“The state should not rely entirely on families to give informal support”

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...

``The state should not rely entirely on families to give informal support``

Michael Bach

Click here for the easy-to-read version

Inclusion Europe met with renowned legal capacity expert Michael Bach to learn more about the most recent good practices on legal capacity.

For a number of years, Michael Bach was the Executive Vice-President of the Canadian Association for Community Living (CACL). He is currently the Managing Director of the Canadian Institutes for Research and Development on Inclusion and Society.

How can we ensure legal capacity is on the political agenda?

It is key to involve civil society, to build partnerships and alliances to get this topic on the political agenda… CACL joined forces with associations representing people with mental health issues or seniors, as well as with allied disability rights organisations, including organisations representing people with physical disabilities, brain injuries and autism. In this way, we established a shared understanding that we needed to reform the legal capacity system. What we have been focusing on is for all people to enjoy legal capacity.

What is the greatest obstacle in access to legal capacity?

In Canada, most people still think that you must be able to understand the consequences of your decisions, for example regarding your own health, to get legal capacity. This also used to be the law. While we have successfully advocated for mental capacity to stop being a prerequisite to be granted legal capacity, some conditions still need to be in place.

How did the Canadian law change?

The system has now shifted to what we call a capabilities approach. That means we need to support people in building the ability – sometimes shared with others – to understand and appreciate a healthcare or other legal decision. The problem with the law as it stands is that it requires the person concerned to be able to exercise that capability on their own, all by themself. We’re saying that the capability to understand and appreciate can also be based upon the interpretation, provided by supportive others, of the will and preferences of the person, whose intentions guide the making of the decision. This interpretation can be made by their support network, by people who know them well. In this way the person in question can exercise control and have power over the respective decision even if they don’t fully understand all of its nature and consequences, so long as the people around them do.

Supported decision-making

You are advocating for supported decision-making to be legally recognised. Why is that so important?

The recognition of supported decision-making by the law means that someone can appoint another person to be their decision-making support person, and also their legal representative. In the case of a person with complex support needs, who might not be able to make that appointment, support persons could ask to be appointed. To be someone’s support person, a relationship based upon personal knowledge, trust and commitment is needed. That gets validated and then this person has a legal status in the life of the person who is being supported – not as a guardian but as a decision-making supporter and possibly as a legal representative of the person to legally execute decisions guided by the person. Therefore, this relationship cannot be called guardianship, but rather legal support and representation.

How can the different stakeholders facilitate supported decision-making?

The state should pay professionals who are specialised in building support networks and not rely entirely on families to give informal support. We must not overburden families with the responsibility for supporting the decision-making of their family members, although they should be involved if the person wishes and requests that.

The state should  […] not rely entirely on families to give informal support.

Decision-making support persons help a person create a person-centred plan that identifies their short and longer-term life goals. The plan helps the person and their supporters guide decision-making, but they are not responsible for making sure that this plan is resourced, which is often the current situation. Disabled People Organisations should not be a person’s support network, but they could provide assistance in facilitating the development of a support network and in assisting people to develop person-centred plans.

Do you have any concerns about supported decision-making practices?

We need to be careful not to get into a situation where just because a person may have an intellectual disability, they are automatically required to have a formal support network. We should not be imposing supported decision-making on people as a condition, say, for getting access to benefits or for having control over their own money. Not everyone needs a formal support network around them. This could end up imposing restrictions and barriers on people, all in the name of supporting their rights. That’s one of the risks we face as the system gets implemented in Canada and elsewhere. Let’s not assume that everyone needs a network or interpretive support. If we do that, we are just reproducing paternalism.


Interpretive support for people with complex support needs

For people with complex support needs, you are suggesting using interpretive support. What does that mean and why is it so important?

If support persons understand things that matter to those they support, then they can interpret their needs and based upon this, and plan support that is person-centred. Through the plan, the will and preferences of the person being supported will be turned into real actions by the support person, a way to empowerment.

What is the best way to interpret the will and preferences of the person being supported?

This must begin with establishing an understanding of the core values and concerns that matter to a person, using that as a basis for guiding small and large decisions, and for interpreting what may appear to be conflicting preferences. There will be situations where support persons differ about how to interpret a person’s will and preferences, and this could relate to major decisions like where to live, or health care treatments. So there needs to be a legal definition of what constitutes “best interpretation”, including a set of criteria. So far, there is neither jurisprudence nor practice on this matter. What we propose is that people should get assistance from community agencies with expertise in this area and, as a last resort, a specialised tribunal that could deal with issues of conflicting interpretations and consent and capacity in these situations. Either this competence needs to be developed within existing tribunals or specialised tribunals will need to be created.


Learn more:

Choices – a platform for supported decision-making

Inclusion Europe’s stance on legal capacity

Easy-to-read version

Click on a word which is in bold to read what it means.


“We need a law for supported decision making
for people with intellectual disabilities”

Inclusion Europe had a meeting with Michael Bach.
Michael Bach knows a lot about legal capacity.

Michael Bach is from Canada.

He is the director of an organisation that works for
the rights of people with intellectual disabilities.

Michael says that in many countries,
the laws on legal capacity are not good.

For example,
in Canada people with intellectual disabilities
must be able to make decisions on their own
to keep their legal capacity.

But Michael thinks that everybody should keep
their legal capacity even if they need
a support person to make their decisions.

This is what we call supported decision making.

For example, even if you need someone to support you
in deciding who to vote for,
you should still have the right to vote.

If you can’t make a decision just by yourself,
this doesn’t mean that you can’t make it at all.

Support persons can explain what
a person with intellectual disabilities wants.

A support person is someone who knows well
the person with intellectual disabilities they are supporting.

Michael thinks that the law should accept
that people with intellectual disabilities
have a support person in making their decisions.

Michael also says that these support persons
should be paid.

Support persons should not only be family members.

Support persons would help people with intellectual disabilities
to understand what they want in life.
But they would not be responsible for making these goals a reality.

Still, people with intellectual disabilities should be able
to choose if they want to have a support person or not,
because not everybody needs one.

Thanks to the help of the support person,
a person with intellectual disabilities can learn
how to achieve their goals.

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. 

Become Inclusion Europe supporter and help us keep doing our work.