Aldona Droseikiene 18-19 of March Kaliningrad Support for Civil Society and Equality in Baltic The...
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- Slide 1
- 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
- Slide 2
- 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.
- Slide 3
- 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.
- Slide 4
- 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
- Slide 5
- 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.
- Slide 6
- 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.
- Slide 7
- 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.
- Slide 8
- 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
- Slide 9
- 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
- Slide 10
- 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.
- Slide 11
- 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
- Slide 12
- 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.
- Slide 13
- 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
- Slide 14
- 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
- Slide 15
- 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
- Slide 16
- 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
- Slide 17
- 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
- Slide 18
- When nobody can help....
- Slide 19
- 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
- Slide 20
- 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
- Slide 21
- 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
- Slide 22
- 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.
- Slide 23
- 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.
- Slide 24
- 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.
- Slide 25
- 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.
- Slide 26
- 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.
- Slide 27
- 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.
- Slide 28
- 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
- Slide 29
- 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.
- Slide 30
- 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.
- Slide 31
- 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
- Slide 32
- 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
- Slide 33
- 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
- Slide 34
- 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.
- Slide 35
- 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.
- Slide 36
- 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.
- Slide 37
- 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.
- Slide 38
- 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.
- Slide 39
- 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
- Slide 40
- 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.
- Slide 41
- 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.
- Slide 42
- 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.
- Slide 43
- 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.
- Slide 44
- 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.
- Slide 45
- HELP! when needs most