“Deinstitutionalisation: The present and the future”

Book cover: he Development, Conceptualisation and Implementation of Quality in Disability Support Services

The EEG (European Expert Group) is a coalition of organisations advocating to replace institutionalisation with family- and community-based support.

The EEG has played big part in establishing deinstitutionalisation as part of EU policies, and promoting the use of EU funds for this purpose.

The EEG has created a number of useful tools, such as:

From 1 March, Haydn Hammersley (EDF) and I will be co-chairing the group. We are taking over from Nadia Hadad (ENIL), who did a great job leading the group’s work last year.

It is a second stint as co-chairs both for Haydn (2021) and me (June 2017 – January 2020).

And I thought I’d mark this happy occasion 😉 by publishing parts of an interview on deinstitutionalisation.

The interview was done in spring 2020, and published in a book called The Development, Conceptualisation and Implementation of Quality in Disability Support Services.The book is available in print or as e-book.

The book was edited by Julie Beadle-Brown and Jan Šiška, who also conducted this interview with me. The interview is part of a chapter called Deinstitutionalisation and community living: The past, the present and the future.

From introduction to the chapter

“This chapter comprises two interviews. The first one was conducted with the late Professor Jim Mansell in September 2011 by Nick Gore. Jim was the founder of the Tizard Centre and a pioneer in the development of community-based services in the UK.  As an 18 year old student at Cardiff University he fought for the closure of a local institution, including starting a student charity to support 5 people to move from the institution into the community, living with them and providing the support they needed. In the 1980s he was appointed to the University of Kent to support the closure of institutions in the South East of England. In 1993, the Centre he established was renamed as the Tizard Centre.

The second interview was conducted in May 2020 with Milan Šveřepa, director of Inclusion Europe. In the interview below, Milan provides an extremely insightful and thought provoking overview of what is needed to ensure that the reality of community living is achieved for everyone, including those with more severe and complex needs.”

Interview with Milan Šveřepa (excerpts)

[Looking back at the 10 years since CRPD] What has not yet changed?

There are still hundreds of thousands of people segregated in “care” institutions. And even though it is a scientific fact that this is harmful to them, and even though they themselves keep demanding an end to this cruel practice, even though there is every legal, moral and even economic argument to end this situation – segregation policies persist and those trying to end them are the ones being asked to prove themselves.

There are still people with disabilities and families left completely on their own, without any support or recognition.

Most people with complex support needs are left out of the deinstitutionalisation efforts, as are children with disabilities.

Why do you think this might be?

We could spend days discussing stereotypes, interests etc., the fact that people with intellectual disabilities especially are considered and treated as second class citizens…

However, let me focus on one element: How to turn policy into practice. We know that being segregated in institutions is bad and that there are over a million people in that situation, and many more at risk of institutionalisation. But how do we actually solve this problem?

Are we able to offer a clear vision of how deinstitutionalisation is to be implemented? I think too much rests on principles, on broad and abstract concepts open to various interpretations, on individual responsibility and understanding. More specific guidance is needed, setting out clearer boundaries: We know why this must be done, we know what the results should be and we can offer examples of what needs to happen. However, more work needs to be done on how to actually do it.

Where do you think we should focus our attention now?

Ending segregation in “care” institutions is critical.

  1. Segregation is a profound violation of human rights, a disgraceful waste of people’s lives and potential.
  2. These large-scale “care” institutions are nothing but a pressure-cooker of risks and problems; far from the safe environment for which they are being marketed. The spread of Coronavirus in them was just the latest and quite clear demonstration of this.
  3.  “Care” institutions need to be replaced to free resources for desirable forms of community-based support. As long as “care” institutions remain in place, they will continue to suck up and waste most of the resources available (alongside human lives), leaving those outside stranded for funding. Any meaningful progress towards inclusion goes via the closure of “care” institutions and redirecting of the resources they have at their disposal.

What is institutionalisation and segregation?

What do I mean by “care” institutions? Places where people live:

  • in large groups (based on disability for example),
  • segregated from others,
  • their lives being directed not by their wishes and needs but by the institution’s rules and regulations.

Segregation is done both by location (away from where people normally live, behind walls or fences) and by activity (sleeping, “working”, leisure time always with the same people one didn’t choose, in the same place).

(Involuntary) congregated housing + Spatial and activity segregation + Subjugation to someone else’s rules = Institutionalisation

Deinstitutionalisation is therefore about removing these negative elements.

It’s about providing support and care that puts the person and their wishes and needs at the centre of supporting them to be part of the world around her or him – to be part of a family, to have friends, to have a job, to be good at something.

It’s also about supporting families in such a way they can actually be families, for all their members – not facing the “choice” of either dedicating all resources and energy to one member of the family, or removing that member from a family and placing her or him into an institution.

Who are or who should be the different actors in the process of change? What roles should they play?

There are many obviously, and each will have a significant part to play. Each actor’s role will be different. Which is a banal statement, but I am often under the impression that it is not applied when advocacy [lobbying] strategies are designed. I think many of the advocacy efforts to promote deinstitutionalisation are driven by the same arguments and expectations regardless of target audience. And of course, there is a big difference between what role an EU official has to play, or national policy-maker or someone representing service providers.

Each of them has a different role to play. They also have different needs in terms of how they work and what problems they are trying to solve. This needs to be recognised in advocacy.

Clear decision, clear targets to move away from institutionalisation

Of course, the solution starts with a political decision that “care” institutions must close and be replaced with proper support in the community. Such decision must come with clear targets, including the development of family- and personal support; as well as stopping new admissions.

Then it comes to implementation, and this has different levels and contexts. It can be useful to conceptualise the “the DI process” with policy-makers at EU level or in national governments. For others, such as service providers or implementing authorities, more practical approach is needed, with clear advice on what kind of solutions they are expected to implement and deliver.

Please, no more seminars where participants are asked over and over to brainstorm “what should deinstitutionalisation look like?”. That does nothing but sow confusion and uncertainty.

And of course, people with disabilities must have prominent role in any changes that are to be successful. A lot of those segregated in “care” institutions are people with intellectual disabilities; this must be recognised in how decision-making panels are being populated.

Recognition of the role of family members is crucial too.

In the DECLOC study (.pdf), we proposed that attention was needed in three key areas:

  1. Creating and sustaining dissatisfaction with the current situation
  2. Creating a shared vision for the future
  3. Ensuring there are first steps for people to follow to get started on the process.

Do you think there is enough dissatisfaction with the current situation of people with disabilities? Why? How can we create more dissatisfaction?

Dissatisfaction? Nowhere near enough. Most people, including those with decision-making powers, have no clue what “care” institutions really are and what it means to be segregated in them. What it does to a person.

From we know about different countries and how they succeeded to make significant changes towards deinstitutionalisation, major human rights violations and abuse need to be publicised.

We need to demand that quality inspections in social care services are led by user-representatives, that the results are made public and that there are consequences to misconduct.

We need to take the fight to the “care” institutions. I have had enough of justifying why people should not suffer in segregation. Let’s start openly and clearly describing what a problematic mess “care” institution are – why they are wrong morally, professionally (outdated, backward, not based in evidence) and financially (a waste of public money).

In some cases around 30% of “care” institution’s budget goes not towards “care” for people but towards maintenance of buildings, greenery and so on. It is basically a horticulture programme paid with social care money.

Control of budgets needs to move away from service providers to people who need care and support. The money needs to follow people into the community and be counted and tracked to make sure it is not lost or wasted.

Do you think the vision of where we are trying to get to is clear enough and shared by enough people?  Why? What is needed for a clearer vision?

I believe the vision of what deinstitutionalisation is trying to achieve is clear for most advocating for it. But we must find a better way of communicating it and making it attractive for all concerned. We must find a way to describe it in clear, everyday language.

We need to help everyone concerned visualise the result, to see clearly what lies behind the abstract concepts and principles – what it means for every-day life experience. We need to learn how to paint an “image people want to be part of”.

Clarity of thought and action, trust in ability to deliver

And it is not about the name – even though it really does not help – it is about how the communication is being done, who is being involved and so on. There needs to be clarity of thought and action, and there needs to be trust in the ability to deliver.

Deinstitutionalisation advocates need to get out of defensive mode, which drives most of communication around deinstitutionalisation. We are constantly being asked – and sometimes actively offer – to produce still new evidence that living in the community is good for people. Let’s just not.

Whenever someone asks for “more evidence” that independent living is better than segregation in institutions, let’s just ignore them. There is plenty of evidence already. “Sometimes asking for more evidence is just another way of justifying human suffering”.

Instead, we need to see evidence of what is going on in “care” institutions.

There needs to be a stop to saying things such as “deinstitutionalisation is such a difficult word“ or “it is a complex process”. Of course it is – but that doesn’t mean this needs to be repeated all the time. We need to be building confidence in people that what we are asking them to do is right, clear and that we trust in their capacity to do it.

What are the next steps for organisations such as Inclusion Europe and how can others help in the sustaining the “good fight”?

We will continue our advocacy and campaigning to end segregation both at EU and national levels, where we will support our members to achieve this objective.

The national-level work is critical, because that is where decisions about spending EU money are made and more importantly, that is where the vast majority of social care funding comes from.

What we want to see is focused on three areas:

  1. Preventing institutionalisation. Developing support services and changing the legal and policy systems to ensure people do not end up in institutions in the first place.
    The reforms that have been achieved so far are limited in this respect: A lot of effort goes into getting people out of institutions, while these remain open and new people replace those who left.
    Reforms to child protection are not followed by changes to adult services: Once a young person with disabilities reaches adulthood, they are likely to end up in an institution anyway.
    Lack of independent living-oriented support and education means when family members cannot provide care and support, people with disabilities will end up in institutions.
  2. Proper support for those affected by institutionalisation. There has been too much attention on housekeeping, cooking and other such skills. These are important and people who spent whole lives in institutions lack them. But more important still are social skills how to build and maintain relationships.
    Proper support also includes recognition of the psychological harm caused by institutionalisation, how it affects peoples’ behaviour and how they must be supported to deal with it. 
    Finally, proper support means support for everyone including those who have complex support needs.
  3. And of course, changes to relevant laws and policies, especially to legal capacity law and the implementation of supported decision-making.

The Development, Conceptualisation and Implementation of Quality in Disability Support Services. Karolinum, 2021. The book is available in print or as e-book.