Easy-to-read and understand with Soufiane El Amrani —
8 November 2022

Legal Action with Helen Portal and Cinzia Agoni from GAMP, Belgium — 15 November 2022

 

Helen Portal is the policy and advocacy officer at Inclusion Europe. Cinzia  Agoni is the spokesperson of GAMP, an NGO that fights against the lack of services and solutions for people with complex needs in Belgium.

Helen gave an overview on how to file a complaint and, Cinzia followed by sharing GAMP’s complaint.

What is a collective complaint?

A collective complaint is based on the European Charter for Social Rights which is followed by the European Committee for Social Rights.

The Committee manages the compliance by two different ways:

• collective complaint
• reports of implementation by state parties

The collective complaint is important for NGOs because it gives them an important role to fight against violations of social rights.

With a collective complaint, countries can be condemned by the European Committee for Social Rights for not implementing the Charter.

The European Charter for Social Rights is complementary to the Convention of Human Rights because NGOs can make a complaint.

Conditions to do a complaint

The complaint has to be made in a country that has accepted and signed the Charter. The Charter is done at the European level via the Council of Europe (47 countries).

The complaint needs to be made by an international NGO (special status).

With the special status of international NGO, the complaint can be made without all the domestic remedies to be exhausted (it is not the last resource to file a complaint) and the international NGO doesn’t need to be the victim of these violations.

This process of filing a legal case to improve Human Rights is called strategic litigation.

There is a big situation of name and shame that is functioning because the more we say that countries have not signed it [ Charter]  and there’s no possibility for complaints, the more countries will want to sign it. — Helen Portal, IE

Once the complaint is accepted 

The European Committee for Social Rights will judge the merits (content) of the complaint.

It will ask for the state to make a submission and then it will ask the organisation/NGO if they want to reply to the state’s submission.

There can have a hearing but it is rare.

The European Committee for Social Rights will give a decision of whether the state violated or not the charter. If yes, the state can be condemned.

Results

The European Committee for Social Rights can give immediate indications so that the state takes quick measures to end the violations.

The state has to give regular follow ups to the Committee on how they are ending the violations.

There is frustration in a person’s lifetime that it is not easy to see the change. But there is progress. Let’s say optimistic! — Helen Portal, IE

GAMP’s complaint

GAMP sued the Belgium state for violations of the European Charter for Social Rights in 2013.

The complaint was about the lack of solutions and services for people with complexe needs in Belgian regions and communities.

The complaint resulted in the resolution of the European Minister Council and few day cares and residential centres in Brussels and Wallonia were created.

In Flanders, subsidies were given to support services and individual budget were allocated to people with complex needs.

Currently after a few years of progress, the situation is unfortunately stagnating and we have to keep to take up the legal fight. But we can conclude that this kind of action works and puts pressure on political powers. — Cinzia Agoni, GAMP

Family support with “Help the Life” Association, Albania —
22 November 2022

 

Lediana Xhakollari and Enron Seiti of Help the Life Association Albania joined us for the fourth Tuesday Tutorial at Two to talk about how they support the families of persons with intellectual disabilities. 

Why it is important to support families ? (Lediana) 

The life of a child with a disability is linked to the life of others in the family and the other way around. Because of this link, if family members are more stressed or sad this will also have a negative effect on the life of a child with a disability. The other way around is true as well if family members are happier this can improve the life of the child. 

Families face different challenges including: 

• Strong emotions when receiving the diagnosis 
• Lack of awareness about the disability 
• Stigma 
• Lack of personal time 
• High stress 
• Risk of long-term caregiving stress 

Giving adequate support to families can reduce these challenges making families feel less isolated, improving the family’s quality of life and increasing the resilience of the families. It also helps the children to achieve their full potential. 

Help the Life Association has two main approaches towards supporting families: 

1. Parent-professional partnership: creating trust between parents and professionals 
2. Empowering parents through parent training and coaching: providing parents with the support they need to care for their child. 

How Help the Life Association supports families through different types of services depending on the age of the child? (Enron) 

During Early Childhood Intervention (0-6 years old): 

• Active participation of parents in creating and implementing treatment objectives 
• Provide a program for the parents to be implemented at home 
• Have regular meetings with the family, including: family therapy, parents group meetings, and trainings. 

When the child is between 5 and 21 years old, Help the Life Association offers daily center of services including: 

• Sibling self-help groups where siblings can share their experiences and get psychological support among other things 
• Parental support with regular meetings with the professional team and family group meetings with other parents. 

For people 21 years or older, Help the Life Association has an independent living program which includes: 

• Regular meetings with parents to ease the adjustment from living at home to living independently. 
• And ‘stay over’ nights where the parents can visit their child and can see for themselves how their child is doing without them. 

Promoting active participation with Inclusion Ireland —
6 December 2022

 

Guillaume Jacquinot and Paul Alford from Inclusion Ireland discussed their work on promoting active participation. 

What is Inclusion Ireland?

Paul talked about the history of Inclusion Ireland. 

Inclusion Ireland advocates for the rights of people with intellectual disabilities in Ireland. 

Our vision: an inclusive Ireland where people with an intellectual disability are supported to live and participate as an equal member within the community. — Paul Alford, II 

What is Paul’s role in Inclusion Ireland?

Paul explained his work on making texts from Inclusion Ireland, the government and other organisations in easy-to-read. He he has the final say on them. 

He also runs meetings and talks with staff on what support he and others might need. 

Inclusion Ireland has a self-advocacy group and it has 4 people with intellectual disabilities on its board. 

This way people with intellectual disabilities have a direct say in what Inclusion Ireland works on. 

But Paul said: 

I think that 4 people is not enough. There should be at least 8 to 10 people on it. It would be a good thing, if everyone followed our steps and have people [with intellectual disabilities] on their board or their committees 

The “Respect our Rights” report

Guillaume shared about a report that Inclusion Ireland has written. 

‘The respect our rights’ report is about what people with intellectual disabilities think of inclusion in Ireland. 

The report is written to give to the United Nations Committee of Rights of People with Disabilities (UN CRPD). 

To make the report, Inclusion Ireland created a steering group of 6 people with intellectual disabilities. These 6 people were trained about the UN CRPD and important articles in it. 

They chose which articles were important to them and their decisions shaped the report. 

For the report, Inclusion Ireland talked with 200 people with intellectual disabilities and 20 family members. They were asked about the topics chosen by the steering group. 

They were asked about: 

• What are the barriers for people with disabilities in Ireland? 
• What should be changed to make things better for people with disabilities? 

 The report focused on 8 important topics: 

• Awareness of disability 
• Accessibility 
• Inclusive education 
• Day services 
• Employment and work 
• Independent living 
• Personal choices and relationships 
• Speaking up for yourself 

 Easy-to-read 

Inclusion Ireland now uses easy-to-read texts and videos, to bring people with intellectual disabilities to participate in the research. 

 EPSA

Soufiane El Amrani is the easy-to-read editor at Inclusion Europe. 

He talked about self-advocacy groups. 

All people with intellectual disabilities have the right to start their own self-advocacy group or to join an existing self-advocacy group. Self-advocacy groups talk about thing that are important to people with intellectual disabilities — Soufiane El Amrani, IE 

Soufiane explained what EPSA is. 

The European Platform of Self-Advocates brings people with intellectual disabilities together from all over Europe. EPSA chooses 3 board members of Inclusion Europe.EPSA also gives Inclusion Europe ideas about what work they should do — Soufiane El Amrani, IE  

 To create inclusive participation, it needs: 

• Easy to understand language 
• Short sessions 
• Breaks 
• People with intellectual disabilities

This makes sure everyone can benefit and contribute to the meetings.  

Paul ended the presentation with an important message: 

Nothing about us without us! 

Legal capacity with Som Fundació — 20 December 2022

 

Josep Tresserras from Som Fundació talked about the legal capacity support system that they have created, called the Som Futur program. 

What is Som Futur program?

The Som Futur program is aimed at people with intellectual disabilities and their families who have legally decided that Som Fundació will be the entity that will provide support when the person needs it. 

What does the program provide?

The program provides security and confidence for the future. When a support person such as a family member gets ill or passes away, the program can take over the support for the person with intellectual disability and make sure that he/she still gets the support they need. 

The Som Futur program gives support for legal capacity in decision-making through “Attention Focused on the Person”-method aimed at strengthening the person’s capacities and self-determination. For this, they have a independent living program and cognitive accessibility program. 

What are the two sub-programs?

The independent living program provides the necessary support so that the IDPs we support can live independently and avoid having to do so in an institution. They provide care adapted to the person, help at home and social support. 

The cognitive accessibility program aims to improve independent living, increasing the general growth of the person, the ability to control and make personal decisions about how to live and how to carry out the activities of daily life. 

The balance sheet

One of the tools Som Fundació developed is the adaptation of the balance sheet, income and expenses in easy-to-read so that the people and their families registered to the program know how much they spend, earn and save.

Personal Assistance with ENABLE Scotland — 10 January 2023

 

Katie McVay is the Director of Strategy and Development at ENABLE Scotland. She talked about ENABLE’s Personal Assistant model.

What is ENABLE Scotland ?

ENABLE is a group of three charities, ENABLE Scotland, ENABLE Works and ENABLE Cares. They employ 2,500 people and have a turnover of 60 million pounds (68 million euros).

ENABLE Scotland is the core of what ENABLE is today.

It was founded 70 years ago by 5 families who fought for their children with intellectual disabilities to have equal opportunities in care in their local community. Having an equal society is ENABLE’s core value.

ENABLE Works is the employment pillar and ENABLE Cares are the health and social pillars.

What is ENABLE’s PA model ?

It dates back to 2014 when the Self-Directed Support Act was created in Scotland.

ENABLE starting thinking about how to implement the act in the organisation.

ENABLE has 4 components to their PA model: Service Designer, Support Strategies, Bespoke Team of Personal Assistants and Individual Service Fund (ISF).

What are the 4 components of the PA model ?

There is a service designer, meaning that people who need support tells what they want to do with their lives and ENABLE will help them achieve whatever they want to do.

There are support strategies, meaning that ENABLE will come up ways to help people who need support to achieve what they want. It also provides specific ways on how to communicate and act with each person (triggers, anxiety, uncomfortable, etc).

There is an individual service fund, meaning that every people who need support have their own dedicated budget. The budget will help see the expenditures of the services provided and determine the outcomes of what they want to achieve.

There is the bespoke team of personal assistants, meaning that people who need support will be assisted by assistants that they will choose in terms of personalities and interests. The assistants have to pass a recruitment process and are employed to an individual who needs support.

What is the goal of the PA model ?

The goal is for people with intellectual disabilities to have control in their lives in terms of choices, money, independence, work and so on.

It enables families of people with intellectual disabilities to have access to services and support without having to go through the challenges of bureaucracy, finding the right assistant or ending up in an institution.

The PA model is :

• consistent (feasible no matter where you live),
• fair (available no matter the education level and the social capital),
• hight quality (88% mark by the Care Inspectorate compared to a national average of 63%)
• for everyone.

Social media strategy with Josipa Friščić — 17 January 2023

COMING SOON

UN CRPD with Inclusie Nederland — 7 March 2023

 

This Tuesday Tutorial at Two on March 7 was about how to apply the UN CRPD in practice locally.

Jeroen Veltheer and Alex de Vos from Inclusie Nederland joined us to discuss their work on UN Ambassadors and their ‘Bubbling Inclusion’ project.

The UN Ambassadors project

Inclusie Nederland realised that most of the topics discussed in the UN CRPD are topics that are decided on locally in the Netherlands. Due to this, there is a need of local advocates for the implementation of the UN CRPD.

Inclusie Nederland started the UN Ambassadors. This is a group of advocates that fight for the implementation of the UN CRPD in any way that they can. They chose the name UN Ambassadors as it helps them to be taken seriously.

Most UN Ambassadors are self-advocates, around 95%. Others are family members, policy makers, researchers, or local politicians.

There are more than 500 UN Ambassadors.

The UN Ambassador project helps to build capacity. It is a movement that works from the bottom-up and it turns vulnerability into strength. It also helps increasing the self-esteem of self-advocates.

The UN Ambassadors make a difference by:

• ‘Claiming’ your involvement (obligation article 4-3 of the UNCRPD)
• Not accepting unequal treatment or discrimination
• Advocating for inclusion
• Seeing accessibility from all angles
• Insisting everyone should have control over their own life

The UN Ambassadors help locally by:

• Checking if existing buildings or events are accessible.
• Helping design future buildings or events to be accessible.
• Informing local governments of unequal treatment of people with disabilities and how to improve.

The ‘bubbling inclusion’ project

The UN Ambassadors come together once a month during the ‘bubbling inclusion’. It is based on the Dutch tradition of going for after-work drinks on Friday afternoon. Instead of drinking with your colleagues in a local bar, it is online with the UN Ambassador network.

They use the zoom platform to organise these monthly sessions and each session is build around an important societal theme connected to the UNCRPD.

Every month around 40 advocates join this event.

Back in 2020, the idea first was to get together in person, but the Covid-19 pandemic made this impossible. So instead they organised it online with great success.

The format is:

• Welcome and starting up – 10 min
• Introduction – 5 min
• Guest speaker gives a short presentation on the theme – 30 min
• Discussion in small group (break out rooms) with moderator – 30 min
• Everyone comes back together, moderatos summarise discussions of their small group – 15 min
• Announcements – 15 min
• Bubbling (informal discussion when everyone takes a drink from their own fridge) – until the end

Examples of previous topics:

• Accessible public transportation
• Diversity and intersectionality
• Political active & disability

The online meetings are for many more inclusive as it does not require any travelling. There are also parallel writing interpreters.