Newsletter of the Association for Self Advocacy
Issue 29
Topic of the issue: STAY the owner of your HOME
EDITORIAL Dear self-advocates, I hope you are well and safe in your homes. Corona virus epidemic was declared all over the world including here in Croatia. That is why citizens were recommended to stay at home to protect themselves and others. We, from the Association for Self-Advocacy also decided to stay responsible and to work from home. That is why I write this editorial from my room. Through several of our projects on properties of persons with intellectual disabilities and at our meetings we heard many stories on the violation of the right to property use. In this issue you can read what is salary, who has right to salary and pension. Also you can find out what is social benefit and real estate. We’ll introduced how we adjusted our activities to new circumstances. We find out how self-advocates spend their time at home during epidemic. I want us to win the fight as soon as possible with corona virus and to see you again at our meetings.
Editor Senada Halilčević Journalists Hrvoje Forner Snježana Kanjir Tomislav Ivašković Assistants Damjan Janjušević Ivana Poslon Hrvoj Kristina Klišanin Pictograms and symbols: © Widgit Software tel: +44 1223 425558, web: www.widgit.com Pictograms used for making the magazine front cover have been downloaded at: www.flaticon.com Authors of the pictograms: Tomas Knop, Dot on Paper and Freepik
Resources for the implementation of the program have been provided by the Ministry of Demography, Family, Youth and Social Policy
This doesn't mean that the Ministry of Demography, Family, Youth and Social Policy completely agrees with the content of this publication.
Be responsible and take care of yourself and your loved ones! 2
PROPERTY Your property is made up of things that belong only to you. Everything you earn, buy, receive or inherit makes up your property. For example, your property may be: money clothes house or apartment cell phone grave field or wood bicycle.
Your property is all money, real estate and things over which you have ownership. We need property to be equal and included members of our community. For example, when you have property, you can: live in your own apartment make money from renting your property use your money for buying the things you need go to places and socialize with others from the community plan and secure your future. 3
You have right to: know what is your property make decisions about managing your properties get support for decision making on property.
For managing your property it is very important to have legal capacity. Person with legal capacity has the right to manage his or her property independently. Decisions on properties of persons who are deprived of legal capacity are made by their guardians.
Some of the most important decisions on properties are management decisions. the salary you earn the pension that you receive or inherit the social benefit you are entitled benefit for working activities properties you own.
SALARY Most people make money by earning a salary.
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The salary is the money person receives each month for the work done. It is paid by the employer who employs the person.
Salary is personal property. Salary is important because it allows person to be independent and to manage his or her life. Person without a job or salary can make very few decisions about his or her life and is dependent on financial assistance of state or other people. PENSION Pension is money that a person receives after the end of his or her working life. The Pension Insurance Act defines who and when is entitled on right to pension. You can receive old-age pension after finishing working life, on the base of disability or you can inherit family pension.
SOCIAL BENEFITS Social benefit is the money that some persons have the right to receive from the state. The Social Welfare Act defines who is entitled to receive social benefits and services.
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PERFORMANCE OF WORK ACTIVITIES Many persons with intellectual disabilities are not actually employed but they perform work activities. Some of these persons get certain money for performing work activities. Money they received is called the fee for performing work activities. Many persons with disabilities call this fee salary. Support staff or their guardians often do not explain to person that fee for performing work activities is not the same as the salary.
REAL ESTATE An important part of the property is real estate. Real estate is property that has higher financial value. Real estate is land and buildings. For example land can be: field wood agricultural fee parcel on which you can build a house. For example building can be: apartment family house 6
 business space  grave site. Most of people come to real estate by buying, inherit or receive it as a gift. Persons with intellectual disabilities can be real estate owners. Most often real estate is inherited after the death of the parents or close family members.
SUPPORT Many persons with intellectual disabilities need support of another person to manage the money. Unfortunately we heard from self-advocates that they have very little or no support for money management. For example, people need help to raise salaries from their bank account. Many self-advocates say that the people who support them or guardians raise salaries without them. Self-advocates are often disabled to spend their salary as they wish. Guardians, members of family or support persons often decides on the spending of the salary. WHAT WE LEARNED FROM SELF-ADVOCATES A few years ago, we asked self-advocates from Croatia if they know what their property is. 7
A small number of self-advocates knew to list down their properties. Mostly it was things that used daily such as clothing, footwear or a cell phone. We asked them if they owned houses, apartments or land. Most self-advocates did not know the answer to this question. With the help of their assistants, we discovered that a lot of self-advocates has some real estate that they know nothing about or cannot manage. We wondered why that was so? We found out that most persons with intellectual disabilities are not informed what it means to own a house or land. From self-advocates we heard that in most cases no one talk with persons with intellectual disabilities about money, real estate or other property.
Another reason why people with intellectual disabilities not managing their property is because many of them are deprived of legal capacity Many persons deprived of legal capacity cannot manage their properties of a greater value. Managing properties, for example, means: • buy • sell • or rent your house or land. 8
Instead of a person deprived of legal capacity the property is often managed by a guardian. The guardian is obliged to talk to person and accept her opinion and wishes related to property management. Unfortunately from the stories of self-advocates we learned that in most cases guardians do not talk to the person about this topic. We learned that self-advocates are often deceived or they are left without their houses or land without their knowledge.
CONCLUSION People with intellectual disabilities are often victims of economic violence. Their property rights are being violated and exploited. Economic violence is most often perpetrated by close people which should provide support to self-advocates.
For example: family members guardians social workers people they trust people who support them.
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It is much harder for people with intellectual disabilities protect themselves from violence because they often: • don’t have legal capacity • don’t have the necessary knowledge and information • don’t have enough support. The legal position of persons with intellectual disabilities needs to be strengthened. This means that laws should ensure the right to: • legal capacity • supported decision making It is also important to introduce stricter monitoring and independent control of work the person, institution and organization providing the support persons with intellectual disabilities. Persons with intellectual disabilities need to be empowered to talk about the economic violence they have experienced. PROPERTY AND PROPERTY RIGHTS the key to getting out of poverty and social inclusion Property and property rights are very important for every person. People without property live in poverty and are very often excluded from society. People who are excluded from society do not have the opportunity to: • socialize with other people • go out for coffee or a walk with others • go to an exhibition or concert 10
• enrol in a course and thus increase your knowledge and skills Poverty and social exclusion are strongly connected. Poor people usually don't have enough money or property to insure them: a decent house or apartment enough clothes and shoes conditions for maintaining personal hygiene Sometimes people are so poor that they even can't even provide enough food. This leads them to social isolation. And when people are in a state of social isolation then it is much harder for them to get out of poverty. This is sometimes called a vicious circle poverty and social exclusion. That is why it is important to allow everyone to come to some property in a legal way. It is also very important that the state has fair laws which will protect the property rights of every citizen. This is especially important for persons with intellectual disabilities. We, in the Association for Self-Advocacy found out that many persons with intellectual disabilities live in poverty and find it very difficult to access property. Most self-advocates are unemployed and their only properties are social benefits or a family pension.
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Numerous self-advocates complain that they cannot make almost any decision on their property. Therefore the Association for Self-Advocacy will continue to work on the topic of property rights. We will fight to change all laws which do not provide quality protection of property rights of persons with intellectual disabilities. We will fight for the right to quality support which will help self-advocates in disposal of their property and will not decide for them. Without better protection of property right most people with intellectual disabilities will continue to remain doomed to hard life in poverty and social exclusion.
news ACTIVITIES OF THE ASSOCIATION FOR SELF-ADVOCACY It March a number of measures were taken in Croatia to prevent the spread of infection with new corona virus. Since then, regular self-advocacy meetings and computer workshops are not held in the Association for Self-Advocacy. Every day the National headquarters for Civil Protection provided lots of different information on TV, radio and Internet. Most people felt fear and helplessness due to the new situation.
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From phone conversations with self-advocates, we learned that it is even harder for them because information are not easy to understand. Therefore self-advocates felt insecure and afraid. Self-advocates are citizens of the Republic of Croatia and are entitled to accessible information. That is why we decided to publish news on corona virus every day in an easy to read form. We published news in our Facebook page on Twitter and Instagram. We first made an easy-to-understand leaflet in which we explained what a corona virus is, how it spreads, what are the symptoms of the infection and how to protect yourself from viruses. Inclusion Europe included this leaflet on its website where corona virus information was published in 22 different languages. Every day we monitored the situation and the introduction of new measures. Than we adjust these information in easy to read form. Our self-advocate Senada also filmed videos of how she spends time in isolation. In addition, we shared video exercises of the Taekwondo Club ÄŒigra. The Association for Self-Advocacy is the only one in Croatia that published such information. We informed the Ministry of Demography, family, youth and social policy about this.
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Our goal was to provide easy to read information to as many persons with intellectual disabilities in Croatia as possible. The Ministry helped us and informed about our work service providers and organizations of persons with disabilities in Croatia. We would like to take this opportunity to thank the Ministry of Demography, family, youth and social policy. Webinar Inclusion International At the end of April, Senada Halilčević participated at the Inclusion International webinar. Webinar is an online meeting where people participate using their computers. Inclusion International is international a network that brings together persons with intellectual disabilities and their families to advocate for human rights persons with intellectual disabilities around the world. The aim of the webinar was to share information and knowledge used by self-advocacy organizations in response to the corona virus situation. At webinar participated self-advocates from:
United States of America Hong Kong Canada Kenya Belgium and Croatia.
Self-advocates said the biggest problem for their members is the lack of information, isolation and fear. 14
That is why all organizations wrote easy to read information about the corona virus and how to protect from it. European umbrella organization, Inclusion Europe published easy to read information on corona virus in 22 different languages. Some organizations tried to organize online meetings so that self-advocates have a sense of connection and security. In Hong Kong, the state did not ensure enough protective equipment for self-advocates so their organization held a protest. In the end, they bought protective masks for their members with their own money. Due to the lack of clear measures and protective equipment in Canada, the corona virus entered a group home of persons with intellectual disabilities. Out of 42 people, 37 people were positive to corona virus. That is why many self-advocacy groups demanded better protection of persons with intellectual disabilities living in group homes and other forms of accommodation. The Canadian government listened to them. It brought much better measures and ordered that support persons must wear protective equipment. Many self-advocates have expressed concern due to the reduced number of support persons. For some, support has been reduced due to corona virus measures, and some self-advocates said support persons quit their job out of fear and left them all alone.
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Another problem is that a lot of self-advocates does not have Internet or cell phone. That is the reason they cannot connect with others which is most important at the moment. Self-advocates who have access to the Internet often don’t know how to use it or do not have support for using the Internet. Many people around the world are under measures of isolation at this moment. Real consequences of this will be seen only after some time. Senada said that she is afraid that the economic crisis will affect the reduction of the rights of persons with intellectual disabilities. The others agreed with her. They concluded this type of meeting should be held in the future so self-advocates could join forces to respond to new challenges in the future. Social networks You can still follow the activities of the Association for Self-Advocacy on our website www.samozastupanje.hr and Facebook page. We also opened an account on Twitter. Twitter is a network for spreading short news and messages about a topic marked with #. Find us on Twitter under the name @UZS_ZG. We publish on the topics #self-advocacy # self-determination and #easytoreadinformation and everything else which we think is important for self-advocates. You can also find us on our new Instagram page. Instagram is a social network that is used to publish photos and videos. 16
Find us under name uzs_zg and follow us. There you can write your comments and questions. While the corona virus pandemic lasted, we have kept in touch with self-advocates through social networks. We also did a few phone interviews with self-advocates. Read their answers below.
Interview with self-advocate Fadil Špuren What was the hardest thing for you in this corona virus crisis? The hardest part for me was when I found out that people from other apartments were not allowed to go out for a walk and I went. Are you afraid of corona virus? I’m not afraid because I always wear a mask and keep the 2 meter distance. Were you scared of an earthquake? I wasn't really scared. It’s already 3rd earthquakes I’ve experienced. Before earthquake happened I had breakfast. When there was an earthquake. I went outside the building like everyone else. What do you do during the day? I cook, watch TV, I read books, I hang out with neighbours in the park but at a distance. What do you miss? I miss self-advocacy meetings, my guardian, I miss the going to library and to Trešnjevka square. 17
What are you most looking forward to when this situation calms down? I look forward to being able to work again and go to places I went before.
Interview with self-advocate Biserka Sambol How do you spend your time in the isolation? I cook, I go to walk but I keep the distance. I pray a lot at noon and in the evening. I also celebrated my birthday. At first, this situation was hard for me, but I somehow got used to it. I talk to family and friends on a video call and on telephone. I follow the daily reports on corona virus. Did you learn some new things during this time? Yes. One of these is the company of my roommates in prayer, we pray together. Now I spending more time with the people I love. I put everything in God's hands. I would like to spend more time with loved ones because of this busy way of life and obligations we do not have time. Interview with self-advocate SnjeĹžana Kanjir How do you spend your days at home during corona virus? Well, I like to take walk in my neighbourhood, go for a massage and to my hairdresser. I always wear a mask and gloves when I go out. I help my mom to clean the apartment. 18
I also visited my friend Nada. Were you scared of an earthquake? I was scared a little bit, I ran down the stairs. The wall in the apartment cracked. I’m a little bored and can’t wait to go to work. Sometimes I talk to my friends over the phone and see my brother when he visits me. Do you have message for self-advocates? My message to self-advocate is to be careful so we can start to work as soon as possible. Interview with self-advocate Božidar Kobasić What was the hardest thing for you in this corona virus crisis? I heard about corona virus in March. At first I didn’t know how dangerous it was. In those first days I went on my own for a little walk. Only now I see how dangerous it was. When I came home support person measured my body temperature. My temperature was normal and I was lucky I wasn’t infected. Yet, I stayed home for two weeks and didn’t go out. After two weeks I started to go out at first just in small garden behind our house. Now, I can’t wait for this corona virus to end so I can go out of my house independently. I learned I must be very careful about corona virus.
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How was it for you when the earthquake happened in Zagreb? When first earthquake happened I was still asleep and I didn’t feel it, but the second one I felt. Everything started to shake, the walls cracked and the picture fell from the wall. Were you afraid? Yes I was, my partner and I went out of the apartment. We didn’t know what could happen next. Do you have message for our readers? Everyone should be very careful and protect themselves from corona virus. Be informed. If earthquake hits again everyone should know what to do and how to act. Interview with self-advocate Nera Bajzec What was the hardest thing for you in this corona virus crisis? Nothing. I’m not afraid of the virus. Is it hard for you to stay at home? No, I love it! Are you afraid? I’m not afraid of anything. At first I was scared of earthquake but after I was not afraid. What are you doing in the apartment during the day? I clean, I cook, I watch TV and listen to the news. I also have a cat called Luna. Do you leave the apartment sometimes? I just go to store to buy what I need and go home straight away. I don’t go to store every day.
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What are you looking forward the most to when this situation calms down? I’m looking the most forward to go to walk to Marksimir Park and in front of my building. Do you miss going to your job? I don’t miss my job at all.
Interview with self-advocate Romana Posavec What was the hardest thing for you in this corona virus crisis? When everything started with the corona virus in March I stopped go to my job. I’m at home all the time. I'm not afraid of corona virus. The earthquake scared me the most. What do you do during the day? Mostly I clean the house and cook. I’m looking forward the most to afternoons because I ride bike with my husband in our neighbourhood. Are you going to the store? No, I’m not going. I have a great daughter. She purchase and brings everything I need from the store. My husband and I make shopping list for her and let her over phone. She brings us everything. What are you looking forward the most to when this situation calms down? I hardly wait to go to my work again and to hang around with other people. It’s boring to stay at home all day.
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You can send your stories and questions at:
Međimurska 19, 3.kat 10 000 Zagreb Telefon: 01 553 05 56, Fax: 01 553 05 56 E-mail: kontakt@samozastupanje.hr Visit our web page: www.samozastupanje.hr or Facebook page.
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