You’ve spent three decades working on disability-related projects in the UK, across Europe, and globally. What first inspired your commitment to this field?
Well, I started at the University of St Andrews in Scotland, studying French and Psychology, as I was going to graduate in 1992 when the European Market would open up, and there would be all these jobs across Europe if you had a language other than English. I planned to be a personnel manager or occupational psychologist. But gradually I became more and more interested in psychology and particularly in understanding animal and human behaviour. One of my final undergraduate assignments was a literature review focused on the new theories and ideas around autism, in particular related to imitation and theory of mind. This started my journey. I started my Medical Research Council-funded PhD focusing on understanding concepts such as imitation and theory of mind in both human and non-human primates. However, eventually, in order to make it possible to achieve in three years, I had to make a decision: do I focus on the chimps or the children? Having eventually made the decision, I finished my PhD and in 1995 started to work as a researcher at the Tizard Centre at the University of Kent. I had the privilege to work with Prof. Glynis Murphy on the follow-up of the Camberwell Cohort – this cohort was first studied in the 1980s by Lorna Wing and Judy Gould, and it gave us what became known as the Triad of Impairments in autism. I got to visit almost 100 people with Intellectual disabilities and/or autism as adults and began to realise that life for this group was marked by institutional practices, limited participation and low expectations. By the time, I was invited to apply for a job as a lecturer at the Tizard Centre and started to teach on Service Issues in intellectual and developmental disabilities, working with the late Professor Jim Mansell, I was hooked!
What does the latest research tell us about the needs and situation of people with disabilities?
Apart from an increase in age-related health needs, due to people with disabilities living longer than they used to (as in the general population) and increasing recognition of autism and other neurodiverse populations, the needs of people with disabilities have not changed over time. However, people with disabilities are, across the world, over-represented in those below the poverty line, those who are unemployed or under-employed, those who are homeless and those who are institutionalised. Although there have been changes in policy, especially in countries that have received EU structural funds, there has been little change over time in the overall living situation of people with disabilities. Data on other indicators of participation, inclusion, choice and the general realisation of the UN CRPD are very limited in almost every country. In 2019, my colleague Jan Šiška and I undertook a review of the living situation of people with disabilities, mental health conditions, the homeless, children in general and unaccompanied migrant children in particular across 27 European countries[1]. We estimated the number of people with disabilities and mental ill-health living in residential care, including those in large (over 30 places) residential settings. Based on publicly available information (albeit limited in many countries), we estimated that just under 1.5 million children and adults were still living in residential care, and the majority of those were large, sometimes still very large, residential institutions. Even small residential services (6 or fewer people) were in the minority in many countries. Although personal assistance was available at least in some form, usually for adults with disabilities, in more than half the countries, there was little information about how many people received it. When compared to the DECLOC[2] study published in 2007, there had been little change overall, although these average figures hide some variability between countries and across different disability groups. In 2025, we were asked by the European Parliament to conduct an updated review focused on independent living for persons with a disability[3] . As part of this report, it identified that the number of children in residential care of any size had decreased in 11 countries compared to 9 where it had increased. For adults, there was an increase in 6 states compared to a decrease in 4 states.
How do the experiences of people with intellectual and developmental disabilities differ from those of people with other types of disabilities?
Research over the past 20 years, including the most recent reviews referred to above, has consistently shown that particularly those with intellectual disabilities are:
- More likely to still be in institutions and in grouped settings, where they don’t own their own home
- Least likely to be employed
- Least likely to participate and be an active citizen. When they engage in leisure, cultural activities and sport, this is almost always disability-specific and segregated. Disability specific activities are not in themselves an issue – they can be highly valued and valuable. Sometimes this will be the only way that some people might be able to actively participate in those activities due to their need for specialist equipment, adapted approaches, etc. However, disability specific activities often are the only way that many people participate, which does not support their inclusion in society more generally.
Another key finding is that the higher the support needs of individuals, the poorer their outcomes. Although they need the most support to take advantage of opportunities available to them at home and in the community, research has shown they often tend to receive the least staff contact and assistance, and what they do receive is often not effective at supporting their participation and inclusion. Reasons for this include:
- low expectations and a lack of strengths-based thinking in intellectual disability services – right from early years.
- •An assumption that caregivers (both paid and informal) just know how to support this group of people. Providing person-centred support that both meets the sometimes complex physical and health care needs of those with significant disabilities AND helps them to be active, included and contributing members of their community requires a substantial and varied skill set and an ability to tailor support to each different individual supported.
Your work promotes high-quality, community-based, and person-centred services for people with disabilities. What does that look like in practice?
Before looking at what it might look like at the individual level, it is helpful to consider what it looks like at the system level. Essentially, there are 6 key principles that summarise what a system of high-quality, community-based and person-centred services would look like.
Holistic - Services attend and respond to the whole person across their whole life and in every aspect of their life. When families are primary caregivers, then services consider the role and needs of the whole family.
Outcomes-focused - Supporting a good quality of life for individuals, and their families where appropriate, in the community should be the core business of the service system. Services work in collaboration with natural supports to support the person to have safe, healthy, connected, included, self-determined lives with the opportunities to work towards and achieve some personal goals. A key part of this is people living in a home of their own and receiving services they need in a way they need them.
Person-centred, positive and proactive - The person is at the centre of all activity (not just planning) and all elements of their lives. Support is both positive and proactive – working on the basis that people have skills and abilities, not just disabilities, giving people the opportunity to have new experiences and develop; the system makes the most of every opportunity for people to experience a better life - Not waiting for a crisis to happen before providing appropriate support. Focusing on preventing the need for behavioural and mental health services. No one is seen as not able to live in their own home in the community – the focus is on providing the support the person needs to do this. No support is just about doing for or to people. All support provided focuses on helping the person be and remain as independent as possible.
Equitable and empowering - All people with disabilities have their human rights respected and basic needs met with access to high-quality services, no matter their type or level of disability, age, gender, race/ethnicity, language, sexual orientation, or geographic location. Services provide just the right amount and type of support so that people can be as independent and self-determined as possible. People are supported to be involved, as much as they can and want to be, in decisions about all aspects of their lives and their services.
Seamless: coordinated support and smooth transitions - People transition smoothly from one period in life to the next and from one service to another (continuity of services), and their support is coordinated, not fragmented. Coordination across systems at all levels and for all types of services is key to a seamless experience. People do not have to be concerned about how their services are funded, as the coordination and budgeting are done behind the scenes. Nobody is passed “from pillar to post” - coordination between providers/funders is the aim.
Sustainable: designed to last - Available resources are maximised and used efficiently with a long-term view to maintenance and quality. This is both at an individual level and a system level. To understand what this looks like for individuals, the best way to understand what good support looks like, especially at the individual level, is to see it. As part of the presentation at the Conference, photos and videos will illustrate what is possible.
What shift in thinking or action would you like to inspire among this year’s Conference audience?
I would like people to leave the session at the Conference with a renewed and clear vision of what is possible to achieve and what good services look like for people with intellectual disability, in particular. I hope everyone’s expectations might rise and remind people that no one is too “disabled”, “complex”, “severe” to be included in society – living in a home of their own, participating more in all the opportunities available at home and in the community, having more choice and control, being more included as a valued member of their community, becoming more independent. However, the more severe or complex people’s needs, the more skilled the support needs to be. Secondly, I would like people to understand the importance of including those with the most severe disabilities in any projects and pilots, service developments, policies, evaluations, etc., right from the beginning. Increased understanding that if we create a service system that can support this group of people, then the system will have the services, staff, technology, education system, community resources, etc. that will support everyone. This is also really key to changing societal attitudes and raising expectations – seeing people with the most severe disabilities participating and contributing, even if it is with lots of support, is likely to be the most effective way of changing how society thinks about people with disability more generally. Finally, I would love to think that people might also understand that we need a commitment to evaluating the outcomes of services and collecting data that actually allows us to know whether the UNCRPD is being realised over time – Living situation is important, but by no means the only factor that impacts the experiences of people with disabilities.
References for further information:
[1] Šiška, J. and Beadle-Brown, J. (2020). Transition from Institutional Care to Community-Based Services in 27 EU Member States: Final report. Research report for the European Expert Group on Transition from Institutional to Community-based Care.
[2] Mansell J., Knapp M., Beadle-Brown J. and Beecham, J. (2007). Deinstitutionalisation and community living – outcomes and costs: report of a European
Study. Volume 2: Main Report. Canterbury: Tizard Centre, University of Kent.
[3] Policy Department for Transport, Employment and Social Affairs
Directorate-General for Cohesion, Agriculture and Social Policies (CASP) Independent living of persons with disabilities in the European Union. Authors: Jan ŠIŠKA and Julie BEADLE-BROWN
PE 759.355 - November 2025. https://www.europarl.europa.eu/thinktank/en/document/CASP_STU(2025)759355