking, writing, or signing) counted as taking part in decision-making. Because of this, they didn’t always recognise that young people were expressing their preferences and choices in a different way (such as eye pointing, facial expressions, or gestures; Jacobs, 2020; Sense, 2023). Bigby et al. (2022b) found similar things in their research into how parents can support their children with learning disabilities to make decisions. This is why it’s so important to have an advocacy service which is tailored to supporting young people in their preferred way.
People require advocacy services which are tailored to their needs.
Barriers to advocacy success
Advocacy can only be successful when the services involved are suitably prepared and willing to take part. There isn’t much point in taking part in advocacy that has no influence on the transition process. At present, many of the advocacy and self-advocacy services in the UK are only able to have a minimal impact on practice because of deeper issues with funding and service availability (McCarthy and McTaggart, 2025; Jacobs et al., 2020).
These aren’t the only things stopping advocacy from being successful. Harris points out that even when people know they can influence, they may be reluctant to do so if they are afraid of negative consequences (Harris, 2003). Barnes has researched the differences between children’s rights workers (who advocate on young people’s behalf) and social workers. She interviewed both types of professionals and young people with experiences of working with them. Young people and rights workers said they were sometimes reluctant to insist rights were upheld, or raise concerns, because they were worried about it negatively affecting care. For example, they may worry that young people could be forced to switch care providers if staff reacted negatively to an issue being raised (Barnes, 2012). Because of this, some rights workers said they did make judgements about which of the young people’s requests to advocate for, and to what extent (Barnes, 2012). There is also evidence of parents making similar judgements, even when their children have made their preferences clear (Casey et al., 2023).
Conclusion
This evidence summary outlines current research on how advocacy can support young people’s move to adult care. It focuses on advocacy for young people with learning disabilities, who are often excluded from decision-making processes. The research says that advocacy is essential to making sure young people’s legal right to take part in decision-making is upheld. It shows that it’s important for advocacy to be tailored to individual needs and ways of communicating. And it demonstrates that, for advocacy to work well, advocates must be well-informed about the services available, as well as the planning process.
Additional reading
Here is a list of the five most relevant resources to advocacy for young people with learning disabilities that are either open access or freely available on the NHS Wales e-Library.
- Casey, H., Desmond, D. and Coffey, L. (2023) ‘Irish mothers’ experiences of providing support in decision-making to adults with intellectual disabilities: A qualitative study’, British Journal of Learning Disabilities, 52, pp. 110-120, doi:10.1111/bld.12553.
- Jacobs, P., Macmahon, K. and Quayle, E. (2020) ‘Who decides? – transitions from school to adult services for and with young people with severe intellectual disabilities’, Disability and Society, 35(7), pp. 1058-1084, doi:10.1080/09687599.2019.1669435, available at https://www.research.ed.ac.uk/en/publications/who-decides-transitions-from-school-to-adult-services-for-and-wit/ (accessed: 8 May 2026).
- Jacobs, P., Quayle, E., Wilkinson, H. and MacMahon, K. (2021) ‘Relationships matter! – Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities’, British Journal of Learning Disabilities, 49, pp. 329-340, doi:10.1111/bld.12380.
- Kruithof, K., Willems, D., van Etten-Jamaludin, F. and Olsman, E. (2020) ‘Parents’ knowledge of their child with profound intellectual and multiple disabilities: An interpretive synthesis’, Journal of Applied Research in Intellectual Disabilities, 33, pp. 1141-1150, doi:10.1111/jar.12740.
- Morgan, G. (2011) ‘Independent advocacy, neuro-disability and spirituality? A history of advocacy with a case study from the Independent Mental Capacity Advocate (IMCA) service’, Social Care and Neurodisability, 2(4), pp, 208-217, doi:10.1108/20420911111188461.
References -
Barnes, V. (2012) ‘Social Work and Advocacy with Young People: Rights and Care in Practice’, British Journal of Social Work, 42, pp. 1275-1292, doi:10.1093/bjsw/bcr142.
Bigby, C., Douglas, J., Smith, E., Carney, T., Then, S. and Wiesel, I. (2022a) ‘Parental strategies that support adults with intellectual disabilities to explore decision preferences, constraints and consequences’, Journal of Intellectual & Development Disability, 47(2), pp. 165-176, doi:10.3109/13668250.2021.1954481.
Bigby, C., Douglas, J., Smith, E., Carney, T., Then, S. and Wiesel, I. (2022b) ‘“I used to call him a non-decision-maker – I never do that anymore”: parental reflections about training to support decision-making of their adult offspring with intellectual disabilities’, Disability and Rehabilitation, 44(21), pp. 6356-6364, doi:10.1080/09638288.2021.1964623.
Casey, B.R. (2021) Transition of autistic-school leavers with complex needs to residential adult services: parent and school professional views, and the implications of those views for transition policy and practice, PhD Thesis, University of Stirling.
Casey, H., Desmond, D. and Coffey, L. (2023) ‘Irish mothers’ experiences of providing support in decision-making to adults with intellectual disabilities: A qualitative study’, British Journal of Learning Disabilities, 52, pp. 110-120, doi:10.1111/bld.12553.
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Kruithof, K., Willems, D., van Etten-Jamaludin, F. and Olsman, E. (2020) ‘Parents’ knowledge of their child with profound intellectual and multiple disabilities: An interpretive synthesis’, Journal of Applied Research in Intellectual Disabilities, 33, pp. 1141-1150, doi:10.1111/jar.12740.
Lee, C., Burke, M.M., DaWalt, L.S., Li, C. and Taylor, J.L. (2022) ‘The role of parental advocacy in addressing service disparities for transition-aged youth on the autism spectrum’, Autism, 26(4), pp. 1001-1006, doi:10.1177/13623613211057660.
Li, C., Cheung, W.C., Burke, M.M., Taylor, J.L. and DaWalt, S. (2024) ‘Examining the associations among knowledge, empowerment, and advocacy among parents of transition-aged youth with autism’, Autism, 28(8), pp. 2080-2089, doi:10.1177/13623613231221126.
Llewellyn, M., Verity, F., Wallace, S. and Tetlow, S. (2021) Evaluation of the Implementation of the Social Services and Well-being (Wales) Act: Process Evaluation – Report, Cardiff, Welsh Government, GSR report number 2/2021, available at https://www.gov.wales/evaluation-social-services-and-well-being-wales-act-2014-process-evaluation (accessed: 16 June 2026).
McCarthy, J. and McTaggart, V. (2025) ‘Fostering self-advocacy development in service-based self-advocacy groups’, Journal of Intellectual & Developmental Disability, doi:10.3109/13668250.2025.2474199.
Medforth, N. and Boyle, C. (2023) ‘Challenges, Complexity, and Developments in Transition Services for Young People with Disabilities, Mental Health, and Long-Term Conditions: An Integrative Review’, Comprehensive Child and Adolescent Nursing, 46(3), pp. 180-200, doi:10.1080/24694193.2023.2245473.
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