Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750348703.pdf (Ireland)
Submission to the Joint Committee on Children, Equality, Disability, Integration and Youth On the general scheme of the Assisted Decision- Making (Capacity) (Amendment) Bill 2021.

24January 2022 This document is written in font 12 Verdana in line with Inclusion Ireland plain English guidelines.

1 1.

Key messages 1.1 The Assisted Decision-Making Act was enacted in 2015 and is not yet fully commenced.
There has been a long lead in time, yet now there is an accelerated process to have an operational Decision Support Service by Summer 2022.

The consequence of this is a lack of meaningful consultation with people with intellectual disabilities and adequate time to ensure the Act will be effective and equitable for those it should serve.
1.2 All public consultations must be conducted in a way that includes people with intellectual disabilities allowing for reasonable timelines and accessible documents and information.

The consultations about the codes of practice of the Decision Support Service and the present Amendment did not allow for the participation of people with an intellectual disability.
This is a significant concern because people with intellectual disabilities often need lifelong support with their decisions so the Assisted Decision Making Capacity Act will have a huge direct impact on their lives.

1.3 The Codes of Practice should be made available in an accessible formats .
1.4 The Codes of Practice should be reviewed within a year of their implementation with the participation of people with disabilities and their representative organisations as it is only when the service is operational that it will be possible to know what works and doesn’t work in reality.
1.5 Much of the information surrounding the amendment focuses on the way people are going to be assessed and how people should undertake their functions and roles but there is no code of practice at present for people who are going to be assessed.

There should be a code for the “relevant person” in accessible formats.
1.6 There should be training and capacity building requirements regarding supported decision-making and the guiding principles for all involved: family members, friends/supporters, professionals, and carers.

2 1.7 The is little mention of intersectionality issues in the general scheme nor the codes of practice and how they will be addressed.

There needs to be more clarity around how assisted decision making will need to be considered across all points of law.
This is particularly relevant for women with an intellectual disability and people with disabilities coming from ethnic minorities.

1.8 The assessment of capacity and how that will be operationalised is of particular concern.

Substitute decision making will be in contravention of UNCRPD.

It will need to be abundantly clear that any assessment process will be led by the relevant person and that any assessment will be overseen by two professionals without putting undue pressure on the person.
1.9 Access to supports to communicate one’s will and preferences is essential.

There is mainly mention of verbal communications but it is key to think about people who cannot communicate verbally.

The use of alternative and augmentative way of communications (AAC) should be better highlighted.
1.10 All examples chosen in the codes should reflect the diversity of experience and the complexity of decisions 2.About Inclusion Ireland Established in 1961, Inclusion Ireland is a national, rights based Inclusion Ireland uses a human rights-based approach to its work.

2.1 advocacy organisation that works to promote the rights of people with an intellectual disability.
2.2 This recognises persons with an intellectual disability as rights holders with entitlements, and corresponding duty bearers and their obligations.

Inclusion Ireland seeks to strengthen the capacities of persons with an intellectual disability to make their claims and of duty bearers to meet their obligations.
2.3 The vision of Inclusion Ireland is that of people with an intellectual disability living and participating in the community with equal rights as citizens, to live the life of their choice to their fullest potential.

Inclusion 3 Ireland’s work is underpinned by the values of dignity, inclusion, social justice, democracy and autonomy.
3.Amendments to the Assisted Decision-Making Capacity Bill 3.1 As an advocacy organisation at Inclusion Ireland our primary concern is the voice of people with an intellectual disability and lending that voice to their rights.

Their voice has been largely left out of this consultation due to the extremely tight timelines and lack of accessible information.
Any inclusive consultation should be a roadmap for how people with intellectual disability should be included in a legislative process which will directly impact on their lives.

3.2 Importance of inclusive consultations Inclusion Ireland has significant experience of engaging with people with intellectual disabilities and their families on issues that affect them.

Their views and experience are essential for our work.
To ensure that the consultations we organise are inclusive and meaningful for them, consultations need to have: a reasonable deadline so people have time to participate in the • public consultation through events or questionnaires with the support they need.

• accessible documents that are easy to read and to understand.

For those who cannot read, more inclusive ways to communicate like videos or face-to-face meetings might be needed.
support to enable everyone to participate in events and ensure that • the event is organised in an inclusive way (Easy to read Agenda & materials, instructions to speakers, event format etc.)

4 effective ways to reach out to people through different ways: • Internet, post, face-to-face events, and always including those living in congregated settings or nursing homes.

For some people with higher support needs, longer timelines are • required to enable them to be included in the process.
3.3 There needs to be efforts made to make information in any public consultation as accessible as possible to those it will impact on.
People with intellectual disabilities have not been in a position to participate in this current consultation process or that of the codes of practices of the Decision Support Service 3.4 While we welcome the intended operation of the Decision Support Service in June 2022, we regret that this key final process is rushed and excludes people impacted directly We do hope that a reviewing process regarding the Act and the codes will take place within a year after its commencement and include people with an intellectual disability.
3.5 Recommendations: • Future public consultations should give reasonable time to enable the participation of all.

• The codes should be reviewed within a year of their implementation with the participation of people with disabilities and their organisations.

• Codes of practices and the 2021 General Scheme should have a summary in Easy to Read or videos in an accessible format.
3.6 A right-based approach in the codes and the amendment Ireland ratified the UNCRPD, therefore we must uphold its articles in all aspects of live.

Substitute decision making flies in the face of UNCRPD and we must ensure that there is a rights based focus to all assessment and procedures laid out in the Act.

Assessment should only serve to help provide the correct level of support so that a person’s rights and will and preference can be upheld.
3.7The entirety of the information in the codes of practice and the amendment was intended for all type of stakeholders, except for people 5 who are going to be assessed.

They should be in a position to say how they would like the assessment to take place and should be aware of the consequences assessment holds for them.
The codes were targeting all sort of social and legal professionals, friends, and carers but no code has been made for the so called “relevant person.” 3.8 While the codes talk about people who will be involved either the assessment either in the support or monitoring, and their responsibilities, it is key that the main focus is to guarantee people’s rights through the implementation of the guiding principle and strong safeguards.
3.9 It is important for the codes to consider the complexity of the situation people can find themselves into when a decision needs to be made.

The complexity is also linked to the wide diversity of supported decision-making needs.

In this regard, there should be more mention of the access to support to communicate one’s will and preferences.

It is of paramount importance for people with high needs of support who might not be able to communicate verbally.
The codes at present, do not mention the use of augmentative and alternative ways of communication.

3.10 The diversity of situations can also be seen through intersectionality.

While certain situations require particular attention as they expose people to more vulnerability, they have not been mentioned in the codes or the amendment.
In this way, we think that women with disabilities and people with an intellectual disability coming from ethnic minorities should be carefully considered during the assessment.

3.11 Finally, there should be capacity building of all stakeholders regarding the right-based approach through the respect of guiding principles highlighted in the codes and the Act.

The capacity building when it happens should be led by people with disabilities themselves.
3.12 Recommendations: • A code should be made for people who are going to be assessed to tell them more about their rights, explain the process and the consequences.

• There should be training and capacity building requirements regarding supported decision-making and the guiding principles for all involved: family members, friends/supporters, professionals, and carers.
6 • There should be mention of intersectionality in the codes and the Act to ensure that specific situations are taken into account during the assessment and monitoring of decision- making roles.

• Access to supports to communicate one’s will and preferences is essential.

It should be more reflected in the codes and Act, especially when it comes for people who cannot communicate verbally.

Inclusion Ireland receives support from the Scheme to Support National Organisations (SSNO) for this work.
The SSNO is government funding administered by Pobal.

For further information, contact; Guillaume Jacquinot, Advocacy (Policy) Co-ordinator 01 855 98 91 / guillaume@inclusionireland.ie 7