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Presentation
at the Conference of Associations Dealing with Down's Syndrome
- Milan, March 10th 2002.
Ladies and Gentlemen, my
name is Giulio Iraci. I am a member of the AIPD (Italian
Association for People with Down’s Syndrome) and councillor
of the Fondazione Italiana Verso il Futuro Onlus (Italian
Foundation towards the Future). First of all in the name
of the president of the Foundation, Mr Enzo Razzano, I would
like to thank and greet the organising associations for
giving us this opportunity.
I will try to be brief. In fact I apologise if some concepts
will only be mentioned. In any case I hope to be clear.
I am happy to be able to intervene on the residential theme,
introduced as usual very punctually by Anna Contardi, since
this is exactly what the Foundation has been occupied with
for almost five years now: residential solutions are its
institutional aim. In these last few years we have studied
and realised some projects to provide new answers to the
demands of autonomy and independence of people with Down’s
Syndrome, paying particular attention to questions such
as:
1) compatibility and welfare of the users – I apologise
for the highly bureaucratic term – of the residential
facility;
2) where possible, conscious and gradual detachment of the
person with Down’s Syndrome from the original family
core;
3) support to the families.
As many of you might know opening a living community is
not easy. At least when the individuals who enter are offered
a life highly dignified and serene. To be able to realise
this, a good organisation and good will, although being
necessary, even indispensable, unfortunately are not sufficient.
The greatest obstacle, sorry to say this but nobody will
be surprised, are the running costs. The other costs of
a living community derive mostly from the compensation for
the assistants (about 70%) but of course also consist of
the necessary expenses for the household and to meet the
demands of the residents. Even in the better cases, the
residents’ families cannot face these expenses alone.
The families need emotional and economic support. Some days
ago I re-read the report presented at the congress of November
2000 by a dear friend, Federico Girelli, ex vice-president
of the AIPD. In this report the world of the handicap was
asked to closely follow the Parliament procedure of bills
– which have not been approved – linked to legal
and fiscal institutions. Their support administrator is
the Trust, studied especially for the “after us”
– which I as a brother call the “with or during
us”. Another question was to meet the demands of who
wishes to destine his patrimony to the goal we are aiming
at. Well, the Foundation is an organism to handle exactly
patrimonies destined by the original family and is occupied
with the family member with Down’s Syndrome for life;
it is very attentive to every measure from the legislator
with regard to this. Nevertheless, we knew that when we
began and we are even more aware of it now after five years,
that Down’s Syndrome is too widespread to think of
solving the residential problem just through private donations.
Without the intervention of Public Entities it will not
be possible to meet the demands of all people with Down’s
Syndrome and of all families wanting to profit from a residential
facility. The laws that are already there involve local
administrations, above all municipalities, which may represent
a strong support for the families and the private entities
involved in residential projects. The municipalities are
obliged by law to dispose part of the municipal budget to
subsidise projects of family houses realised by private
people. I confess that as far as this is concerned I do
not know how the administrations work in the rest of Italy
– unfortunately up to now the Foundation has only
been able to work in Rome, and has encountered many difficulties.
Therefore I will tell you shortly how the municipality of
Rome operates concerning subsidy to the residential facility
and how this has made the realisation of our initiatives
possible.
Only the assignment of such a subsidy is bound to a convention
stipulated with the municipality. In accordance with this
convention the municipality commits itself to pay according
to the circumstances a ‘partial’ or ‘total’
share for every resident. In the case of a partial share
the costs of the community are covered for about 40%; in
the case of a total share the running costs are covered
almost entirely. It needs mentioning that in the case of
a total share the municipality reserves the right to withhold
70% of the income-tax return of the resident, leaving him/her
anyhow always a monthly sum at least equal to the minimum
pension. Although there are also very precise requirements
so that the convention, especially the one at total share,
is stipulated. These requirements have already been mentioned
in detail by Anna Contardi, they go from the appropriateness
of the house with regard to some technical criteria, such
as the size of personal and common rooms, the grounding
of the lighting plant, etc., to the choice of the residents,
for which the municipality usually refers to the lists of
the local health office. This ultimate requirement –
the choice of who will live in the community – is
the one to which the total share convention is bound to
a large extent. In short, the municipality who intends to
stipulate a total share convention reserves itself the right
to choose the residents of the community. And in theory
this prerogative seems legal, considering the economic compensation.
Nevertheless this in practice unfortunately frustrates the
gradual course, which I will describe now and which maybe
represents the most innovative aspect of our projects.
Until now the Fondazione Italiana Verso il Futuro Onlus
(Italian Foundation towards the Future) has realised two
community models, one with a permanent character, the other
with a temporary character. Allow me to make a short description
of the two models, and also to give you a concrete example
of how we have worked in these years.
Like I said the first community has a permanent character
and was inaugurated in 1999. It is called “Casa Primula”
and hosts four women with Down’s Syndrome between
40 and 50 years old, two of them have no parents. Originally
there were three residents who started this permanent cohabitation
after they got to know each other and after having lived
together for short periods. Then the fourth woman was moved
in, here also only after a gradual and attentive approach
both from the new guest’s and her family’s side
as from the side of the existing residents. The family house
is situated in the east of Rome, Balduina, in a flat which
the four ladies have arranged according to their taste and
which they consider their house. Moving in the fourth resident
has made it necessary to bring the number of operators from
four to five to obtain a rotation sufficient to guarantee
a continuous presence. Obviously this has increased the
running costs. Still, and here I return to what I said about
the intervention of the municipality, these costs are almost
entirely covered since for this community it has been possible
to stipulate with the municipality a convention for a total
allowance.
The second community model is called “Casa-settimane”
and has a temporary character. What does temporary character
mean? It involves a community that wants to be a kind of
passage between the original family unit and the one in
which one will live permanently once they have left home:
a fundamental pause both for the individuals with DS and
their families. On this basis a community called “Casa
Girasoli” was started at the end of 1999. It provided
for 2 years, stays of one week per month of a group of four
and another of five boys and girls of between 20 and 30
years of age. The aim was to let them become conscious of
the fact of being adult and living out of the family. The
groups have been selected by the technical staff of the
Foundation following criteria of compatibility and in basis
of the applications we have received. Again, the proper
weekly stays have only begun after some meetings and preceding
weekends of cohabitation, for which is used “Casa
Più”. This is a structure, from which Casa-settimane
is a direct emanation, invented and realised by the AIPD’s
section of Rome to offer to the boys and girls of age a
first example of cohabitation out of the family different
from the excursion or recreation stay. At the end of 2001
the first experiment of Casa-settimane was finished. The
preset objectives have been efficiently achieved: the project
has given to the participants and their families the chance
to “experiment” in the reality of cohabitation
and to elaborate for 2 years the emotional experience coming
from the real cohabitation in the structure with the assistants
and the group. In this way at the end of the experience
they were ready to take a realistic and conscious decision
about their future. After 2 years some of the participants
wanted to live together with friends in a permanent community.
Therefore soon “Casa Girasoli” will be transformed
from a ‘week’ house to a permanent community
where 5 of the 9 participants of the first experience will
live together. The choice of the five boys has been made,
taking into account the growth they have made in the course
of two years of cohabitation, their personal motivations
to leave the original house and the wishes and motivations
of the families. Some of the others do not feel ready yet
to leave the family. Others would like to, but in total
autonomy and independence, maybe with boy- or girl-friend
(there are studies going on about the residential possibilities
for stable couples who want to live together). Either way,
we are sure that for all of them, and for their families,
it has been an extremely positive formation experience.
Convinced about the project’s value, we are ready
to continue the project “Casa Settimane” with
new groups. Our technical staff is already composing the
groups and we foresee starting next autumn.
Thank you.
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