The Scottish Human Rights Commission (SHRC) and the Equality and Human Rights Commission (EHRC) are hosting a series of four free online seminars. The aim of these seminars is to relate the Disability Convention to what people with disabilities in Scotland have said are the key issues that they face. To date three seminars have taken place; “Rights in a Recession”, “Getting Justice” and the third one on “ Independent Living”.

The third one on ‘Independent Living’ was presented by Independent Living Scotland and the SHRC. This seminar focussed on what the Convention says about Independent Living. It then moved on to give an overview of Independent Living Scotland and it’s history. Finally, it looked at Independent Living and human rights and how to make these rights a reality.

Recording of the seminar of 13th February 2012 about Independent Living, with Pam Duncan from the Independent Living in Scotland Project

The last seminar in the series is on the 12^th March 2012, focusing ‘Children and Young people’ and will be streamed live between 12-1.00pm GMT. lt will also be available online after the seminar finishes.

All these seminars are still available online for free along with the presentation slides used in the seminars.

Links:

http://www.scottishhumanrights.com/ourwork/crpd/seminar

www.ilis.co.uk

Follow them on twitter:

@Scothumanrights

@EHRC

     @ilisproject

Vanessa Scanlon

On the 9^th February 2012 ENIL and the European parliamentary group GUE/NGL (European United Left/Nordic Green Left) held a hearing in the European Parliament. The purpose of this hearing was to show from a number of perspectives how people with disabilities are being negatively affected by the EU current austerity policies. This is the first time that ENIL has held a hearing in the European Parliament. ENIL presented its ‘Proposal for a European Parliament Resolution’ on the effect of the cuts. The hearing was received positively in the European Parliament and three Members of the Parliament participated in the hearing, Kartika Liotard, MEP, Netherlands, Cecilia Wikstrom, MEP, Sweden and Paul Murphy, MEP, Ireland. The hearing was streamed live and there was up to two hundred people watching online throughout the hearing, with approximately eighty people in the Parliament itself.

The hearing began on a optimistic tone with MEP Cecilia Wikstrom’s opening address in which she made it clear that the although the financial climate is affecting every faction of society that hope is necessary at this time.

Panel 1: Understanding the impact of austerity measures on persons with disabilities

The hearing was in two parts with two different panels. Understanding the impact of the austerity measures on persons with disabilities was the focus of the first panel. Throughout this first panel, four themes emerged; (a) disability and policy, (b) de-institutionalisation, (c) disability and the media and (d) individual accounts that were shared.

(a)   Disability and Policy: Since the financial crisis there has been an impact on the way in which policy has been implemented, interpreted and devised. One of the most important issues raised by Prof. Alan Roulstone (Expert on global and European disability policy)  was that short term cuts often ignore the long term benefits. These policy decisions do not just have economical effect, but social and political effects. John Evans OBE ( Advisory Board member of ENIL)  noted that throughout this financial crisis, it is the welfare systems that have been hit hardest and further reductions would increase poverty. He pointed out that many of these cuts have been made without any dialogue between governments and those whose benefits they are cutting. John Evans further argued, Independent Living has positively changed people’s lives, however some people are now struggling to survive.

(b)  De-institutionalisation: Prof. Alan Roulstone pointed out that short term cuts could allow institutions to grow, which would reverse the positive trend towards de-institutionalisation. Kapka Panayotova (Director of CIL, Sofia and Chairwoman of ENIL) spoke about Bulgaria and the reality that despite EU funding, thousands of people still reside in institutions. She spoke about the issue of re-institutionalisation, with new institutions replacing the old ones just being named differently, for example small group homes or family –type residence facilities.

(c)   Disability and the media: One issue that has become prevalent since the beginning of the financial crisis has been the coverage of disability in the media.  John Evans pointed out that the portrayal by the media that there are too many people claiming benefits was an injustice to people’s dignity and respect.  While the media may portray this image, the reality is far from this with Evans pointing out that ENIL receive complaints from people struggling to maintain their rights and quality of life. Prof. Alan Roulstone, echoed this sentiment and noted that it is only in the last four to five years that disability issues have received this type of negative media coverage.  .

(d)  Individual Accounts: One of the most striking points of the hearing was the impact that the austerity measures are having on the everyday lives of people with disabilities from both countries with a long tradition in progressive disability policies such as the UK and newer member states such as Bulgaria. Michael McCabe (Chairperson of Centre of Independent Living, Carmichael House, Dublin)  from Ireland gave clear examples of how the lives of Irish CIL members were being affected  “by the stroke of a pen” by the Irish Government cutting their benefits, while the Irish government continue to spend a colossal sum of money to bail out the banks in Ireland.

Panel 2 : Addressing the threat of cuts to the rights of persons with disabilities at the European level

The second panel addressed the threat of cuts to the rights of people with disabilities at the European level. It identified actions that can be taken by the European Commission and the European Parliament to address the current situation and ensure that the rights of people with disabilities in the EU are upheld. Simona Giarrantano ( Policy Officer at the European Disability Forum) spoke of how the cuts in one area, such as local authority funding can have knock on effects to other social services. She reiterated that these cuts have been taken with little consolation between government and those in receipt of the funds, which is in violation of the United Nations Human Rights Convention. She pointed out that on a societal level it necessary to invest in people and in quality services for Europe after the financial crisis.

Sian Jones ( Policy Officer at the European Anti-Poverty Network)  focussed on a strategic approach to inequality, suggesting mainstreaming disability as it is so closely linked to poverty, that it could receive funding from the European Structural Funds. Peter Lambreghts (ENIL and Onafhankelijk leven)   was clear in his opening message that we need to take up this fight for our rights as we need ENIL now more than ever. He spoke of the need to change the way in which political leaders think about disability. He addressed how to move forward and that ENIL is open to suggestions on how best to do this. One suggestion of note, being the creation of an ad-hoc working group.  He made it clear that promoting social inclusion and reducing poverty should be at the heart of the Parliament’s agenda.

Moderator of the second panel MEP, Paul Murphy, pointed out that cutting funding is a political choice and if different choices are not made then Europe will be further away from the targets laid down by the European Commission in Europe 2020, than we are today.

Paul Murphy, MEP, Ireland, Peter Lambreghts, ENIL and Onafhankelijk Leven, Simona Giarratano, Policy Officer, European Disability Forum, Sian Jones, Policy Officer, European Anti-Poverty Network.

End Result

The hearing in the European Parliament on the 9^th February was significant for many reasons. Above everything else, it raised awareness of the issues that we, people with disabilities are facing in the current financial climate. Ultimately, there was one unqualified message and that was that   the austerity measures are negatively impacting on our lives on a number of levels. These issues and how they are addressed are at the heart of the very fabric of the European Union. The second part of the hearing made significant suggestions on what actions can be taken to ensure our rights as members of the European Union are upheld. The hearing ended on the same positive note that it had begun and with a call to action from Jamie Bolling, our Executive Director of ENIL   to fight for our rights.

Coming Up!In the next issue of the Newsletter two Irish MEP’s Mairead McGuinness and Paul Murphy discuss disability issues in relation to the current austerity measures.

Gary Lee, Law and Policy Officer, CIL, Carmichael House, Dublin, Sinead McCabe, Michael McCabe, Chairperson, CIL, Carmichael House, Dublin.

Links

Michael McCabe’s Full Address to the European Parliament:

http://www.dublincil.org/micheal-mccabe-speech-feb-9th-2012.asp

GUE/NGL Flickr: Photos of the hearing in the European Parliament

http://www.flickr.com/photos/guengl/6851124965/in/set-7215762925651354

Videos from the hearing

Part 1 http://bambuser.com/v/2354346

Part 2 http://bambuser.com/v/2354621

Interview with Jamie Bolling and Peter Lambreghts.

February 1, 2012 marks the beginning of the Social platform on innovative social services or the INNOSERV Project  funded under the European Commission’s Seventh framework programme.  The Project is a unique opportunity for the identification and acknowledgement of innovative services that generate postive outcomes from a service user perspective.  ENIL has found it important to make our voices heard in order for this project to succeed and make a real difference for Independent Living.  We hope you will cooperate with us in this endeavor.

The Project is an attempt to survey the potential for innovative services in the health, education and welfare sectors. This by relying on a combination of academic/policy input, civil society perspectives and empirical knowledge.

Ultimately, information on selected innovative services will be diseminated broadly in easy to read formats that allows communication accross cultural and geographic boundaries, along with evaluation of policy making trends.  Together, practical examples and an overview of academic research will provide substantial input in the EU 2020 strategy.

Partners in implementation  of the project include reputable academic institutions and CSO networks in Europe: Heidelberg University, University of Applied Sciences Hamburg, University of Roskilde, Diakonhjemmet University College, Oslo, Budapest Institute, Instituto per la Ricerca Sociale, University of Southampton, Universite Paris, Pantheon-Sorbonne, European Association of Service Providers for Persons with Disabilities (EASPD), Solidar, and ENIL.

ENIL has through this project a pending task that requires support from the network:

The ENIL network must identify typical innovative practices from the fields of health, education and welfare. ENIL needs to provide at least 16 examples.  So If you have innovative service examples that you would like to share, please just contact us as soon as possible and no later than February 24, 2012, COB.

All questions regarding this initiative should be directed  to  Sanja Nikolin the ENIL researcher for the project at sanja.nikolin@multiservis.rs and please copy in Jamie Bolling  jamie.bolling@enil.eu the director of ENIL.

Thanks!

Jonas Franksson, 35, actor, journalist and debater, lives in Stockholm, Sweden, with wife and two kids. He works at the assistance cooperative STIL with advocacy and is also member of the board in STIL.

1998-2003 Jonas was director of the board in the Swedish Federation of Young Disabled. 2004 he won the Swedish Journalist Award as the renewal of the year for his participation in the TV-program CP-magasinet (“the Cerebral Palsy Show” in translation). He has, among a lot of other things, been involved in initiating the Accessibility March in Sweden.

• What is your personal experience of disability?
My disability is a natural part of me and has shaped me just as my background, my family and so on have. It has shaped my values and my approach to the extent that I often say that I am grateful that I have been blessed with a disability.

• How did you discover the Independent Living movement?
I live in Sweden, where the Independent Living movement became known in connection with personal assistance legislation nearly twenty years ago. But I was not involved until three years ago when the threats to the legislation became quite serious.

• Is there an area of Independent Living that you are especially interested in?
Since threats to personal assistance are so large in Sweden, I have to prioritise this issue.

• Who has influenced you the most, and how?
I’m most inspired by the black civil rights movement in the US and the ANC in South Africa and their struggle for equal rights together with a strong pride in who they were.

• Of what personal achievement are you most proud?
I’m proud of a lot, which can be good to remind yourself when it goes backwards. But the thing that has made the biggest impression is probably the TV series that I made. It was broadcast on national TV in Sweden in Spring 2004 and helped open the public’s eyes to our questions.

• Do you have a favourite saying or proverb?
It varies from month to month. Right now I am going through a period of much political activism and the old advertisement slogan “Just do it” fits pretty good.

• What motivates you to get up in the morning?
There is always something you can do to help the world become a better place

• What do you like to do when you’re not working?
Being with my children, listening to music and watching movies.

• If you could invite anyone to a dinner party, who would be your ideal guests?
Angela Davis has a high profile in the Black Power movement and is still active. I would pump her on strategies and listen to her experiences.

• What advice would you give to young adults with a disability?
Be proud of who you are, demand your rights and a life of freedom. Your disability is a positive thing, anyone who says otherwise is wrong, and their values must be resisted.

Last 14th December 2011 in Trieste (Italy) was held a conference on IL, ENIL was represented there, here you have the report written by Danči Maraž from YHD:

“YHD (Elena Pečarič and Danči Maraž) attended this event as ENIL regional coordinator for Eastern Europe. The conference was mainly attended by PA users from the north east of Italy and was organised by Stefano Baldini from the organisation Lasfida. At the event was also a member of the evaluation commission for the region of Friuli Venezia Gulia, responsible for deciding how many hours of personal assistance an individual can have. Stefano Baldini on behalf of Lasfida and Elisabeta Gasparini from the region of Veneto presented their views on implementing personal assistance in everyday life. The representative from the evaluation commission presented the systems and procedures they use to decide how many hours assistance an individual can get, the value of the individual budget to pay for the assistance and the level and range of services provided according to regional legislation on Independent Living.

In Italy there are big differences between personal assistance services in different areas because each region adopts its own Law on Independent Living and personal assistance. Regions are responsible for providing for and financing personal assistance. Their system works with personal budgets.

At the event there were around 20 to 30 PA users from the region of Friuli Venezia Gulia and also users from other regions such as Veneto and Lazio.

Speakers gave presentations on the barriers they face in their daily activities, and also on the differences between the concept of care and the concept of respecting human rights. The barriers they described are very similar to the barriers that are faced by PA users from other countries.

Elizabetta Gasparini went through the basic requirements that are needed for employing personal assistants. After her presentation a representative from the evaluation commission described in detail what the commission is focusing on and what terms it is working under.

From what was said at the event the region of Friuli Venezia Gulia has the best services for PA users in the whole of Italy. In this region Independent Living services are made up of three services that can be bought with a personal budget:

-       Home care;

-       Rehabilitation;

-       Personal assistance.

The costs of the above services are covered within the personal budgets that the users receive in order to be able to live independently away from their families.

According to Independent Living legislation in the region of Friuli Venezia Gulia a disabled person can receive a personal budget to enable independent living even if he or she lives with his/ her family. That is one thing that should be taken out of the law because as a result many personal budgets now end up in the family budget and the disabled person does not get the independent support to which they are entitled and is therefore left dependent on their families.

Danči Maraž”

Download the report here

Morten Kjaerum, director of the EU Agency for Fundamental rights (FRA) Photo: Justine Balagadde

Last week Morten Kjaerum, director of the European Union Agency for Fundamental rights (FRA), came to Stockholm for two days to meet with ministers, officials and local NGOs working in the field of fundamental rights.

ENIL had the chance to meet with Morten twice during his visit. At first there was a meeting arranged in partnership with the Centre Against Racism. ENIL was represented through Erik Ljungberg, from the ENIL board, Johan Petersjö, a member of JAG and Kerstin Sellin, coordinator for ENIL activities in northern Europe.

AT the meeting Kerstin stressed that fine words cost nothing, but human rights must be paid for.

– To ratify the UN convention is free, but for accessibility and personal assistance you have to dedicate resources, she said.

Photo: Justine Balagadde

Later in the afternoon ENIL was exclusively invited as “FRA associates” to discuss possible future joint working on FRA related events in Sweden. Erik and Kerstin took part in this meeting, held at the ministry of enterprise.

As a part of the FRA advisory board, ENILs director Jamie Bolling was originally invited to the meetings but she was unable to attend.

“We would like to make you aware of current concerns that disabled people in Hungary are faced with. Recently the Hungarian Government changed the whole disability pension system, which will be a lot worse than the previous system especially for disabled people. The biggest changes are connected to the rights that arise from the pension system. According to the new system the 1^st and 2^nd disability groups will remain unchanged, but persons belonging to the 3^rd group will be reviewed and according to the decision of the reviewing committee some of them will no longer receive the pension as they did according to the old system. Those who fall out of the 3^rd disability group under this new system will be obliged to take part in a rehabilitation programme at the end of which it is intended that they find employment in the labour market. However considering the current situation even non-disabled well-trained persons with university degrees can’t find employment as at the present time in Hungary it is almost impossible to find employment, similar to what is happening in the rest of Europe.

In addition to that there has also been the introduction of new regulations for people with serious physical disabilities obtaining a new car. These regulations effectively mean that the individuals who the car is for will not be able to use it themselves because it will only be possible to get small cars that are not big enough to take wheelchairs. Furthermore the cars will not be adapted or automatic and the monthly rate to obtain a car is very high.

In the case of obtaining a used car (second hand car), the amount of co-financing was raised to 2000 EUR, however this amount must represent at least 60% of the full price with the other 40% paid by the applicant.

Changes in repairing (servicing) of technical devices have also been introduced together with the new disability pension system. According to this new system for example:

For repairing a wheelchair, the travel costs for the mechanic to get to the person and the wheelchair that needs to be repaired, will have to be paid by the user as the Health Insurance system will no longer cover such expenses. In practice this new system will mean that if someone has a scooter financed by the Health Insurance Company, that person will not be able to claim for a wheelchair from the Health Insurance Company; although for many of us this is necessary in addition to a scooter to maintain our independent living.”

Photo: Jessica Linder Jansson

Since 2006, 14 year old Giovanni has been in receipt of 70 hours of personal assistance per week and has chosen to have his personal assistance through the JAG cooperative. Just before Christmas the National Swedish Social Assurance Agency decided that he no longer qualifies for personal assistance. 

Giovanni depends on continuity because of his disability and he needs personal assistance to be able to manage his daily life.  With personal assistance, his daily life improved significantly, especially since Giovanni’s personal assistants were educated in how to respond to his behaviour to minimize his self-harming when he is not feeling good.

Now, his life is in complete chaos.  Without his personal assistants, his problems are starting again. Giovanni’s outward behaviour is escalating and he is starting to hurt himself again. Giovanni’s mother appealed to court to review the decision but does not know how long this process will take.  Meanwhile Giovanni is living his life without personal assistance.

Previously Giovanni’s mother was employed as one of her son’s personal assistants.  Now she’s unemployed but she can’t take another job because then Giovanni would be left alone.  Another issue with this is that now Giovanni can’t choose who he would like to assist him.

Letter about human rights violations in the Czech Republic in the so-called “Homes for the Elderly

This letter is based on my personal experiences and findings in the so-called “Home for the Elderly” in Hermanuv Mestec, which is under the direction of the Prague Municipality.

People are placed in these “homes” without knowing what type of institution they are going to. There is no consideration of their age, health condition or their individual needs, which would allow them to continue living, wherever possible, a full life. The leadership of these Homes replaces this with paperwork, in the form of the so-called “individual plans for the clients”. By being placed in the Home for the Elderly, the person – client is deprived of their human rights.

In the Home, whether in their own room or in the common areas, the mentally healthy client is often exposed to aggressive behaviour by other clients with mental health problems. Some of them are often under the influence of alcohol, even though they are prescribed various medications.

Any complaints about the services or the overall situation in the Home are dismissed by the leadership of the Home. Well founded criticism of the employees is seen as a personal attack.

Clients who complain are offered drugs to calm them down, are threatened with going to a psychiatrist, eviction or are outright placed in a psychiatric institution. Possible witnesses are “influenced” by staff members of the Home’s social department in order to change their statement.

In case of a suicide of a new client, who hasn’t received enough support in the process of “group integration and using spare time”, the leadership of the Home is trying to evade any responsibility by using fabricated notes about the client’s behaviour, blaming the suicide on the client and their previous family situation.

The leadership is evading responsibility also when it comes to other “unusual deaths”, even though a more detailed and objective investigation would show that even in such cases the Home leadership bears a part of the blame.

The Director of such Home for the Elderly, who practically cannot be fired, is therefore the master of life and destiny of possibly hundreds of individuals, including the staff, whose favour he is trying to gain by, among other, distributing donations, given by donors in good faith that they will be received only by the clients, especially those most needy.

Judging by the reactions of the trustees of these Homes, in this case the Prague Municipality, such treatment of individuals – clients falls under the Quality Care Standards in this type of “institutions”.

The leadership of the Home for the Elderly is aware how difficult it is to prove these facts in such institutions and human rights violations, as well as other unacceptable behaviour, which isn’t accepted in a civilised and just society, is commonly experienced in the Czech Republic by regular people, especially those with disabilities. There is no interest or pressure among our public and political representatives to prevent such things from happening.

This letter was sent to ENIL by Alojz Janiga and reprinted with his permission.

Download the letter

In Czech

In English

Bulgaria has finally ratified the UN Convention on Rights of Persons with Disabilities. After a long and hard battle for the human rights of many disabled people in Bulgaria, Parliament has taken this serious step and ratified the Convention. This historical moment for persons with disabilities in Bulgaria is the first step in finally recognising the rights of disabled people. NGO’s in Bulgaria are now facing the long path ahead of enforcing the articles of the Convention as a real instrument for Independent Living and human rights. The problem is that Parliament has excluded the Optional Protocol from the ratification process. Unfortunately this puts persons with disabilities in Bulgaria in the disadvantaged situation in which they can’t address the UN Committee that’s working on the correct implementation of the Convention. Bulgarian NGO’s will now fight for the inclusion of the Protocol and will pursue the Bulgarian State to take this reasonable step forward. We are just at the start of the path but at least we now see it in front of us.