Quality of life, and services for people with disabilities: In conversation with Julie Beadle-Brown and Jan Šiška on Inclusion Europe Radio
Julie Beadle-Brown and Jan Šiška talk to Milan Šveřepa about deinstitutionalisation, quality of life, and measuring quality of services for people with disabilities.
- Julie Beadle-Brown is professor in intellectual and developmental disabilities, Tizard Centre, University of Kent.
- Jan Šiška is assistant professor, Charles University Prague.
The conversation is focused on a book Julie and Jan edited.
- The book is called The Development, Conceptualisation and Implementation of Quality in Disability Support Services.
- It was published in 2021 by Karolinum Press.
Milan Šveřepa contributed to this book.
- Milan was interviewed about deinstitutionalisation, and about Inclusion Europe and our work.
- The book authors say: “Milan considers what he thinks has changed and what has not changed in the past 10, 15 years. He provides an extremely insightful and thought provoking overview of what is needed to ensure that community living is achieved for everyone, including those with more severe and complex needs.”
Resources discussed during the conversation:
- DECLOC report 2007 (.pdf)
- EU and deinstitutionalisation report 2020
- EASPD quality of services report done by Julie and Jan
Highlights from the conversation
- We haven’t move that far [in terms of ensuring inclusion in community and independent living].
- Especially people with intellectual disabilities, many remain in institutions.
- We know very little about their quality of life in the community, there is very little research.
- It is important to think about people with more complex needs from the beginning of designing services. They are mostly left out of independent living services.
- One way to assess quality of life, and quality of services for people with complex support needs would be observation.
- The book has more recommendations on how to assess quality of services for people with complex needs.
- One problem with assessing quality of services is that people themselves often don’t know what good looks like. What they should get from services.
- From decades of practice and research, we know how to deliver good community based services. We know what works.
- The question is, how to get people to do it? Why is it not happening?
- I wouldn’t say that there wasn’t progress achieved on deinstitutionalisation.
- For example in Czechia, there is a lot of people who moved out of institutions, big institutions; and now live like anybody else.
- Of course much more could have been done, especially for people with complex support needs.
- There are structural challenges all over Europe, [blocking progress on deinstitutionalisation]. The main one being lack of housing; high costs of living, renting apartments or houses.
- We know about changes in policy, about changes to systems. There are more people receiving personal budgets, or some forms of self-directed support.
- But we also know there are some places where that only applies to certain groups of people. And people with more complex needs, higher support needs don’t even have the opportunity to access it.
- This isn’t a problem only in Eastern European countries. There are more people in institutions in Italy or Belgium in 2019 than there were in 2007.
- States have responsibility to collect data that shows progress on how CRPD is realised. We don’t have that data. Which means we cannot create dissatisfaction: We are not getting there.
What would be your one piece of advice to decision-makers to do to progress inclusion, independent living?
- Stop planning, and doing pilot projects. Do it now, and do the real thing.
- Involve people from the beginning.
- Focus on people, not on buildings (obviously people need housing).
- The only way to change things is to move people out of institutions, involve them in their local community. You don’t change people’s attitudes by telling them, you change them by showing, doing.
- Measuring quality of services has impact on the actual quality of these services.
- But in some countries these measuring systems are so rigid they don’t evolve with the improved quality of services.
- There need to be enabling relationships for people, as support for them, improving the quality of their lives.
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