“Residential institutions can never be the ‘preferred option’ for anyone”, Inclusion Europe has stressed in its analysis of the EU Council conclusions on Independent living.
It is the first time that the Council of the European Union, which represents all EU member states, comes to conclusions on the topic of deinstitutionalisation.
The EU Council made a number of statements Inclusion Europe fully agrees with and even wants to strengthen, for example:
- The European Structural Funds are very important for developing community-based support.
- Family carers must be better supported, as they often compensate for a lack of community-based services available for their relatives.
- People with disabilities should be more involved in decision-making when transitioning from institutional to community-based care.
- People need to be able to autonomously decide where to live (this is imperative, not just preferable as suggested in the Council’s conclusions)
- The scale and number of existing residential institutions must be reduced, and affordable and high-quality community-based solutions developed.
But Inclusion Europe also objects to some parts of the conclusions.
For example, the EU Council states that “the remaining residential institutions should support residents’ autonomy […] and cater in particular for the needs of dependent persons for whom community care is not the preferred option. It is essential to ensure safety, dignity and a non-discriminatory environment in all care settings.”
Residential institutions however can never be the “preferred option” for anyone, let alone for people with complex support needs. Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), which the EU has ratified, deals with “Living independently and being included in the community”. The General Comment clarifying what the article means stresses that it “extends the right to live independently and be included in the community to all persons with disabilities, regardless of their level of intellectual capacity, self-functioning or support requirements”.
Institutions are not an option
It is moreover not possible to “support residents’ autonomy” in an institutional setting, as institutions take away their residents’ autonomy. Neither is it feasible to “ensure safety, dignity and a non-discriminatory environment” in institutions, given that their residents are much more vulnerable and cannot be part of their community.
It must also be emphasised that the transition from institutional to community-based services naturally results in the closure of institutions. Unfortunately the EU Council does not address this issue in its conclusions. On the contrary, it states that institutions are a relevant option in the range of services available to people. But the UN Committee on the Rights of Persons with Disabilities has made it clear that “deinstitutionalisation also requires a systemic transformation, which includes the closure of institutions.” This should be recognised by the EU Council.
Inclusion Europe’s vice-president Senada Halilčević has stayed in institutions for a long time, and her message is clear:
Living in institutions cannot be called living. Living in institutions means separation from other people and humiliation. The thing that made me most angry was that I did not have the freedom to make my decisions and choose my way of living.
She has also pointed out that “an institution is not defined merely by its size. [Deinstitutionalisation is not the] mere relocation of people to apartments, houses or supported housing programmes.”
The EU Council should acknowledge this and take institutions off the list of acceptable accommodation options for people with disabilities.
Independent Living was a topic at the European Day of Persons with Disabilities organised by the European Commission in December 2017.
The European Pillar of Social Rights also stresses that support in the community is preferential for people with disabilities (and others).
Inclusion Europe is part of the European Expert Group on the Transition from Institutional to Community-based Care. The EEG has published a position paper on the funding of the European Union (EU) post-2020.
Click on a word which is in bold to read what it means.
It is never good to live in an institution
Inclusion Europe made some comments about what they wrote.
One of the main points we would like to make is that people with intellectual disabilities should not live in institutions.
Inclusion Europe agrees with the following things that the Council has said:
- The money from the European Union is important to support communities,
so that communities can support people who have a disability.
- People with disabilities are often looked after by their families,
because the government does not look after them.
These families need more support.
- When people go from living in an institution to living on their own,
some things have to be decided.
For example, where to live and who to live with.
- People who are moving should be more involved in making their own decisions.
The Council says it is better if the person who is moving makes their own decisions.
We say that the person must make their own decisions.
- There should be fewer institutions.
There needs to be more support in the community that people can afford.
But Inclusion Europe does not agree with everything the Council said.
This is what the Council said:
“The institutions that still exist should support people to make their own decisions.
For people who need more support,
institutions are better than living in the community.
Institutions should support these people.
It is important that people with disabilities are safe
and respected wherever they are.
They must be treated fairly and get the chances they deserve.”
Inclusion Europe does not agree with this.
We say that it is always better for people to live in the community.
Independent living is for everybody.
It is also for people who need more support.
The UN CRDP says that all people with disabilities have the right to live independently
and be part of the community, like everyone else.
The European Union has agreed with the UN CRDP.
Institutions do not let people live independently.
So it is not possible for people in institutions to make their own decisions.
It is also not possible to make sure that people in institutions
are treated fairly, because they are at risk of abuse.
If more people move out of institutions for good, it will be possible to close the institutions.
The Council of the European Union did not talk about this.
Instead, the Council said that institutions can be a good option.
But the UN CRPD says that we need to change the system
of people living in institutions.
Closing institutions is part of the change.
The Council should also make that clear.
Senada Halilčević is the vice president of Inclusion Europe.
She has stayed in institutions for a long time.
This is what she said:
“Living in institutions cannot be called living.
Living in institutions means that you are apart from other people.
The thing that made me most angry was that I could not make my own decisions.
I could not live how I wanted to live.”
Senada said that institutions come in many forms.
There are some institutions that are big.
Hundreds of people live there.
Other institutions are smaller, but they are still institutions.
The Council of the European Union should take institutions off the list
of places where people can live.
On Monday 4 December and Tuesday 5 December 2017,
held a celebration for the European Day of Persons with Disabilities.
They talked about independent living.
The European Pillar of Social Rights also says it is important that
people with disabilities are supported in the community.
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
Being visible and vocal on issues directly affecting millions of people requires your support.
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