1th Day – Briefing in Viltis office and visit of Viltis Akimirka day care centre.
Attend
the meeting Felice Bisogni, Stefano Pirrotta and Silvia Policelli from GAP
organization; Zana
Skejo-Skoric,
Tomislav Velìc, Maria Crnjac from Bubamara association; Natalija Olesova and
Dana Migaliova from Viltis association; James Rutherford, Linda Barrett and
Briony Williamson from Enable Scotland.
We
meet at Viltis office Kareviu str. 2c, Vilnius . The office is located not far
from the centre. By bus we passed the river Neris that cross Vilnius. From the
bus we saw a bridge and a semicircular building whose architecture remind us
the past communist regime in the country. We arrived at the bus stop “Pramogu arena” from where Natalija
guides us to the Viltis's building. Recently renovated the building hosts at
the second floor the administrative office of Viltis and at the first floor the
Viltis Akimirka day care centre.
Natalija
introduces Viltis organization. Viltis, (in English
it means “hope”), has been founded in November 1989, just after the fall
of the Berlin's wall. Parents of persons with intellectual disabilities found
the organization to give support to the families. The organization has offices,
day care centres and other services all around the country. Natalija starts to
translate Uratia, the director of “Viltis Akimirka” (in
English it means “moment of hope”). Uratia explains that “Vilties
Akimirka” is a public institution founded by Viltis welfare society for persons
with mental disability in 1999. Viltis Akimirka works under 3 programs: the
family support program in Vilnius area, the special transport program and the
day care centre program for people with very complex mental disabilities.
Viltis Akimirka employ 14 persons. One psychologist, two social workers and one
assistant of the social workers work within the family support programs. The
family support program involves not only the person with mental disabilities
but also others members of the family such us mother, fathers, brothers and
sisters. It is active in the evening between 6 pm and 9 pm as a continuation of
the day care program. The second program is the special transport program
transporting everyday 220 children to 14 educational institutions and employing
20 workers. Vilties Akimirka has today 11 buses equipped for transportation of
persons with disabilities and with wheel chair. The model of special
transportation was “imported” by Dana from Canada. Since 2003 Vilnius
municipality buy this services and at the time “Vilties Akimirka” was the only
organization to do it. Nowadays many organizations competes offering this kind
of service in the social services' market. The third program is the day care
program for persons with very complex disabilities active at the first floor of
the building in the centre where Andrius
works.
Tomislav
asks how the transport service is organized in the rural areas out of Vilnius.
Dana replies that Viltis has different brunches in each region of the country:
each of this brunch works independently in connection with the local
municipality. “One of the main works we are doing nowadays is to be competitive
in the social market trying to set up new services for persons with very high
and complex needs: our ambition is to be the best” Dana replies.
This
seems an interesting issue: from the born of Viltis in 1989 something changed.
Nowadays Viltis acts in Lithuania as the main care service provider in a social
market where also others organizations are active. In this framework Viltis
cares the quality of the services and the development of new models of
intervention.
We move
to the first floor to visit the “Viltis Akimirka day care centre”: Andrius is
our guide explaining how the centre works.
During 7
years the program for the day care of person with complex disabilities is
financed by Vilties Akimirka centre. The centre is attended by 21 persons: 80 %
- persons with complex disabilities.
“The main goal of the Centre is to promote self independence of persons with
mental disabilities, to employ them in creative activity, to integrate them in
the society”. “When we communicate with our clients we always say to them that
we are here to work and not just to enjoy”. “They always have a lot of work to
do: to communicate between each other but also to do excursions and shopping or
going in the cafè to be integrated in the society”. “We start since 7 in the
morning until late as we work in relationship with the parents’ wishes” Andrius
says. Tomislav asks about the relationship between the centre and the
neighbourhood: “How is the reaction of the society?” Uratia replies that “the
situation is coming good little by little: this place is to say that this
people exist”.
We start
the visit of the centre and there are many rooms: one for each “gravity level”
of the guests of the centre. Some of them join different activities; others
rest in the beds and the sofas.
We are
strangers in an ordinary day at the centre and clients seem curious.
Andrius
shows us the rest of the centre: a kitchen and the room of the chinesitherapy
where Andrius one hour per day works with each person attending the
centre. The centre doesn't work during
the night and the clients are not allowed to pass the night in.
After the
visit to the centre we come back to the second floor for a briefing. Jamie asks
if the clients pay for the service. Uratia replies that the bigger percentage
of the cost of the services is covered by the municipality and the rest by
parents. “By the law people with mental disabilities can use until the 50%
percentage of their income as disabled persons to pay for the services”. “For
example my son pays 400 litas per mount that is not a big amount of money”,-
Dana adds.
“What is
the quality of institution in Lithuania?” Tomislav asks. “What kind of
institution?” Dana replies. Tomislav explains that with the terms institution
he intends place were persons with disabilities can rest night and day. “Like
homes” Zana adds.
In this
regards the term “institution” refers to residential structures opened 24 hours
a day that substitute the families caring functions and that has weak
relationships with the families itselves and with the local community.
Dana
tells that in Lithuania there are 26 big institutions “coming from the soviet
time and still active where live 6000 people”. “I'm a member of a monitoring
committee coordinated by the ministry of social affairs”. “During the last mouths we have done many inspections
discovering lot of human rights abuses such as sexual, physical and drug abuse
in the institutions”. “After the reporting of such abuse the state decides to
close the institution and on Monday there is the first meeting of the working
group aimed to the start closing the institutions”. “For that we need to
develop good community services ” Dana adds. “There also 3 institutions for
mental disabled children: in soviet time there was 4000 children and nowadays
there are 673”. “I guess this is also because meanwhile we have developed not
bad quality community based services” Dana continues. “There also 3 babies home
for children from 0 to 3 years for witch the ministry of health care is
responsible”. Dana tells us also that there is a big debate linked to the
application of the children rights convention that push for the closing of such
institutions. The issue is now under discussion in the Lithuanian parliament.
Emerges
the pictures of a country where de-institutionalization process is started and
is on going. In this framework, as Dana says, is very important to set up
community based services and to train professional workers.
Group
homes and respite care services “to give a short break to the families” are the
main community based service implemented in Lithuania to go along with de-institutionalization
process. Tomislav propose a comparison with the de-institutionalization
process in Croatia. “Due to the convention of human right and the European
guidelines politicians are going to close the institutions and after that we do
not know what will happen with this persons”. “It's incredible to close
institutions without and alternatives” Tomislav adds. “What would it be the
alternatives for the people that was in the institutions? Do they plan to
organize some institutes or other things?” Jamie asks. “Home is the
alternative: the family institution” Dana says. “We have a strong institution
of families in Lithuania: my family and Natalija families are examples of how
the family can be responsible of the caring of a person with mental
disabilities” She adds.
The
family represents as a social actor doing caring activities and dealing with
problems, feelings, desirers of the persons with mental disabilities. The
competence of the family in taking care of the child and in dealing with
problems seems crucial. To help the family in developing this competence can
lead to an improvement of the quality of life of the whole family.
“Nowadays
we have 31000 persons with mental disabilities in Lithuania: 25000 stay in the
families, 6000 in the institutions” Dana says. “In many cases family members
are the only responsible for the caring of persons with mental disabilities.
That's why families need to have supports via the services for the person with
mental disabilities” Dana adds.
At this
point we start to discuss organizational issues regarding the Viltis Akimirka
day care centre. One problems - Natalija explains- is that if the clients
doesn't attend the centre the municipality doesn't pay the daily rent. As a
consequences the payments of the staff of the centre are not always guaranteed.
Linda asks how this situation affect the mood of the staff of the centre.
Natalija replies that on the one hand the workers are usually asked to be very
charitable persons and on the other hand the organization use, as much as
possible, extra money for other programs or from the families' payments to pay
the staff.
Another
discussed problem regards the waiting list of persons asking for services.
“Many of them simply don't have any services” Dana says. “It' a difficult
situation. We try to face it involving parents with no services in the summer
camp activities or setting up discussion group every two weeks, specially in
the countryside”. “Another possibility is to ask the families for a payment
using a percentage of the welfare income of the persons with mental
disabilities but especially in the countryside the families do not want to pay
and we cannot do nothing” she adds.
Expectations
and attitudes towards services and care service providers seems changing during
the time: “We have different generations of users and new generation of parents
looking for quality of the services since the early intervention: they are
different from my generation”.
We
understand something more about Viltis history. The initiator of the
organizations was Professor Puras one of the founders members and an eminent
Psychiatrician. Other initiator of the organization are parents of person with
mental disabilities. Between that parents one of the founded members was Dana
Migaliova. An important partner of Viltis since its foundation is Lebenshilfe
organization from Germany and Enable Scotland that have supported Viltis giving
the possibility to the members to “open a window to the western county”. The
main body of the organization is the council of Viltis composed by 30 people
and responsible of all the activities of our organization.
Viltis
since 2004 is an association composed by 53 associated members: financially
independent brunch organizations located all over the country. Dana and other
members often travel all over Lithuania to get in touch with these
organizations to know better their problems and to coordinate them in setting
up “respite care services” that is one of the actual priority of Viltis. Viltis
is also member of Inclusion Europe and Inclusion International. Viltis has
partnership with different bodies such as political parties and universities as
the organization act as a context of practice and training. In particular for
Viltis the link with University is very important also as a link with professor
Puras, one the founded members of VILTIS. Furthermore Viltis works to produce
and ratify conventions, documents and legal acts: “the convention of rights of
persons with mental disabilities is the main document in the actual work of the
organizations” Natalija says. However as Natalija points out the ratifying of
such legal acts and conventions is not always effective and the rights are
often not implemented. “The main ends of Viltis, Natalija says, is that the
persons with mental disabilities can have the rights and possibilities to live
a safe life, to choose and to live with their families”. Natalija concludes her
explanation of Viltis work with a wish: “that the result of our project can be
to write another project to realize innovative interventions in the field of mental
disabilities”. “This would be the best results of what we are understanding
from the interviews” Natalija adds. After that we move to the Sviesa centre:
“one of the best day care centre” in Lithuania as Dana says.
1th Day – Visit of Sviesa day care centre.
We arrive
in the centre with the Viltis Akimirka van. Sviesa centre is located in the
middle of a nice green residential area composed by small family houses. At
entrance the director of the Centre welcomes us and guides us to a conference
room with a round table and a refreshment. The director of the Centre starts to
talk about the work of the centre while Natalija translate in English.
The
centre works under a specific welfare program for persons with mental
disabilities aimed to improve the quality of life of the person with mental
disabilities during the working time of their parents. Parents can leave the
children until late (9-10 pm) or also for the whole night if they needs. This
is not obligatory but depends on the request of the family. The second task of
the centre is to develop the talent and abilities: what person with mental
disabilities can do best in their life in regards to the differences of each
person.
These two
points seem interesting: Sviesa centre seems a flexible service. Flexibility
gives the possibilities to the families to express their requests and to be
active in the organization of the service itself. Furthermore the shift of the attention from
“the teaching of ability” to “the discovering of the talents” seems interesting.
The
traditional day at the centre starts with the arrival of the clients that can
have a rest in the centre, relax and communicate with friends and
professionals. After that the persons can choose what to do and do not have to
follow pre-determinate activities: “one day they can paint, one other they can
do theatre or play a drama, one other they can do whatever they wants or go
shopping in the city or go in a place they want to go” the director says.
The
choice to set up this kind of service is linked with the third end of the
centre: to respect a democratic principle giving to the persons with mental
disability the possibility to choose. “In Lithuania the soviet influence is
still very heavy but we try to show that there is the possibility of a new
present”. “To this regards the centre cooperate with university and other
organizations to build a broader open minded democratic society” the director
says. After that the director of the centre gives to each member of the project
team a recently published book with photos of professionals and clients of the
centre. The book collects some interviews of mothers of persons with mental
disabilities realized by professional journalists.
After
that introduction to the centre and its work starts an amazing quick visit of
the centre. In more or less 20 minutes we have the possibilities to see a
theatre show played by persons attending the centre and operators, to see a
ceramic laboratory, to listen to the centre's orchestra, to have a look of some particular painting technics developed
in the centre to improve the talents of the clients. The visit in Sviesa centre look like explosion
of productivity of that place some interested visitors. In the quick visit the
clients of centre “change their clothes” to be actors, musicians, artisans,
guides. The productivity of SVIESA centre seems a strong, effective message to
past and actual representation of the people with mental disabilities as
unproductive and to be assisted
eternally.
Natalia
proposes to start with the discussion of Viltis interviews. She underlines the
difficulty in doing the interviews with the parents of persons with mental
disabilities. “To be honest I have to say it has been hard to take the interviews
because many parents do not want to do it because for them, I think, it's hard
to remember all this difficult way and life form childhood until now”. “I think
that it can be easier to interview parents of persons with mental disabilities
and down syndrome but to speak with parents of persons with complex disability
has been very difficult”.
She
has directly done the interviews with two families. One of them initially
agreed to be interviewed but then hesitated and “At the end they write down on
a papers the answers to some of the questions but not to all the questions”.
Natalija starts reporting this interview: “they do not answers our questions”
she underlines. They are parents of a girl born in 1994, with cerebral palsy
and spastic tetraplegia. In the interview they criticize the political and
welfare agenda for persons with mental disabilities: “everybody speak about
integration into society but in Lithuania you never see a person with mental
disabilities in a shop or in a restaurant” the parents says. Natalija
commenting the interview connect this problem to the physical barriers present
in the the country. At the same time the research by Eurobarometro, quoted in
our approved project proposal, highlights that in all the European Union the
citizens think that is very difficult to take part in a concert, to eat in a
restaurant or to attend an art exhibition or a person with mental disabilities.
The
problem underlined by this family seems connected to the cultural
representation of the persons with mental disabilities and with the way
citizens get in touch with them. Care service providers represents a minority
not scared by the persons with mental disabilities. What about the others?
The
interviewed family members looks at the state as non interested towards their
problems. The absence of sanitary and welfare services are seen as the
demonstration of the impossibility to get an help from the outside. They quote
an article on a newspaper where Dana Migaliova declared that “letting her son
in the social service after death would probably bring him fast to die”.
A lack of
hope in being helped and the distrust towards every kind of institutions make
the discussion of the interviews very hard. Many rhetoric questions are posed
by the interviewed parents, as Natalija underlines, bringing us very close to
the powerlessness and desperation of this family.
“They
give you benefits but nobody care how you cope with your problem” the parents
says. However, on the other hand, parents seems gratefully towards two
different sanatorium attended by their daughter during childhood. Finally they
make a request to the Viltis Akimirka centre they attend: “to organize a
bedroom where the families can let her children in they ask for it”.
It's not
easy to think about the feelings expressed by this families. “We have to say
that this families has the opportunity to attend Viltis Akimirka centre while
others families cannot” Natalija says. “We exist for this kind of problem: our
lawyer are in every place we discuss about disability to fight for the rights
and to develop the condition of person with mental disability” “Since
independence of Lithuania 20 years ago a lot have been done and we know we have
to do more but at this level of development of the county it's not easy”. “We
need time, money and initiators: people full of energy who are active and who
want to work”.
Clients
such as Lora's parents represent a challenge for the Vilties Akimirka day care
centre. Their dissatisfaction, their requests of different services underline a
new kind of demand towards the care service providers. Natalija underlines the
importance of finding new “initiators”: creative workers committing to build
the development of existing services after twenty years since the founding of
Viltis.
“Laura
lives in Croatia” Tomislav says. “In Croatia there is quite the same situation”
Zana adds. “Yes we are convinced of the need of personal assistance” Natalija
replies. “Day care centres are not enough: they need persons everyday at home,
not only centre where to let children: it's just to help them to stay normal”
Zana replies. “Was the situation different when Lora born?” Jamie asks.
“She is
30 years old: she was born in 1984. Lithuania become independent in 1992 and of
course the situation has changed since that time”. “Nowadays we have a social
system”. “Several things has changed. It easier to know the diagnosis, it's
easier to go to the kindergarten, in general it's easier to stay in an
integrated way in the school system”. “At the same time we know that personal
assistant can be important for persons with mental disabilities but this idea
is not developing because it's need lot of money and government is worried
about that” Natalija replies. “In Croatia all the money for personal assistance
comes from EU” Tomislav says. “We think that the situation should be discussed
and carried on at the level of the Municipality: they have social care
department and the government should write such a law to allow that”.
It seems
important to activate a network of different stakeholders (third sector
organizations, public institution, families and professionals) to create new
services and innovate the welfare system.
Natalija
starts to talk about the second interview with a mother, Irene, of 13 years old
girl with down syndrome called Saula. The mother has also two growing children.
Her husband was devastated after knowing Saula's disability: “This is a very
normal situation” Natalija comments. The
first question Natalija poses is “who or what institution had help you with an
advice or providing the necessary support?”. The mother replies she didn't
receive help from the institutions. At the same time she remember the precious
advice of Saula's doctor “to be just a mother with her daughter”.
“It's
difficult to understand and become used to the thought that your child is
disabled”. “In that time you need people around giving you moral support” the
mother says in the interview. “Irene tells that staying with another mother of
a person with mental disability, talking without being judged has been the best
help for her”. “It is important not to be alone, to stay with people helping
you to look to your situation on the other sides” she says in the interviews.
When she
first heard about Viltis society she was a genetic centre where they give a lot
of books and brochure about down syndrome. Irene thought that nobody nor
institution would help her: she was depressed. Frank and genuine conversation
with professionals gives her more help than books” Irene says
Emerges
the importance of services where parents can deal with their problems helped
by professionals.
“Yes but
also to talk with other parents is important as when I speak with parents they
say that I cannot understand because you are not a mother” Zana adds. Natalija
passes then to the second question posed to Irene that is “what are the major
actual problems and how you solve them?” What institution of community help you
most of all?
Irene
replies that the problem is “a lack of time and money”. “Lack of time and
money” for Irene means than to give extra money to the family budget Irene
works at several places and in this way he has not enough time to take care of
herself due to the care needs of her daughter such as go to the doctor or
somewhere else. Irene and Saulia have a lot of friends within their community
but, as Irene says, it has become a luxury to spend some time with them.
A
recursive complain regards the lack of money and time. In the first interview
we saw that having benefits do not cancel the problem of building reliable
relationship with others. Back to front Irene asserts that she cannot stay with
friends due to the lack of money and time. It can be argued that with enough
money all the social problems would be solved. Our research shows that also in
a rich country as Scotland the families face problems of isolation.
To this
regard Irene's request of setting up parents training to do handicraft or
candles to start do part of their work at home with their sons seems
interesting. It is the quality of the time that the family members spend
together that matters. To set up productive activities can be an important
action to develop the quality of the relationship within the family and with
the local community.
Natalija
report the second question posed “what kind of services do you and your child
need most of all? What kind of service would you like to get?”. Irene starts
talking about respite care service. For Irene it is helpful to have the possibilities to let her
daughter with the staff of the respite care service for several hours or days.
At the same time Irene asks for professionals coming at home and trained to
work with disabled persons. Other important services are for Irene club for
disabled persons. Irene says that they should be organized in partnership with
municipality with the help from the state.
In
general Irene underlines the importance of the training of competences of the
care service. This seems an important point:
the training of the staff in doing specific interventions
Natalija
comments Irene's request of a club for disabled persons where to have party.
She says that Viltis project managers visits one this clubs called Eldorado in
Sweden some years ago. Such a clubs for Natalija are very difficult to realize
in Lithuania as they are not included in the welfare agenda and has to to be
refinanced every year writing specific project. “Another possibilities instead
could be to realize it in partnership with the municipality providing a
suitable place, paying electricity buildings and being responsible for the
continuation of the project”
“We run
such a services since 7 years” Zana says. “Every year we write projects, we
organize disco and karaoke”. “In Scotland we have clubs for persons with
disabilities they can come paying a small amount” “Its very important- Jamies
continues- as persons with disabilities can make friendships with other
persons”. “And what about the building? Where do you set up the club?” Natalija
asks to Zana. “In our building we have two big room one for the disco and one
for the ceramic laboratory. Our members like very much to come and we dance and
sing with them...unfortunately” Zana replies. “In Lithuania in winter time when
it's cold we organize some party or birthday and this room become full of
people: the 21 disable persons attending
Vilties Akimirka plus their parents.
“One
problem for us is that we work with people living in the city or near the city
of Vinkovci and we cannot bring to our centre the person with mental
disabilities living in the rural area and they sit at home”. “And on Monday
they start asking for the van to come to our centre” Zana adds.
In this
regard Bubamara concentrates its activities in the centre and searches for a
way to set up project and services also for the families living in the rural
area. How to deal with this issue?
Natalija
continues talking about the club: “these clubs are very useful, we have a
family support program but it's different”. “I think that as they spent 6 hours
per day in the centre the club should be set up in another place to make feel
them comfortable and relaxed”
Services
are organized in different ways, different feeling are shared by the clients
and the staff. As an example “Vilties Akimirka” day care centre differs from
the Bubamara centre for persons with mild disabilities pursuing a socialization
functions. The importance of that socialization function confirms the idea that
the main problems of the families of intellectual disabilities are relational
problems such as isolation.
Zana
underlines Bubamara's attention and interest in organizing fun and
socialization services such as Karaoke, rock festival and so on as innovative
intervention in the field of disability. At this point Natalija says: “You are
right! We have to write projects and projects, as you do, otherwise
Municipality doesn't hear our voice” Natalija adds. “That's what we do in
Croatia. This year we have financed 20 new personal assistants with European
Union's founding” Tomislav replies.
Projects
can be used as a tool to introduce new services in the welfare system in an
experimental way. Projects, as Natalija says, can be used to start a dialogue
with local and central political institutions to innovate welfare programs.
Coming
back to the second interviews Irene says that community and relationships with
others are very much important in helping family with mental disabilities to
live an interesting life. Finally regarding the future Irene looks at college
as an opportunity for her daughter to became a specialist in growing up plants
and to help them. Irene in this way again underlines the importance for her
daughter to be involved in productive activities. Again Irene underlines the
importance of the training and the competence of the care service providers
working with the persons with mental disabilities.
After
that we discuss the differences between the two interviews: the hope of Irene
compared to the desperation of the parents of the girl with cerebral palsy.
Differences related to the diagnosis but also to the the age of the person with
disabilities. Then comes the turn of the third interview to a mother of 35
years old man called Paolos. “Paolos has blind, autism, rubella syndrome, total
disability man” Natalija says. She starts read the content of the interview.
The interviewed mother starts talks about her experience with services since
her son has born. Since the beginning doctors and parents was the main help not
for the specialised support but for the human support.
Specialized
support in this sense is seen as a technical “non-emotional” support.
During
the soviet regimes disability was certified by other labels: children was
categorized and divided between “organized and non-organized”. The prescribed
path for the non organized children was “the mental institution”. The mother
decides not to put Paolos in such an institution. “Nowadays much have been
changed since the time of independence and there are much more services”.
“However parents with children with severe form of disability are worried about
the future” the mother says. In this context welfare system doesn't represent
reliable stakeholders. For the interviewed parents “respite care services”
carried out by trained social workers represent a very important service:
“parents need times for themselves and children are bored to stay all the day
with parents”.
Personal
assistance is seen as a crucial intervention to be financed by the municipality
and to be set at home or in other context where the person with disability
lives.
“Personal
assistance should be address not only to taking care but should also intervene
on communication's problems” the mother says.
The
mother suggests that temporary respired care service such as day care centre
have to be integrated with personal assistance. In both cases the mother
underlines the importance of the training of the staff working in the services.
To be trained seems necessary to be able to pursue and achieve differentiated
and integrated objectives whiting the two kind of services.
Furthermore
in the report of the interview emerges a good and trustful relationship within
the local community: the mother speaks of reliable persons competent in dealing
with his son
For the
mother the questions of each parent are “why me? why my child? What we are
guilty for?”. She underlines the importance of the YAID project “where
professional and parents stay on the same table to talk about problems and also
to find a way to address them”. “The next step will be to invite also the
persons with disabilities in the table” the mother adds.
“I think
we have seen in all the interview a general need of personal assistance”
Natalija comments. “May be the Scottish team can help about this with
consultation and advice” she adds. “What are the criteria for personal
assistance for persons with mental disabilities?” Zana asks.
“Which
type of personal assistance do you mean? to live independently? to stay in a
respite care centre? To go at school?” Jamie replies.
Personal
assistance seems to be required to facilitate the persons with disabilities in
living different context.
“We
run teaching assistance and personal assistance for who is physically disabled
but we do not run personal assistance for people with intellectual disability”
Zana adds.
It's not
easy to find out criteria for the personal assistance in the field of mental
disabilities. Many factors are considered: the commitment of the workers, the
context where the intervention is set up, type of disability.
Dana
connects the level of disability with the improvement of social and communication
skills as an objective of the personal assistance. Linda explains the
structures of the personal assistance service in Scottland: the social work
department decides how many hours a person or a family can have after assessing
the level of needs.
“For us
the problem is not to leave persons with disability in the institution to help
parents to stay at home that's why we want to use personal assistant” Zana
says. Jamie says that there are questionnaires used to assess the different
abilities of the persons: the ability to live independently, the ability to
move the ability to prepare food, the ability to wash themselves. “The
abilities are social indicators assessed by local authorities' social workers”
Linda sdds. Jamie underlines problems about the questionnaires filled to give
less money to the client. “In Lithuania the assessing system is changing and
now we use mini mental health test, and social skills and communication skills
test” Dana says. “Nowadays one of the big things are changing in Scotland is
that we are moving from a system where a social workers from a local authority
assessing the needs to a system where the social workers says this is the money
you get and now you can choose how to use it. “In Croatia we don't have enough
money to the assess procedure and the government give to the associations the
responsibility to decide and we have problems with who don't get the services”
Tomislav says. “You can become an enemy some people and they become enemy to
the others” Natalija adds. “There are also problems in Scotland that is a more
developed system where people have to fight and have to prove and have to be
assesses by people they don't know” Jamie says.
Felice
asks Zana what does she means for criteria. “When we write projects we have to explain
why we choose 50 person and not others. And if we can explain why we choose
this people we have a criteria. We must set some criteria” Zana replies.
A
criteria in this sense means being able to explain why a specific intervention
is used to address a specific problem. To understand the problems of the
families to analyse seems a good way to find out criteria of intervention. “Parents
in the interviews speaking about personal assistance ask for trained
professional able to address problems of communication” Felice says. Communication
represents an important area related to the personal assistance service and to
the training of staff.
We come
back to the first Lithuanian interview: the parents use a day care service for
ten hours a day but they don't feel to be helped. “I think is important to deal
also with the satisfaction of the client and with how the live these services.
The problem it's not only to build what we don't have but also to use something
that we have” Felice says.
We
underlines the importance of working in partnership with other stakeholders in
the care service providing. “The services for the basic needs has to be
guaranteed by the Municipality or by the state and have, other services has to
be financed for the 80% by municipality and for 20 % client” Dana says. “But
it's very difficult to define a way to organize services not depending just on
medical indicators. We have to use also other indicators” she adds.
To
understand what kind of services can be useful for the families and the persons
with mental disabilities is not taken for granted. The construction of criteria
of intervention seems still ongoing in each country.
“When I
go to the travel agency to book some excursion for our members they offer just
rehabilitation centre”. “They do not understand that people with disability
maybe wants to see some arts” Zana says.
“A
physical disabled persons within the independent living philosophy can choose
his personal assistance and here the parents can choose. But if they have
severe form of disability they do not never know what they want. That's why we must set up criteria” Zana
says.
This is
why parents ask for professionals helping them in understanding what do their
children want this is the problem of communication” Felice says.“If you are
professional you can understand emotions” Dana says.
How to
involve in active way the person with mental disabilities in the construction
of the service they use? An important resource can be to understand the
relationship between the person with mental disabilities and the family members
involving the whole families in the setting up of the services.
Talking
about intervention criteria bring us to consider how to engage and how to train
a personal assistant. “In the first meeting I said that the best personal
assistant in practice we know is the first or second neighbour” Tomislav says.
“Maybe be, people who live close to it” Natalija says. “But this can be
difficult in Rome where parents denounce a distrustful relationship with their
local community. Probably for your context it is different”. Felice comments.
“Yes it's
different. For example in Zagreb they set criteria for teaching assistant: they
must have pedagogical degree. I can't applied this criteria in Vinkovci or in a
village near to Vinkovci because I don't have people like that and I don't have
money to pay for that. So the criteria for big city and rural area are very
different and not all the disabled person live in Vilnius or Rome or Vinkovci
or Glasgow” Zana says. “We have like a similar situation in Scotland
that is rural as well and in the north we have people living in villages and we
can have the same problem in recruiting staff to work there” Jamie says.
“We
always organize training for every new personal assistance: they come to us to
have special training after the school. But they are chosen by the person with
physical disability. The member of my organization came to me and say I want
him to be my personal assistance. They
come to us for the training and go to work” Zana says.
“So the
problem regards how can set criteria for the personal assistance for persons
with mental disability” Felice says. “Yes who does decides?” Zana replies. “the
lady in the video she would be able to decide” Jamie says. “With person with
very complex need or not verbal communication you can ask a member of the
family or a social workers to understand what the person like to do and then
you can interview the possible social workers to understand if is the right
person” Linda suggests.
A general
difficulty in defining what are the objectives of the personal assistance
service in the field of mental disabilities is highlighted. The personal
assistance service in the field of intellectual disabilities suggests a shift
from the basic assistance (assistance to wash, to clean etc) to new form of
assistance: an assistance to communicate, to build social relationship, to be
productive and carry on a social function. In this regards the most important
issue seems to understand how to train
staff able to give this kind of assistance.
Finally
at the end of the meeting we consider the importance of the recovering the
histories of the families within the welfare system. “The clinical card do not
give that kind of information cause is much more oriented to the medical
treatment. But this is something organization like our can do can do as we have
an histories with this people. We work together with them for many years we
know what are their problems” Felice says. “We would develop a social model to make
a map or a path from where the person have started to where the progression is
going” Linda says. “We would write something that can help us bear the
intervention” Felice says.
The
meeting finishes.
