Consultation: Your Say …. Ordinary Lives in Ordinary Places Draft Plan for Effective Participation of People with Disabilities and Families in Decision Making Consultation: Your Say ….

What is the Plan about? This is a Plan for the HSE and Government The plan is to make sure that people with disabilities can take part in making decisions that are important to them in their own lives, and in the lives of others

Introduction People first Citizens of Ireland – with Rights and Responsibilities Have the Right to Participate in All Aspects of Life in Ireland People with disabilities are often seen as people that need to be cared for; so they are not part of decisions Families are often left out of making decisions also This attitude needs to change

People need to be Involved in Decisions About Their Lives About Where they Live What they Spend their Money on And lots more ……. We must put the supports people need in place This is our vision for our Plan for Effective Participation in Decision Making

What do you Think? Do you think that people with disabilities and families should have more say in decisions that affect them? Can you tell us why ?

Transforming Lives Transforming Lives set up by Government to see how people can get the Supports and Services they want to live their lives. These services are funded by the HSE. Transforming Lives asks: Who makes decisions about people’s lives? How are these decisions made? Everyone has the Right to Make Decisions about their Life

How Working Group 3 Made the Draft Plan Working group 3 was set up in 2014. Some people with disabilities were on Working Group 3. They set up a Guidance Group to include more people with disabilities. The Guidance Group said that they wanted to be part of Working Group 3. The two groups got together and become one big group called Working Group 3. We had 7 meetings to make the draft Plan

Use of the term “Disability” We talked about the word “disability”. Some people didn’t like the word, others thought it was OK. 3 organisations said that they would hold some meetings to talk about this word. We hope these meetings will be finished so that we can put this work in the plan also. We agreed that we would use “person with a disability” or “people with a disability” in the plan.

Learning from Others Research: The National Disability Authority are going to do some research about how decisions are made in other countries. This will be put into the final plan. Consultation: We are also asking other people what they think of the Draft Plan. Today we are talking to you. Other people can also give us feedback. There is a form at the end of the short version of the draft Plan – pages 36-38

What is Effective Participation? It is having knowledge and the freedom and the power to use it. It is having the right to make your own choices and decisions. It is not tokenism. It is about treating everyone equally. It is about changing attitudes and culture. Two Important Principles: 1. Human Rights - everyone has the same rights 2. Equality / Disability Equality – everyone is equal

Many Levels of Decision Making Personal decisions - in your own life, about yourself Local decisions - for a group of people in your area Regional decisions - for a group of people in a bigger area of the country, like Munster or Leinster National decisions - for people all over Ireland At local, regional and national levels people with disabilities do not have their voice heard enough We want this plan to change this.

Stages of Decision Making Planning a policy Writing a policy Making the policy happen Checking if the policy is being put into action Checking if a policy is working People with disabilities, and families, need to be involved at every stage of decision making.

What happens at the Moment? Too Many People from HSE, Government, service providers, and organisations who work with, or for, people with disabilities, on groups who make decisions. Not Enough People living with the experience of disability, and families, on groups who make decisions Working Group 3 said : “This is not right”

Barriers: Something that blocks you or makes it hard to do something Some barriers are easy to see Some are hard to see Bad Attitudes Towards People with a Disability Difficulties with Communication People Not Paid / Places not Accessible Lived Experience of Person with a Disability not Valued Not having enough Knowledge to take part Hard to Understand How Meetings Work Lack of Change

What do you think? Are these the biggest barriers People with Disabilities and Families face, when they want to get involved in Decision Making? Are there any other barriers we should include in the Plan?

Values Values are the things that we think are really important when we are working. They connect things together and explain why we do the things we do. Working Group 3 agreed that there are 4 values that are the most important ones for effective participation They are all connected to each other. 1 2 3 4

1. Autonomy – This is about ……. Having the freedom and the power to make your own decisions. You might need support to do this sometimes. That support should be there for you. When people are making decisions about policy, they should show that they are thinking about freedom and power to make decisions. If autonomy is a real value, people with disabilities and families will be included in decision making at all levels, because their voices and opinions are valued.

What do you think? Is Autonomy an Important Value? Will Autonomy Support Effective Participation in Decision Making?

2. Respect Respect is really important in all relationships. It means that people trust each other. It means listening, valuing experience, respecting privacy, treating information about people with confidentiality We must respect people and their decisions when we are making policies. If respect is a real value, more people with disabilities and families will be involved when decisions about policy are being made, because their experience is respected.

What do you think? Is Respect an Important Value? Will Respect Support Effective Participation in Decision Making?

3. Creative Responses – This is about …… Being open to new ideas and new ways of working Listening and finding ways that work well for each person Understanding that one size does not fit all Finding ways for you to understand information and make your own decisions If creative responses is a real value, we will see the HSE, and other bodies, change the way they work, to include people with all kinds of disabilities and families in decision making

What do you think? Is Creative Responses an Important Value? Will Creative Responses Support Effective Participation in Decision Making?

4. Mutual Support – This is about ………… How we all support each other And how we all work together It is important when we make decisions in our lives, that we understand that relationships, and the other people in our lives, are important. When we make decisions about policy it is important that people with disabilities and their families have the support they need to take part. If mutual support is a real value we will see changes happen in the way the HSE and others work with everybody, all the time. It will be about real inclusion and community engagement.

What do you think? Is Mutual Support an Important Value? Will Mutual Support Support Effective Participation in Decision Making?

Supports to make sure that People Disabilities are Effectively Involved in Making Decisions 2. Make Communication Better 1. Change and Challenge Attitudes 6. Action - Make Change Happen 5. Value Experience and Knowledge 4. Improve Accessibility 3. Make Meetings Work Better Value: Mutual Support Value: Autonomy Human Rights Equality Value: Creative Responses Value: Respect

Change and Challenge Attitudes Make Communication Better Make Meetings Work Better Improve Accessibility Value Experience and Knowledge Action – Make Change Happen Listen Actively to People Value Experience and Expertise Make sure people have the power to be “experts” Offer Training Offer Support Talk Directly with People Ask people how they want to communicate (sign language, audio, and lots more) Use Plain English Involve People in Planning Accessible Places Welcoming Introduce All Ice Breakers Lots of Breaks Good Support Good Chair Clear Agenda & Notes Different Media Pay People for time / expenses Accessible Venues (all areas including restaurants and other facilities) Accessible Transport Respect Experience Provide Good Support Make Sure Everyone has their Say Make sure everyone knows they have important role to play After taking part Make sure change happens Have good feedback systems Check impact of decisions on people’s lives – track over time

What do you think? Are these the most important Supports People with Disabilities and Families need, when they want to get involved in Decision Making? Are there any other Supports we should include in the Plan?

Strategies Going Forward HSE 9 Community Healthcare Organisations (CHO’s)

HSE – Proposed Consultation Structure HSE Director General National Director Primary Care National Director Social Care National Director Health & Wellbeing National Director Mental Health National Implementation Task Force 2014 Chief Officers - 9 Community Healthcare Organisations Heads of Social Care - 9 Community Healthcare Organisations (CHO) 9 Community Healthcare Organisation (CHO) Disability Committees National Disability Committee Two way communication

Working Group 3 recommend ……………. Lots of Points of Contact: Conferences, discussion groups or workshop days Online ways of communicating could be used Develop local self-advocacy groups People need to be on committees at a regional and national level Regular updates to tell people what is happening. Action needs to be taken. If no action, people should also be told about this.

What do you think? Are these the most important things we should include in the Plan for the Future? Are there any other things we should include in the Plan for the Future?

Feedback on the Draft Plan Is there anything you think is missing from the Plan? Is there anything in the Plan that you really liked? Have you any suggestions for how the final plan could be presented? Is there anything you think could make it stronger?

Conclusion We want this Plan to turn into Action Thank you for your Time and your Expertise