Aldona Droseikiene 18-19 of March Kaliningrad Support for Civil Society and Equality in Baltic The...

Aldona Droseikiene 18-19 of March Kaliningrad Support for Civil Society and Equality in Baltic The project is co-financed by the Nordic Council of Ministers. Project No. 14224. Agreement No. 14-00768

Tolerance and positive steps towards the discrimination of older and disabled people project is dedicated to developing, testing as well as surveying and cataloguing, social innovations for older and disabled people.

Exhibition Under presure Under Pressure has been designed to illustrate the European state of play using powerful and evocative images. Through a photo exhibition, a booklet, video documentaries and website, Under Pressure communicates the experience of living with MS not only in a personal way, but also in a political way. Their pictures and video footage show the courage, perseverance and mental resilience with which those people respond to the daily pressures The portraits also illustrate the conditions prevailing in twelve European countries, and the growing disparities between these states in their approach to MS And this is where the Under Pressure project makes its point: it shows how the variations between national health and social policies can greatly influence the lives of people with MS for better or for worse. With Under Pressure, EMSP hopes to effectively promote the interests of people with MS all over Europe, to improve their wellbeing and quality of life and to reduce the health inequalities they face.

Minsk, Belarus, 10/2011 In the one-room flat he shares with his mother, Andrei Boukatyi (34) practices Qigong every morning to build his strength and improve his balance. He chose this alternative therapy after prescribed MS medications caused him periods of depression and aggression. Yet his advanced condition makes it almost impossible for him to navigate the stairs in his building. Andreis disability pension, based on years of study (3) and work (3), is about 50 euros per month; his rent costs about 27 euros. His mother, Tatiana, will soon reach the age of forced retirement and their combined income will decline

Minsk, Belarus, 10/2011 Alena Kleshchanka (51) has spent most of the past seven years organising her days around Nicolais needs. Blind and virtually paralysed from the neck down, Nicolai is mentally sharp. While the physical burden of care is heavy for Alena, the couple continue to share a loving relationship.

Tallinn, Estonia, 11/2011 Harry Kestlane sits quietly at the table, coffee mug within reach but unable to extend his arm to pick it up. MS played a role in the end of Harrys first marriage and now he meets his daughter very rarely. Because his disability pension is so low about 300 euros per month Harrys current partner, Kaia Nolvak, needs to work. The State argues that his family should take responsibility for his needs and refuses to provide a personal carer. Harry passes most days in exactly the same spot his wheelchair is placed in the morning.

Tallinn, Estonia, 11/2011 Chess has been vital in helping Harry Kestlane adjust to living with MS. Mentally mapping each move has honed his agility in critical thinking and analysis while playing in tournaments provides a chance to establish friendships with healthy people and makes him feel like an equal member of society.

Quellenhof Centre, Bad Wildbad, Germany, 12/2011 During her first visit to the Centre, Sabine Gans takes a bath with electrodes to stimulate muscular function. She finds the three-week therapy session both invigorating and exhausting. The intensity of the programme is highly effective; but it lacks the distractions of daily life that help her forget even for a few minutes about having MS

Freiburg, Germany, 03/2012 Both architects, Amadou and Bettina Tour share a passion for culture; but they are at odds over the current stage of living with MS. Three years ago, Amadous neurologist recommended chemotherapy in order to halt, at least temporarily, further loss of function. Amadou believes he can manage MS through a positive attitude and a healthy lifestyle. Bettina worries that he will soon lose the ability to walk altogether, which would have a dramatic impact on their lives together and individually

10/2011, Reykjavik, Iceland Steinn lafsson believes that being a carer is partly about being an enabler. Gurn Sigrur Eirksdttir works out regularly at the MS Centre (MS Setri) so she can pursue an active lifestyle. When fatigue and loss of balance threatened her golf game, the couple began renting a cart and devised a duck and grab manoeuvre that keeps Steinn from taking a hit during the downswing and Gurn from landing face-down on the fairway.

10/2011, Reykjavik, Iceland Electric scooters provide little protection against foul weather, but more than enough energy to empower Kristjn Einar Einarsson, Helga Kradttir and Jn rarson (right to left). A mentality of independent living pervades Icelandic culture, and underpins investment in facilities and infrastructure. In fact, with secure financial support for physical care of PwMS, MS-flag slands (MS Society of Iceland) feels lucky to be able to offer services that focus on psychological, social and overall well-being

12/2011, Dublin, Ireland My speech is affected, and can be very slurred, says Mary Bartley. Unfortunately, that sometimes gives the impression of someone whos out having a few drinks. Its horrific to feel that someone you meet in the morning is thinking that youre absolutely drunk, especially because I dont always realise that my speech is off.

Radom, Poland, 10/2011 Monika Kladko was diagnosed with MS at age 18; XX years passed before she received DMD therapy, but even so she showed good response in terms of physical symptoms and stabilisation of lesions. But, as per Polish health polish, the drug was removed after three years and Monikas condition quickly declined. She is no longer able to walk, but modifications her father Antoni has made in the kitchen allow her to undertake many tasks alone

Radom, Poland, 10/2011 The Kladkos estimate that living with MS has consumed two-thirds of their net worth. Small gestures, such as an envelope with a few zlotys left by friends or free entry to the public pool, help to keep them afloat financially and psychologically. Many PwMS enjoy swimming: being buoyant in the water, they can move their limbs more easily. They feel more normal, less sick

Oradea, Romania, 11/2011 Cristian Bunda (40) boards a plane in Oradea (Romania) to undergo an MS therapy offered only in Serbia. In 2006, the European Commission implemented a comprehensive regulation (EC 1107/2006) related to barrier-free travel for persons with disabilities. A further Directive (11038/2/2010; adopted in January 2011) upholds the right of EU citizens to seek medical treatment in a country other than their own, and to be reimbursed for all costs incurred

Ispanija Madrid, Spain, 10/2011 Horseback riding gently and rhythmically moves the rider's body through motions similar to walking. It was developed as a specific therapy to improve flexibility, balance and muscle strength in the trunk, pelvis and hips the 1960s. Almudena Movilla Morenas sessions typically include balance and co-ordinated movement activities for a full-body workout that increases functionality both on and off the horse

Aversa, Italy, 03/2012 At present, I have no problems in terms of getting around: I can drive, I can walk and I can work, says Stefania Salzillo. But I can see that if this changes, everything will take more effort. So, I think this should be an important objective of government policies to raise awareness of these difficulties and sharpen the focus on solving these problems. Every citizen should be given the same opportunities to live

When nobody can help....

What means an informal care? If not currently caring for someone ourselves, we probably all know somebody (a relative, a friend, a colleague) who is responsible for looking after a dependent person, such as an older parent. The experience of providing informal care to our loved ones can be satisfying but it is also a challenging one. It happens everyday in dozens of houses in your neighbourhood and in hundreds of thousands of households across your country. Around 125 million people in Europe are now providing care for older people or disabled relatives

Carers own needs.Looking after herself/himself Being a carer sometimes makes it difficult to take care of themselves. Priorities are changing as the disease progresses and looking after themself takes usually last place on a long list of heavy duties. Caring for a loved one isnt an easy task, but it is important to understand the value of being a carer and living well. Being in good psychological and physical shape helps carers to provide quality care. Work and Care reconciliation

Coping with stress and depression Stress is part of everyday life and, for many carers, stress can be a major factor affecting their health. Stress is caused by the many demands made on our time and energy and the expectations we have of ourselves. Not all stress is negative stress can alert you to potential dangers and can also spur you on to achieve a goal or complete a task. However, sometimes the balance tips too far and the pressure becomes so intense or so persistent that you may feel unable to cope. Stress can make it hard to cope with the demands of caring

Work reconciliation Have you ever thought to reduce hours at work or even to leave your work because of caring? Working while caring isnt an easy task. Employers and fellow employees might just not get it! Trying to be on time with work tasks and to be also a devoted carer generates stress, not always easy to manage.

Main work and career Carers rights at work the right to request flexible working the right to time off in emergencies the right to parental leave if you have a child the right not to be discriminated against or harassed under the Equality Act.

Lithuanian MS Union participates in the development of a multilingual web platform for informal carers that will be implemented in 27 EU Member States Apart from selecting social innovations exemplars and creating a new European evaluation system of their im Apact on healthy life expectancy, four new innovations will be developed and tested: a) social innovation for user driven housing of older people, b) a web-platform for informal carers of older people, c) social intervention for improving obesity in old age, d) social innovation for activation of people with dementia living in long term care institutions.

Supporting workers reconciliation Employers are not always aware of carers responsibilities and how demanding caring for a relative with a chronic disease can become. In many cases, working carers might need urgent leave, flexible working arrangements or to reduce their working hours. There are different strategies employers can adopt tailoring to their specific business and internal processes for addressing carers needs. On one hand, national legislation may offer a framework for workers and employers to rearrange activity and amount/pattern of work. On the other hand, some actions can be put in place by employers themselves through organisational or sector-wide agreements including through the development of an internal policy on the issue.

Actions run by employers Apart from the legal framework, employers can implement different measures for supporting working carers, thereby both benefitting and getting benefit from them. This section includes, on one hand, tips, advice and possible strategies employers can adopt for improving relations with working carers, and, on the other hand, a selection of good practices to be used as a benchmark for improving organisational policies and actions.

Legal aspects Right to request flexible working Emergency Leave The Employment Rights Act 1996, as amended by the Employment Relations Act 1999, gives carers rights to help them manage work and their caring responsibilities A right to time off in emergencies All employees have the right to take reasonable time off to deal with any unexpected situations involving a dependant. At the discretion of the employer, this time off can be paid. To use this right to time off, employees must inform you as soon as possible after the emergency has happened. A dependant includes a husband, wife or partner, child or parent, or someone living with the employee as part of their family. Others who rely on the employee for help in an emergency may also qualify. Situations where leave might be taken are: A disruption or breakdown in care arrangements.

Legal framework Carers legal rights have changed over recent years and it is important for employers to ensure that they are complying with the law. This section highlights the key legislation affecting carers in employment and the issues of which employers should be aware. In addition to carers statutory rights, employers may offer carers more support in the form of contractual rights and often report real benefits from doing so. For example, these rights might include a provision for the employee to use leave arrangements, paid or unpaid, at the employers discretion to cover intensive periods of care. Sometimes the support carers need is very simple such as access to a telephone or information and advice. This support should be outlined in the employees contract and in the organisations policies

Equality Act People who are looking after someone who is elderly or disabled are now protected against direct discrimination or harassment because of their caring responsibilities under the Equality Act 2010. This is because they are counted as being associated with someone who is protected by the law because of their age or disability. The Equality Act 2010 replaces the existing anti-discrimination laws with a single Act it not only simplifies the law, removing inconsistencies, but it also strengthens it in key ways to tackle discrimination and inequality.

Why supporting working carers is important? It is fundamental that organisations implement good strategies for addressing workers needs and allowing them to reconcile work and care. The positive effects of adopting these solutions are many, both at the individual (carers) level and at organisational level. With this perspective, it is clear that working contexts should adapt and allow an adequate balance of work and personal duties to people, respecting their right to health in all its components. This would have a great benefit to carers in terms of improvement (or at least maintaining) of physical and psychological health and social inclusion.

Caring for the elderly 1.2. Care and support services 1.2.1. Home care 1.2.2. Residential care 1.2.3. Independent living for older people 1.2.4. Care services for people with ADL limitations 1.2.5. Volunteer support services 1.2.6. Counselling services 1.2.7. Community activities for carers 1.3. Mobility services 1.3.1. Discounts on public transports 1.3.2. Delivery services 1.3.3. Assisted transport services

Home Care (sometimes known as home help or home support) is care provided in the own home to enable the person to maintain independence. It involves regular visits from a home care worker. Personal Care refers to anything done for you that is of a personal nature. Medical care:: Once you reach the age of 65 youll continue to be invited to a variety of NHS health checks, and there will also be some screening tests that you may be offered once you reach the age of 65. Day Care offers personal care during the day for those who are assessed as needing it. It is usually provided in a day care centre run by trained staff or volunteers for those with complex physical and social care needs. Respite care means that the carer can get a break from caring. Home care

Residential care Helping a loved one move into residential care is often one of the most important and difficult decisions youll ever be involved in. It can also often be one of the most emotional decisions for the family. You may feel uncertainty or guilt, especially if you are under stress and, like many, have had to make decisions and choices quickly. Ensure that the local authority carries out a full assessment of the care needs of the person you care for. A lot of people going into care dont even realise they can get an assessment particularly if they are funding their care themselves Care and Nursing homes

Independent living for older people When caring for a loved one, many of us are faced with the prospect of revising our living arrangements. If you feel overwhelmed by home upkeep, cut off from transport and social amenities, or simply want more companionship with others, an independent living facility may be a good option for the cared for person. Supported housing Supported housing is specially-designed accommodation, mainly for people aged 60 or over, which you can buy or rent from providers such as a Local Authority, housing association or private company. Supported housing may be the answer if the cared for person wants to live independently, in a smaller and easier-to-manage home with accessibility features, and with the reassurance of having someone to call on if there is an emergency.

Care services for people with ADL limitations There are different types of specialised assistance available for dependent older people living in the community and with limitations on Activities of Daily Living (ADLS) these include equipment and home adaptions, telecare, care and repair services and continence care services.

Volunteer support services In some cases care and support public services are not sufficient to take care of your loved one, so non-profit and voluntary support services might provide some additional and complementing help such as helplines, home care services, advocacy, group support, emotional support, practical support, counselling and psychological support, advice guidance, befriending and funding advice.

Counselling services Counselling aims to support someone in expressing their thoughts and feelings about what is happening in their life. Often carers find themselves in situations where their wishes and needs take second place to the person they care for. Carers sometimes feel they cannot talk to their family and friends about how they feel about their caring situation.

Community activities for carers Breaks or time off from caring to take part in community activities are vital. Whether its an hour every day or a couple of hours a week, we all need some time to ourselves, and carers are no exception. Breaks for carers are meant to give you time off from your caring role as well as enable you to do something that you want to do for yourself within your local community.

Strategies for supporting working carers You, as an employer, should be aware of the legal framework and rights employees have. However, for maximizing staff engagement and performance you should really think of adopting additional organisational measures for increasing the spectrum of possibilities and support available for carers. This is something you should consider including in relevant workplace policies and, for example, in the corporate social responsibility (CSR) of your organization, since the way work impacts over carers lives is also your business and depends upon ethical choices of management

Adjustments can include Flexible starting and finishing times. Compressed working hours. Annualised working hours. Shift-swapping and self-rostering. Job sharing or part-time working. Home-working and tele-working. Term-time working. Flexible holidays to fit in with alternative care arrangements.

Changing the culture An organizational culture which allows carers to be open about their situation is key if these policies and practices are to be used by the workers they are intended for. I personally go that extra mile for them because I appreciate what theyre doing for me.

Good practices at national level Understanding the benefits that flexible working can bring to both employers and staff with caring responsibilities is an important part of developing policies and practices. People are not put into boxes: carer or disabled. Every carer is different and will need an individual solution. Flexible working has certainly been proven to benefit the employer in particular through cost savings and increased employee retention. It is the key to ensuring that staff with caring responsibilities can work and continue to be effective in the workplace. It can provide mechanisms for all staff to balance work and life, but it can be specifically beneficial for those who are carers.

Employers would benefit as well from a re-organisation of tasks in different ways. Considering some real experiences from the Nordic countries, a large utility company with a multi-site operation calculated that implementing appropriate leave arrangements for carers constituted a benefit of around 1.3 million Euros a year, by saying [in a caring emergency] you are not dealing with an absence, you are potentially dealing with a vacancy if you dont respond appropriately. The cost of recruiting is incomparable to the cost of 2-3 days emergency leave. The same company also sees the benefits of flexible working in motivating staff, making them more productive: We have anecdotal evidence that if you offer a better work-life balance, employees are more motivated.

When you are a carer, sometimes you find yourself in a position where you try to combine different family roles: as a parent, as a spouse, as a child and as carer. Reconciliation between family relationships and care giving is a difficult task.

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Aldona Droseikiene 18-19 of March Kaliningrad Support for Civil Society and Equality in Baltic The...

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