Inclusion Europe Radio

In this episode, we talk to psychiatrist Jan Pfeiffer about mental health reform in Czechia and how this helped create a broader European deinstitutionalisation movement.

As a psychiatrist Jan realised early on in his work that institutions were more harmful than helpful to the people who lived there. So, he decided to make a change. Since the 1980s he has been working to close institutions on both national and European level.

When the case of a young boy who had been forced to live in a caged bed in a Czech institution became public and gained international attention J.K. Rowling got involved. As more and more countries joined the EU, Jan and J.K. Rowling decided to take the issue of institutionalisation to Brussels.

Jan ended up working on this in many different countries. Key lessons include the importance of collaboration, using resources better, and keeping a clear focus on people’s needs and rights.

For this, Jan helped create the European Expert Group on the transition from institutions to community-based support (EEG).

Finally, Jan speaks about the impact of the mental health reform for people with intellectual disabilities, especially those with complex support needs.

This episode is co-funded by the European Union.

In this episode:

00:00 Introduction

03:32 Working with J.K. Rowling

06:29 Taking deinstitutionalisation to the EU level

11:34 EEG is born

15:46 Collaboration is important

22:04 Mental health reform in Czechia

28:15 Closing institutions is necessary for deinstitutionalisation

33:29 Focus on the people inside, not the buildings

39:02 People with intellectual disabilities and complex support needs in institutions

In this episode, we take you to Timișoara, Romania, to meet  Roxana Damaschin-Țecu.

Roxana is an economist by education, working to support people with intellectual disabilities to get out of institutions and to have a good life included in the community.

Roxana shares her journey, beginning in 2002, working closely alongside Elisabeta Moldovan, a self-advocate and survivor of institutional abuse.

Roxana talks about the need for community-based support for people with disabilities, about her work with self-advocacy organisation Ceva de spus. About development of housing with UnLoc, and about a social enterprise OilRight providing jobs for people with disabilities while reducing environmental impact.

She also discusses the challenges and necessary steps for deinstitutionalisation in Romania, emphasising the importance of collaborative efforts between public authorities, NGOs, and community partners.

### What's in this episode

00:00 Welcome to Inclusion Europe Radio

00:38 Introducing Roxana Damaschin

01:38 Eli's Story: A Journey of Resilience

05:22 The Self-Advocacy Organization

07:19 Creating Community-Based Support Services

11:10 Social Enterprise for Inclusion and Sustainability

14:07 Challenges and Future of Deinstitutionalisation

25:32 Housing

This episode was done with co-funding by the European Union.

In this episode of Inclusion Europe Radio, Milan Šveřepa talks with Freek Spinnewijn, director of Feantsa.

Feants is an organisation working to end homelessness in Europe.

The conversation is about homelessness solutions, focusing on the principles of the 'Housing First' approach.

Freek talks about the critical role of housing in ending homelessness, explaining that solving housing issues also helps tackle related challenges such as mental health and addiction.

The discussion expands to cover EU housing strategies, the connection between homelessness and disabilities - especially in regards to deinstitutionalisation -, and the importance of pragmatism in designing social policies.

### What you'll find in the podcast

00:00 Welcome to Inclusion Europe Radio

00:35 Introducing Freek Spinnewijn and Feantsa

01:12 Understanding homelessness and housing solutions

03:34 Challenges in policy making and housing

09:34 Homelessness statistics and institutionalisation

16:54 The intersection of disability and homelessness

27:00 Advocacy and policy recommendations

34:27 Conclusion and final thoughts

In this episode of Inclusion Europe Radio, Milan talks with Theresa Shearer. Theresa is the CEO of Enable, a member of Inclusion Europe in Scotland.

Theresa talks about what it means to be a good leader in NGOs and disability organisations. Theresa explains how working together with people from different areas helps make a bigger impact. She also talks about the importance of a supportive workplace culture.

Theresa shares her personal leadership journey and the story behind Enable’s successful personal assistance (PA) model. She explains how organisations need to adjust their approach depending on the culture and country.

They also talk about the key role of self-advocates in shaping what NGOs do. Theresa speaks about challenges for women in leadership roles, and how stories can help change laws and policies.

Episode highlights:

00:00 Welcome and Introduction

00:36 Meet Nick Crosby: Background and Work

01:16 Understanding the National Development Team

03:25 Internships and Employment Opportunities

04:59 The Small Supports Program

12:04 Principles of Small Supports: Relationships and Joy

14:18 Real-Life Success Stories

15:48 Building a Supportive Workforce

18:59 Challenges and Practicalities

19:29 Starting the Support Process

21:52 In-Depth Person-Centered Planning

22:53 Transition Process and Housing Adaptations

24:02 Challenges in Securing Housing

24:48 Creative Housing Solutions

26:04 Community-Based Support and Property Investors

32:18 Financial Benefits of Community Support

38:01 Adapting Small Supports Across Europe

44:17 Empowering Local Champions

00:00 Welcome to Inclusion Europe Radio

00:29 Meet Peter Frelin: Disability Debrief

01:12 The Accidental Journalist

01:55 Disability Debrief: A Global Perspective

03:00 Challenges and Insights in Disability Reporting

09:24 Navigating Social Media and Community Building

14:38 The Importance of Storytelling in Advocacy

20:38 Shifting the Conversation: Advocacy on Our Terms

21:52 Challenges of Justifying Disability Worth

22:43 Employment Issues and Proving Capability

23:53 Breaking Segregation and Institutionalisation

26:02 Government Policies and Disability Rights

26:16 Global Regression in Disability Support

28:10 The Role of Disability Organisations

31:13 Funding and Sustainability Challenges

37:28 Innovative Representation and Advocacy

40:00 Concluding Thoughts and Future Conversations

The current director of Inclusion International talks about disability rights advocacy and her future role in Disability Rights Fund.

Key points discussed include the importance of self-advocacy, the progress in topics such as deinstitutionalisation and inclusive education, and the need for practical tools for policy advocacy. The discussion also highlights the shift from simple awareness to active engagement and implementation of policies. The episode further explores the significance of plain language for broader participation and the evolving leadership within the disability movement. The executive director also talks about their upcoming role with the Disability Rights Fund and its objectives. Finally, they discuss the plans and expectations for the upcoming World Congress of Inclusion International.

00:00 Introduction and welcome

00:13 Global Disability Summit insights

01:50 Challenges and achievements in advocacy

02:33 The Role of self-advocates

05:25 Future directions and leadership

12:40 Importance of clear communication

14:32 Ongoing Issues and future challenges

19:15 Development challenges and knowledge sharing

20:10 Advocacy and practical solutions

21:04 Inclusive education and government criticism

23:33 Simplifying communication and expertise

26:03 Future leadership and network investment

30:44 New role and disability rights fund

33:37 World Congress and future Plans

Hanna Solovei, Raisa Kravchenko and Olena Tsarenko are representatives of Ukrainian people with intellectual disabilities and their families. They visited Brussels to present the situation in their country, discuss how it needs to be improved, and to learn about the work being done in other countries.

00:37 Sue Swenson's Journey: From Mother to Advocate

01:25 The Kennedy Fellowship and Legislative Impact

04:04 Challenges and Triumphs in Advocacy

08:37 The Role of Family and Personal Growth

12:28 Empowering Self-Advocates and Building Community

15:59 Personal Stories and Reflections

20:13 Charlie's Influence and Legacy

24:04 A High School Theater Journey

25:51 Charlie's Impact on Education

27:23 Inclusion and Social Norms

28:41 The Importance of Plain Language

29:34 Democracy and Disability Advocacy

30:49 The Role of Representative Organizations

32:32 The Power of Grassroots Movements

33:52 The Developmental Disabilities Act

39:51 Deinstitutionalization and Education

44:03 Global Perspectives and Personal Stories

47:38 Final Thoughts and Reflections

[00:01:40] - What are the Inclusion indicators?

[00:05:03] - Key findings

[00:10:15] - Challenges in data collection

**[00:02:08] - Challenges faced by people with intellectual disabilities**

Soufiane highlights barriers like stigma, communication challenges, inaccessible spaces, and fear of backlash from caregivers.

**[00:03:22] - Strategies for impactful self-advocacy**

Soufiane suggests collaboration with other organisations, sharing personal stories, engaging policymakers, and using social media. Leadership skills and clear goals are crucial.

**[00:04:40] Promoting inclusivity in self-advocacy groups**

Soufiane emphasises providing easy-to-understand information, ensuring diversity, sharing decision-making roles, and building long-term relationships with policymakers.

**[00:08:17] Challenges with tokenism and accessibility**

Guillaume shares examples of self-advocates facing tokenism and inaccessible public events, highlighting the importance of proper preparation and meaningful participation.

**[00:12:04] Advice for new self-advocates**

Guillaume encourages joining experienced groups, building confidence through collective action, and sharing personal stories to drive change.

**[00:14:23] Success stories in advocacy**

Guillaume provides a few examples and best practices to inspire listeners.

00:21 Overview of Breaking Barriers Program

01:14 Enable Scotland's Operational Pillars

04:15 Breaking Barriers: Program Details

05:14 University Experience and Challenges

09:17 Work Experience and Graduation

16:26 Employer Perspective: Scottish Power

25:06 Benefits and Impact of Breaking Barriers

30:35 Funding and Sustainability

33:49 Conclusion and Final Thoughts

[1:35:8] Who’s Elisabeth Lamers and how she started her work

[4:17:2] What comes after a child with disabilities finishes school?

[6:24:7] When Elisabeth joined UNAPEI

[10:09:0] How UNAPI works

[12:49:9] Self-advocacy in UNAPEI

[18:02:2] The survey

[31:41:3] UNAPEI’s purposes

[40:09:7] The achievements of UNAPEI

[1:30:0] The beginning of the story. A journey of commitment and passion

[8:35:0] Jyrki joins Inclusion Finland

[9:43:0] When Jyrki realises that getting services for children with disabilities can be hard

[13:01:00] Start of advocacy

[15:46:0] The efforts of Jyrki arrives to the politicians

[19:52:0] The work that’s left to do for people with disabilities

[27:34:0] The application of the UNCRPD

[49:31:0] Parents of children with disabilities

[54:07:0] The importance of Inclusion Europe and the other organisations

Conversation with former President of Inclusion Europe, Maureen Piggot.

Time stamps:

[00:00:42] Maureen’s youth and her first approach to disabilities 

[00:07:51] Maureen’s work with Mencap 

[00:13:13] Disability awareness in 1988 and today 

[00:16:23] The parents movement and the Disability Discrimination Act 

[00:36:41] The importance of self-advocacy and deinstitutionalisation 

[00:55:03] Maureen’s experience in Inclusion International 

Marie Devitt (TCPID Employment Pathways Coordinator) and Hugo MacNeill (TCPID Ambassador) gave an overview of their innovative TCPID programme and their partnerships with businesses. Sadbh Feehan (TCPID Graduate Intern) presented her own experiences, as a student in Trinity College Dublin and more recently as a graduate intern.

Timestamps

2:00 Introductions

3:17 Programme description

4:23 Internships, new programme and graduation

5:40 Business partner offers and financial support

9:20 Variety of programmes and value to partners students and society

11:35 Student work placement

12:10 Graduate internship programme

13:21 College team and mentor training

16:14 Developments into permanent roles

17:24 Feedback and success of the programme

20:51 Working with the Government of Ireland

22:32 Story of a student, graduate intern

28:29 First internship experience

41:04 If employees were reluctant to give young people on or they didn't know what type of vote to give a young person, what would you say to those employers?

44:01 Economic point of view, these are young people who are paying tax

More information: The road to employment: Trinity College's programme for people with intellectual disabilities - online presentation - Inclusion Europe (inclusion-europe.eu)

One of the many challenges that people with intellectual disabilities face is technology and more specifically surfing the web. This is why we invited, Inge Rutsaert from AnySurfer to talk about how to facilitate web navigation for people with intellectual disability.

Camilla Lindholm and Ulla Vanhatalo are professors and researchers at the University of Tampere and the University of Helsinki, respectively, and they wrote a book about easy languages in Europe.

Neil Crowther is a freelance consultant from the United Kingdom. He previously worked for the Disability Rights Commission and the Equality and Human Rights Commission in the UK.

In this episode we talked about:

[02:22] What is social care future?

[07:09] Pillars of social care

[11:37] NGOs have to help people understand, picture, and visualise the world we are advocating for

[16:43] Hopeful communication of social care future

[20:05] Using words that everybody understands

[22:37] Showing the results and [24:24] raising expectations

[26:09] How was the communication research conducted?

[38:13] How is social care relevant for people in need amidst the work on communication?

[40:38] We need the existing resources to be used much more effectively

[45:01] Disability rights when ageing

[55:58] Social care as relationship-centred support

[01:00:23] The visual story

Milan Šveřepa, director of Inclusion Europe interviewed Simo Vehmas and Reetta Mietola, authors of the book Narrowed Lives.

Harry Roche from Inclusion International interviews Soufiane El Amrani about the impact of Russian war on Ukraine and how is Inclusion Europe helping its members.

Katarina Ivanković Knežević is the director for Social Rights and Inclusion at the directorate general for employment, social affairs and inclusion of the European Commission.

In this episode we talk about:

[00:00:35] Katarina's work in Croatia on the National level

[00:02:23] EU policy help with inclusion at national level, what makes EU policies successful

[00:06:00] The European Pillar of Social Rights

[00:17:08] European Disability Strategy

[00:18:00] New Employment package for people with disabilities

[00:28:00] Example of policies working in Croatia

[00:38:13] Child Guarantee

[00:53:39] EU care strategy

[00:59:44] Support available and how is European Union helping Ukraine


Follow updates on twitter:

Julie Beadle-Brown and Jan Šiška talk about their book, The Development, Conceptualisation and Implementation of Quality in Disability Support Services.

On the 8 March, Milan Šveřepa spoke with Adam Zawisny from our member in Poland PSONI. They talked about Ukrainian refugees with disabilities, and how organisations in Poland are helping. 

Inclusion Europe organised a call with Raisa Kravchenko and Yulia Klepets form the VGO Coalition (All-Ukrainian NGO Coalition for Persons with Intellectual Disability, vgo.coalition@gmail.com). They shared with us and our members their plea for help and described the situation of families who are unable to leave Ukraine during the Russian attack.

01:30 - The war came to every Ukrainian home

2:00 - I have a seven year old son, whose group home (support) stopped, and now he's with me and it takes all my time to cope with his behavioural difficulties.

3:30 - We are exhausted

4:20 - The pills, the medicines will stop. And so we really badly need your help.

6:40 - I was standing three hours in line to get a 3000 is maybe a 60 Euro.

7:00 - We need to take families to the safer places.

8:30 - We would appreciate highly family to family support.

10:10 - We have a bank account in the bank, which failed, punished because the bank belongs to Russia and they are all under the sanctions

12:00 - This war is not against Ukraine solely, it is the war against civilisation

12:50 - If Ukraine becomes in these days, the members of the European union, it means that, the aggressor knows very clearly, that there is no way to Soviet Union.

13:40 - We would appreciate highly if you could call your countries, call your governments to support Ukraine in these two ways closed sky and joining European union on the simplified procedure

15:10 - There are families who live in the bathrooms because the military said that the bathrooms are the safest places in the flats.

15:40 - all bridges are locked and broken, and the leaving points are blocked. So, it is difficult to leave at all, taking into consideration that Kyiv is a city of 3 million people. It’s so difficult to leave.

16:20 - if you are a wheelchair person, you have a special sign on your car. And yesterday such a car was being shot. Somebody killed them, all because of the sign of the disability on the car.

18:40 - We have information war as well.

Soufiane El Amrani interviewed László Bercse, vice-president of Inclusion Europe, about what kind of Europe we want and how can we achieve it

Jan Savage, director of ENABLE Scotland talks about their work and impact on self-advocacy groups

Sebastian Foreman talks about the Campaign4Change and he reads a poem he wrote about living in isolation during the pandemic

This year, because of the pandemic situation, the Hear our Voices Conference was different.

Self-advocates from all over Europe got together in their own countries and organised several events to talk about how was it for them to go through the COVID-19 situation.

We interviewed Valerie Van Hees for Inclusion Europe Radio. Valerie is the coordinator for the Support Centre of Inclusive Higher Education in Flanders, Belgium. The support centre for higher education was founded in 2009 when Belgium ratified the UN convention for persons with disabilities.

Houston Vandergriff was born with Down Syndrome. While many doctors told his parents that he wouldn’t be able to achieve much in life, Houston, at age 23, has managed to chase his passion for photography, winn awards for his work, and inspire countless people along the way. Houston and his mother Katie joined us on Inclusion Europe Radio to talk about Houston’s journey.

Melanie Wimmer talks about her use of social media in her work as a self-advocate, her job at Atempo and difficulties faced in education and later in employment.

Myrto and Soufiane spoke about daily life
and employment for people with disabilities.

Myrto and Soufiane also talked about COVID-19
and the way COVID-19 has changed the employment of
people with intellectual disabilities.

Soufiane spoke about how important it is
for people with intellectual disabilities to have a job
and make their own money.