| |
Adult
life and Down's syndrome *
Notes for a reflection
by Federico Girelli; appeared
on Sindrome Down Notizie, 2002, n. 3, p. 23.
In
order to identify the factors characterising adult life
in a person with Down's syndrome, I believe we ought to
try and focus on when and how a person with DS becomes "adult".
It is a matter of understanding the meaning of living as
an "adult" and, above all, what can be done to
guarantee the best "quality of life" to an adult
with DS. I will immediately get to what I think the point
is: you do not improvise to live as an "adult".
As everybody knows, every goal achieved by our dear ones
is the conclusion of a long process down to the highest
commitment by them and by those who assist them. As far
as employment is concerned - an inescapable issue as we
talk about adult life, though far too ample to be fully
discussed in this article - what I'm eager to remark is
how important it is to focus on 'labs' as a moment of transition
between school and work. Labs may indeed be a solution for
those people with DS who do not usually know how to actively
spend their time after compulsory school and specially for
those who do not have, nor can they have, work prospects
because of their objective inability to attend work activities.
A great experience in this direction, at least in Rome,
was that of "Cartallegra" ["Cheerful Paper"]
Lab where, apart from learning to work with paper, one could
join yoga, theatre or gardening lessons (unfortunately its
activities ended in 2001 for lack of funds. Nevertheless,
the people attending the lab could join new working contexts
where they could keep developing their attitudes).
Anyway, in order to start off people with DS in a job it
is not sufficient - for instance - that they are 30 years-old
or that they are adequately able to express themselves;
it is also necessary that they have attained a certain sense
of responsibility, that they can tell a wage from pocket-money,
and that they want a wage instead of pocket-money; they
also have to be able to allow somebody else to tell them
what to do and acknowledge their authority; lots of things
which we had better not take for granted even for people
who do not have an extra chromosome. So let's welcome the
Course of autonomy for adolescents with DS held in several
sections of AIPD [Italian Association of People with Down's
syndrome], or analogue experiences in other organisations,
and also the "Adults' Club", because unfortunately
the people with DS of thirty or more years old didn't have
the same opportunities when they were fifteen or sixteen.
In any case one feature seems important to me: this type
of activity is advantageous not only for the people with
DS but also for us relatives (I don't say parents because
I am a brother), because it is an occasion to find real
support in facing problems of adult life. For instance:
once boys/girls wish to go out alone, they also want to
use public transport, and since they are adult and maybe
the oldest sibling, they also want their own house keys
which they have seen the younger siblings using for a long
while. The way things are nowadays I realise that these
requests might take a parent by surprise. Thus here intervene
operators to verify the person's grade of autonomy and if
it's the case to empathetically reassure the parents. Since
growing up implies risks, I think the brothers and sisters
of people with DS may be a valid support for the parents
especially when it is necessary to face the risks I mentioned.
And I don't say this to overrate the siblings or misjudge
the parents, whose experience is not to be doubted; I just
want to state that siblings have a different viewpoint coming
from their "neutral" position which prevents them
from considering their brother or sister with DS an eternal
not grown-up kid. On the other hand, the more abilities
people with DS achieve, the better they live and above all
the better they'll live "after us". It is not
possible to talk about every implication of this fundamental
problem, but I would like to individuate at least two aspects
deeply affecting the "quality" of adult life:
the so-called "residential theme" and the main
innovations related to the instruments of protection provided
by the legal system. Problems concerning a housing solution
for the people with DS without relatives or for the ones
whose parents cannot take care of them materially, for instance
because of advanced age, definitely need attention. In Rome
there is the Fondazione Italiana Verso il Futuro (Italian
Foundation Towards the Future) operating in this direction.
It comes from the experience of AIPD and has the institutional
aim to realise family houses. Actually the question does
not only concern who has no family but also the grown-up
people with DS who wish to live in a family different from
the original one. And here as well it is necessary to proceed
in steps: in Rome AIPD has created "Casapiù",
an experiment of a family house where adult boys and girls
only live for the weekend; then the Foundation, after creating
a weekly house called "Casa Girasoli" which has
now become a permanent residential facility, has opened
"Casa Fiordaliso" where boys and girls with DS
live together one week a month for two years before deciding
if and with whom they'll live out of their home. This way
the person with DS can adjust to the new reality and, above
all, has the opportunity, which should have all adult people,
to choose whether to live with their parents or to live
in another house, as usually happens. In this connection
the siblings are very important as they are the ones to
whom parents entrust their child with DS for the time after
they have gone. And in view of this circumstance it appears
even more significant that several siblings have started
meeting to share their personal experiences with their brother
or sister with DS. In fact, in the very interests of the
person with DS, it would be opportune to gradually learn
how to face those difficulties related to the condition
of having a disabled sibling instead of having to do it
abruptly, when perhaps your life has already been planned.
Besides, maybe siblings are the only ones who can fully
comprehend the wish of an independent and adult life.
As for the instruments of protection I believe that the
in itinere supporting administration draft bill, which has
already been approved by the Senate and is now being screened
by the Chamber of Deputies (nr. 2189), may open new perspectives.
The supporting administrator is an individual (like, for
instance, the sibling) who in our case would have to help
the person with DS manage a patrimony more self-consciously
than interdiction and incapacitation would allow. Besides,
the supporting administrator would mainly operate in the
economic administration without pervading the beneficiary's
life as it happens with the current tutorship system. The
new provisions do not repeal the older ones: the new system
would operate in accordance with the two already in force.
In my opinion it is a good opportunity for our dear ones
to have a more authentic adult life. I don't mean to be
too optimistic, on the contrary. In truth, my sister is
interdicted according to the laws in force and would not
benefit much from the supporting administration; nevertheless,
our duty is to come up to the expectations of every person
with DS, and not only to the ones who are related to us.
Therefore, I hope that the legislative procedure will come
to an end as soon as possible. Another draft bill worthy
of attention is the Trust for handicapped individuals bill
introduced at the Chamber of Deputies (nr. 2733). Without
expecting to be exhaustive, I take the liberty to remind
that the Trust is an Anglo-Saxon regulation which has not
yet been adopted by the Italian legal system; the only trusts
allowed in Italy are the ones introduced by the ratification
(nr. 364/1989) of The Hague Convention of 1985. Generally
speaking a trust is the assignment of goods or rights performed
by an individual in view of an aim. Such assignment consists
in transferring goods or rights to another individual, the
trustee, who is entitled to the property of the transferred
goods and pursues the aim appointed by who has given the
goods. As far as we are concerned, it would involve the
following individuals:
1. the settler who assigns the goods to the trustee;
2. the trustee (natural or juridical person) who acquires
the property of the goods and administrates them according
to the aim of the trust. Once again I wish to remark that
the main characteristic of this regulation is the "segregation"
between the goods of the trust and the trustee's patrimony;
3. the beneficiary who has the advantage deriving from the
constitution of the trust;
4. the protector whose task is to see that the aim of the
trust is effectively pursued; the draft bill calls them
"guardians of the trust". In short, the assigning
person gives the protector his/her own rights and authorities
towards the trustee so that the protector may exercise them
when he/she will no longer be alive.In comparison with the
instruments provided by the Civil Code the trust system
appears to be more efficient and less devious in taking
care of the disabled individuals after their parents' death.
Indeed, the parents may constitute the trust according to
this very aim. When the person with DS (income beneficiary)
dies, the aim and the terms of the trust cease, and the
goods of the trust are distributed to the final beneficiaries,
such as siblings, appointed during or after its constitution.
This kind of trust will be also subjected to an advantageous
tax regulation.
I believe that the different aspects I have shortly discussed,
as well as affectivity, of course, are ideally framed in
the well known film "A proposito di sentimenti"
["Concerning feelings"] realised by AIPD (Italian
Association of People with Down's syndrome) and the Fondazione
Italiana Verso il Futuro. The actors and actresses, especially
the most unembarrassed and capable, do not improvise: what
the film shows is the result of a work started long before
their present "adult life", when they have a fiancée
or a real job. Every time I happened to introduce the film
I always said that the girl telling how she helps in the
household must have burnt quite a few shirts before learning
to iron so well. Apart from the film I believe that it is
up to us to give our dear ones all the opportunities to
face an adult life at their best, even at the cost of some
burnt shirts.
Federico Girelli
Maria Claudia's brother
* This text is the updated version of Federico Girelli’s
presentation about “adult life” as Vice-President
of AIPD at the Conference of all associations dealing with
Down’s syndrome organised in Rome by AIPD, November
25th-26th 2000.
Publications
and reports
|
