This article is featured in our March edition of In Focus: Preparing for adulthood. The issue explores every facet of the transition process, from social care and housing to education, employment and healthcare.
Turning 18 is typically an exciting time for young people. In the UK, you are legally recognised as an adult, with newfound control and autonomy over your life. You have the right to vote, get married without parental permission and open a bank account in your own name. However, for people with additional needs and their families, the lead up to adulthood can be daunting and frightening.
At the age of 18, young people receiving support from children’s services ‘transition’ to adult services. However, there is no automatic transfer, and families report that the transitioning process is complicated, difficult to navigate, and there is a significant lack of support from services.1
This is highlighted by a survey undertaken as part of the Transitions Project in 2020. It found that, overall, the experience of transitioning from children’s to adult’s services for families of disabled children is “predominantly poor.”1
In total, 85% of respondents said services were not able or only partly able to meet the desired outcomes for the young person, with many parents reporting that they often had to do things for themselves and fight their own battles, rather than support being provided when needed.1
“I think we’ve made the whole system quite complicated,” says Julie Pointer, Programme Lead for Children and Young People at the National Development Team for Inclusion (NDTi). “We have a wide range of referral points and different services end at different ages. We’ve also got people working in silos, which can make the process tricky to navigate.
“If you’re a parent carer who lives in a local area which doesn’t provide good information and support, which doesn’t strategically join up children’s and adults’ services, and which doesn’t have good ambitions for disabled children and young people, then you can see why it’s such a daunting experience.”
However, with the right support and planning in place, Julie says transitioning to adult services can provide young people with an opportunity to lead a more independent life.
When a young person with additional needs reaches their 18th birthday, they will start to receive support from adult services instead of children’s services. This change of support is referred to as ‘transitioning’, as it tends to happen slowly over a few years.
Julie says ‘transitioning to adult services’ is sometimes referred to as ‘preparing for adulthood’. “The term ‘transition’ can be confusing,” she said. “Children transition all the time, for example, from early years to primary school and from primary to secondary.”
Julie says preparing for adulthood can be stripped down to four simple life outcomes: independent living, good health, employment and participation in the community. This requires a multidisciplinary approach to care from an early stage, with a focus on enabling the young person to achieve their goals and aspirations.
“I feel really strongly that services should be there to support people to live a good life – it’s not about the service, but about what they can offer people,” she said. “It is vital that everyone is on the same page and thinking about the future and what needs to happen.”
Since there is no ‘automatic’ transfer to adult services, families need to start planning for adulthood long before their child comes of age.
“Early planning is key, and often, we’re not planning early enough,” Julie says. “It says very clearly in the legislation that we should prepare for adulthood from the earliest years.”
“Families, early years providers and practitioners all have a role to play here. They should be thinking ahead and supporting the child to be as independent as they can be from a young age and moving forward.”
However, planning should start explicitly from the age of 14. At this point, anyone with an Education, Health and Care Plan (EHCP) will be due an annual review. This review provides a good opportunity for parents and/or carers to speak with professionals about the child’s future.
The young person, together with their family/carer and the relevant professional(s), can discuss future support needs and how they can achieve the future they hope for.
“In year nine, we need to start properly asking questions about those four key life outcomes,” Julie says. “If you’re not doing this explicitly, it won’t happen.”
During the assessment, families and professionals should focus their attention on the young person’s capabilities in order to paint a positive future outlook.
“Families of young people with additional needs are often battling against quite a lot of negativity,” Julie says. “They are often asked to paint their worst day in order to maximise the support they receive, but this means we often focus on what the child can’t do, as opposed to what they can do. If you’re not given positive messages early on, it’s quite difficult to push against that.”
The purpose of a transition assessment is to ensure that there are no gaps in services when the child or young person becomes an adult. The assessment will consider the individual’s current needs for care and support and whether the person is likely to need further care and support after the age of 18.
If the person is deemed to have support needs, the assessor will need to consider what those needs are and how services can help the person to achieve their goals and ambitions. Local authorities are obligated to conduct a transition assessment if a young person is likely to have care and support needs after the age of 18. If a transition assessment is deemed to be of ‘significant benefit’ to the person (and consent is met), then the assessment can and should be carried out before their 18th birthday.
Everyone, including young people and carers, has the right to a needs assessment. Where eligible needs are identified, there is then a legal duty to produce a care and support plan for those over the age of 18.
It is important to note that some young people who do not currently receive support from children’s services will have care and support needs as adults.
Julie says the number of children with EHCPs is just ‘the tip of the iceberg’, and there could be thousands more children who are entitled to adult social care support. While local authorities are encouraged to consider ways of identifying young people who are not receiving children’s services but are likely to have care and support needs as adults, this does not always happen.
A needs assessment provides information on the support needs of the young person. It should provide detailed advice on how the person’s needs can best be met and/or how to reduce their needs i.e. by staying healthy and well.
Assessments can be carried out by a wide variety of people, including a social worker, a learning disability nurse, an occupational therapist or a family support worker, depending on what is available in your local area.
Some local authorities will have dedicated transition teams, which enable a better relationship across children’s and adults’ services. If a transition team is in place, there may be a link worker attached to the child’s school who can carry out the assessment. However, this varies widely across local areas. Julie says it is vital for there to be a period of crossover as the young person approaches their 18th birthday.
“We always talk about the passing of the baton, but it should always be the case that, for a little while, two people are holding on before one lets go. We don’t want families to start completely afresh; we should be using that information from the children’s world to influence and support their adult life,” she said.
After the person’s 18th birthday, a financial assessment officer from your local council will be in touch to calculate how much they will contribute towards care costs. A financial assessment is free, and any funding will be calculated based on a variety of factors such as earnings, benefits, savings and assets.
Adult social care is one of the key aspects to consider as a young person approaches adulthood. This includes where the person is going to live, what kind of support they will need and how they will be supported to continue to do the things they enjoy.
Julie says the first port of call is to look at the ‘local offer’ to see what kinds of support packages are available in your area. Every council must publish a local offer which details what types of education, health and care provision are available for children and young people with special educational needs in their local area.
Unfortunately, research by Natspec reveals that local offers are often limited in support options. In total, two thirds of parent carers who responded to Natspec’s survey said the overall quality of the information, advice and guidance (IAG) that they or their young person received was poor. They were critical of the timeliness, availability, sufficiency and quality of the IAG received, and felt that they and their young people had not been fully involved in decision-making.2
This means parents and carers may have to do their own research in order to build a comprehensive vision of what support is available in their local area and beyond. Schools and parent/carer networks can play a vital role in providing information, and families can also complain to the Local Government and Social Care Ombudsman if their council’s Local Offer page is poor and requires improvement.
If families are struggling to visualise the possibilities for their child, there are various tools that can be used to aid them with this process. For example, ‘My Perfect Week’ allows families to start thinking about how the young person likes spending their time and who with.
“This opens up a discussion around the various options and possibilities,” Julie says. “If we know what a good day and a bad day looks like, we can create more good days and less bad days based on this information.”
“Within this, it’s important to think about employment, volunteering, or something young people can do to make them feel a part of the wider community,” she added.
Julie’s top tips for transition planning1. Simplify: Preparing for adulthood can be stripped down to four simple life outcomes: employment; friends, relationships and community; independent living; and good health. Think about what makes the young person happy and how they want to spend their time. 2. Get familiar with the legislation: Take the time to read through the relevant legislation, such as the Care Act, the Children Act and the SEND Code of Practice. It is also important to read up on mental capacity, deputyship and benefits, so you can advocate for your own rights. 3. A positive mindset: Professionals working with young people with additional needs should focus on what the person can do as opposed to what they cannot do. This will help to shift the focus to what is important to the individual and improve overall quality of life and wellbeing. 4. Write it down: Parents intuitively know how to support their children well, but this is not always clear to new teams working with the individual. For this reason, it is always a good idea to write down everything you know about your child on a piece of paper – even down to the little things such as what certain noises mean. This type of information is so valuable, and if we don’t capture it, then new people providing support can miss vital opportunities to improve their care. |
There are many different types of social care support to consider, including staying at home, supported living arrangements and residential care.
Domiciliary care, also known as in-home care, provides individuals with the support they need to live independently in their own homes. This can be beneficial for families who want to remain in the same dwelling and for those who live in or rent their own property.
Carers can offer support with day-to-day tasks such as meal preparation, managing medication, and driving the person to social appointments. The level of support can be tailored to meet the needs of the individual, whether that be full-time or part-time care.
If families are able to provide most of the support themselves, they can seek additional support from respite services. These services give families short breaks from providing care and offer the person with the opportunity for an altered daily routine. This can also help the person to prepare to live independently.
While supported living arrangements can be delivered within the family home (in a similar way to domiciliary care), these services are typically offered to those who live in their own property that they either rent or own. Again, these services have a broad range of care options, from 24/7 support to just one visit per day.
People who have higher care needs will typically need more support than individuals who are largely self-sufficient. In these circumstances, Julie says it’s important to consider separating support from tenancy.
“This way, even if your support breaks down, you still have a home. If you live in accommodation provided by a support provider and the support breaks down, you could lose your home, too,” she said.
Residential care settings provide both accommodation and support with care needs. There is a huge variety in these types of settings, but in most cases, the person will have their own bedroom (and often an ensuite) with shared living spaces such as communal living rooms, dining rooms and kitchens.
Residential settings are home to variable numbers of people, with some offering singular occupancy while others could house 10 or more people. They are typically better suited to people with more complex needs who are likely to need a higher level of support.
Good care providers will focus on the needs of the individual and how they will gel with others living in the care setting. Being close to home and sharing similar interests to others in the care setting are both important things to consider.
Some families prefer this option as rent, utilities, food and transport are all included in the fee to the local authority or Clinical Commissioning Group (CCG). These types of care setting are also all registered with the Care Quality Commission (CQC), which makes it easier to assess the quality of care provided.
However, it is generally agreed that supported living arrangements provide people with the most independence and choice over how they spend their time.
When it comes to deciding what is best for the individual, Julie says early planning and listening to the wishes and aspirations of the young person are key. Young people must be asked how they want to spend their time and who with in order to ensure the best possible living arrangement.
“If we don’t plan early on, we end up trying to shoehorn people into things rather than thinking about what they want,” Julie said.
Julie said it is also helpful to speak to other parents and carers who support adults with additional needs about their experiences. Support groups can be a great way of facilitating these relationships, allowing carers to connect with others who are going through or have been through the transitioning process.
Characteristics of good transition planning (LeDeR Programme)
Source: LeDeR Programme: Transition between children’s and adult services |
Sometimes, a support package that looks good on paper doesn’t end up working well for the individual. Under these circumstances, Julie says the first thing to do is to ask for a review.
“If something isn’t working properly, everyone involved in the person’s care needs to be bought together to discuss exactly what’s going wrong,” she said. “The chances are, if you as a parent feel as though something isn’t right, others will feel the same way too.”
If your family member is living in a residential setting, you can submit a complaint to the CQC and it will be investigated. If the person is living in the community, you can submit a complaint to your local authority who will have it escalated.
If the individual feels as though their voice is not being heard, they can get in touch with their local authority who can provide an advocate. Advocates are independent and not part of the person’s family or friendship network, and they can help the person to access information and provide support during meetings and reviews.
Family members and carers can also seek additional support from carer support groups if they would like some independent advice from an external organisation. Julie says if something doesn’t feel right, trust your gut.
“If you get a feeling your son or daughter isn’t being treated properly, don’t sit on it – share it will the people around you who can help you unpick it,” she said.
Preparing for adulthood can seem like a daunting process for families and carers, but ensuring the person’s needs are met is far easier when you have good understanding of how the person wants to spend their time, who they want to spend it with, and what their long-term goals and ambitions are. Choosing the right level of support can be difficult, particularly for busy families who are time poor.
“Many local authorities have some really good local offers, but they’re just not getting through to families,” Julie said. “Lots of families are just trying to get through the week, so thinking beyond the present day and having the time to research and navigate the next steps is really challenging.”
“However, every local authority has a support, advice and information service for families with children aged 25 and under, so this can be a good place to start,” Julie adds.
Ultimately, planning for adulthood is all about thinking holistically. When you’re thinking about social care services, it’s important to consider not only the living arrangement, but also whether the person will be supported to pursue their hobbies and interests, gain employment
if their wish to, and lead a happy, fulfilled and independent life. As Julie concludes: “You don’t transition to a service, you transition to a life, and the service should just be there to support you with that transition.”
