Navigating Autism Adult Services in the UK

The transition to adulthood includes making decisions for one’s future, and there are ways to make this easier for those on the spectrum.

Families with loved ones who have undergone the transition from a residential school or college to adult social care services will know how complex the process can be. We know that families whose children will leave specialist education in the next few years may be experiencing feelings of uncertainty and apprehension.

Dimensions recently hosted a free webinar to bring these two groups together, providing insight from family consultants, support providers, and experts by experience, to equip as many families as possible with the tools to make the most of their loved one’s move from education into adult social care support services (often called “transition”). Here is what we learned…

Getting started

Each local authority is responsible for managing the transition out of school for pupils with an Education, Health & Care Plan (EHCP). While they can vary between different local authorities, provisions need to be put in place.

Families can therefore ask their council to perform an eligibility assessment for their child before they turn 18. They can outline their loved one’s needs in a fully person-centered way, allowing the local authorities to advise the different types of support available – depending on the local eligibility criteria.

Provision of support may sometimes differ from what the individual and their family would prefer. In this instance, the LA should take the person’s wishes into consideration. If, however, they fail to do so, then the person will be eligible for support from advocacy groups such as Mencap, NYAS, VoiceAbility, POhWER, and Disability Rights UK, to ensure that their voice is properly heard.

In addition, it is worth noting that many residential schools are owned by organizations that also run large adult care homes. Families should be aware of this so they can avoid being pushed into their existing support provider’s adult social care provision, which may not necessarily suit their loved one.

Help with housing

Differentiating between the various models of support is key to securing a move that is tailored to the individual’s needs. While people without direct experience sometimes view adult social care as synonymous with residential care in permanently staffed homes, many people – even those with complex health needs – can enjoy the greater independence of supported living.

Most adults with learning disabilities and/or autism prefer supported living, where they can live in their own home with as much or as little support as they need, often fairly close to where they grew up. They can choose to live alone, with friends, or with a partner, and they can choose to change their living arrangements as they go through life, even those with complex health and communication needs.

Different models of support have differing financial implications. People in supported living are usually eligible for housing benefits to cover rent costs, while the cost of residential care is usually met by Health or Social Services. There are, however, other monetary matters to consider when organizing someone’s transition to adult social care services.

Money matters

Back when most people with learning disabilities and/or autism lived in residential care on a small weekly allowance in the UK, there was a certain simplicity about financial matters. Now, though, many people are far freer to make their own choices about how they spend their money, often a combination of benefits and personal budget, and thus how they spend their life.

Upon turning 16, someone with learning disabilities and/or autism has the same right as anyone else to claim benefits such as Universal Credit and Employment & Support Allowance (ESA). The Direct Payment of a Personal Budget, which the LA will allocate on assessing a young person’s needs, is not a welfare benefit but a support needs budget.

Personal Budgets should be reviewed annually. They are available to anyone aged between 18 and 64 who qualifies for having their needs for care or support met and are paid directly to individuals to purchase their own services. Families can support with finances with the young person’s permission, as an appointee to manage benefits (having been assessed as suitable by the Department for Work & Pensions), as a court-appointed deputy to manage all financial affairs, or through Power of Attorney granted by the young person.

Family consultant: Leveraging the law

Liz found out about the Mental Capacity Act (MCA) just as her daughter started secondary school, and she used the principles of the MCA to support her daughter’s own decision-making during her transition to adult life.

The MCA is designed to empower people who may be unable to make some decisions by themselves. It recognizes that while some people may lack capacity to consent to medical treatment, for instance, they may be more than capable of making smaller decisions such as what they would like to eat. The MCA ensures that any decision made on an individual’s behalf must be in the person’s best interests.

Liz used these principles in her parenting, starting with everyday choices, so that now her daughter is regularly able to make much bigger decisions by herself. Her decisions may not always be wise (which the MCA prescribes for) and in that sense she is no different from any other young person – but, crucially, these decisions are hers.

Acting in her daughter’s best interests, moreover, is often about limiting her freedom as little as possible. Managing her daughter’s finances, for instance, does not remove her daughter’s right to spend her disposable income how she chooses. Within the parameters of the support she needs, she is free to live her life the way she wants.

Expert by experience: Owain’s own place

Owain knows a thing or two about living with more freedom, having moved into his own flat during the pandemic. Aged 18, he had virtually no belongings and needed support to tie his shoes. But now, with support from Dimensions, he has developed skills such as cooking and cleaning, and is currently planning a trip to Blackpool with friends for his 21st birthday.

Looking back on the last couple of years, Owain acknowledges that it has not always been easy, but he is immensely proud of the progress he has made. He is thriving in adult life more than he ever thought possible.

Owain’s story is a great example of what people with additional needs can achieve when supported to live in the community. Indeed, every individual will benefit from a transition to adult services – and adult life – that has been tailored to meet their specific needs.

This isn’t necessarily straightforward, and can certainly take time. But hopefully families will take something from the considerations highlighted here, and from our resources, which include a comprehensive Q&A for those going through transitions now, by those who have already done it. We hope to share this knowledge to benefit as many people as possible.