“We don't want agencies! Let us choose our own assistants”
(from a sign held by Raffaele Pennacchio of the 16 Novembre
non-profit organization during a sit-in)
During my
years at university, the extra costs incurred by my disability (my assistant’s
wages, weekly transport between home and university) were mostly covered by my
parents. The paltry amount conceded by the local authority wasn’t
granted directly, but was converted into a service to be provided by a local
agency. Nothing out of the ordinary in Italy - except the service was
terminated abruptly after a year because the local authority suddenly realized
I was too big a cost for them. And the reason for this is that providing
services through an agency entails an incredible waste of money: most of it
(and I really do mean the vast majority of the local authority’s funding) went
to the agency itself, to cover administration and service delivery costs. If
they had paid it to me directly, I could have used it to employ my PA directly
for all three years of my university course! Instead, we then had to keep
paying her out of our own pockets, simply because giving the funding directly
to the users who need it seemed - and still seems - to be unconceivable.
Elena and I found ourselves in the same shoes when we were
granted the “Home Care Premium”, a benefit for non-self-sufficient people with
disabilities who are the dependents of state employees. Here too, there was a
catch: the allocated funds were not granted directly to the beneficiaries, but
went through an agency that used them to provide two months of home care in the
afternoons. At the end of the day, however, this meant that the agency’s cut
was over half of the total benefit - we were shocked to realize that if it had
been given to us directly, for the same sum we could have employed two PAs
directly for at least four months!
In my city (but I’m afraid that it’s not an isolated case)
there is a real racket in place, meaning that funds for disabled care cannot go
directly to the beneficiaries, but must necessarily pass through agencies and
cooperatives, who all take their cut.
Sadly, this also subtly implies that disabled people and their families
are incapable of managing public money independently.
The services supplied through agencies can also come with
absurd limitations. In my city, for example, users can travel in the educators’
cars (“educator” is the pompous and vaguely offensive name the care assistants
go by) but the educators can’t drive the users’ own cars, thus creating
enormous difficulties for people who can only travel in their own
specially-adapted vehicle. The educators are also unable to accompany users
outside their home town, as if people with disabilities never needed to travel
anywhere else. Then there are the hateful assessment forms and monthly reports
that the educators have to fill in. These contain absurd questions about the
user’s cognitive and relational capabilities, which not only trample all over
privacy and dignity but are not even applicable if the user only needs
assistance related to motor impairment. (Or maybe they have to set the tone and
act as an educational service to somehow justify the fact that they always take
the biggest slice of the pie for themselves?)
As the cherry on the cake, during a recent local
demonstration against benefit cuts for people with disabilities, the managers
of the main care agency in town told their staff (educators, who are also
affected by the cuts) not to participate in the protests, not to support the
families concerned, basically to have nothing to do with it. Now you tell me…
Isn’t that a racket? It’s part not only of the all-too familiar Italian pattern
of senseless waste and profiteering, but also of the patronizing top-down
perspective of disability that continues to dominate. The (very narrow) slice
of welfare reserved for people with disabilities in Italy is distributed far
more as services than as direct benefits, but services, however they are
differentiated, will never be able to be meet the requirements of all their
recipients.
Disabilities come in many forms and produce many different
needs. To give just two examples, some people are unable to walk long distances
and only need help in doing the shopping, going to the post office and so on,
while others are completely non-self-sufficient and require ongoing assistance.
Some might only need a few hours in the afternoons, while others need support
only at night. In Italy, very few non-self-sufficient people are provided with
enough personal assistance to enable them to lead a dignified life with an
adequate degree of independence from their family - unless they’re paying for
it out of their own pockets. A standardized, restrictive service such as that
provided by the agencies is a poor substitute. What’s really needed is personal
assistance available not only (and not necessarily) in the mornings and
afternoons, but also in the evenings and at night - and it doesn’t always have
to be through qualified staff.
In fact, while specialists are needed for some conditions
(you can’t ask just anyone to change a catheter or help an autistic child with
their homework), Elena and I, and indeed most people with disabilities, don’t
need “expert” care (even if vested interests would have you believe otherwise)
and all that’s required is patience, listening skills and a willingness to
learn. You don’t need to have studied anything in particular to lift me from my
wheelchair or take me to the toilet. You don’t need a specialized course to
prepare a snack for me, drive me to the city center or hand books out when I’m
studying. What you do need is some degree of natural empathy, sensitivity and
intelligence, but that’s another story.
The ideal
solution (although in Italy
The principle is very simple, aiming for the full
integration of all by eliminating both architectural and cultural barriers. It
hinges on self-managed personal assistance, obtained through direct funding by
institutions. This is completely different from the standard care provided by
social services, as it’s no longer the service provider which decides when and
how to provide the service but the beneficiaries (the people directly
concerned) who specifically request a service and detail their needs (how,
when, where and by whom). In other words, the disabled person is no longer a
passive recipient of care but is an active subject, in essence acting as an
employer. The perspective has thus shifted from the patronizing medical model -
that has far outstayed its welcome - in which people with disabilities have to
be “taken care of” and must adapt their needs to standardized services. Under
the new system, benefits are paid directly to the beneficiaries, who can use
them independently in the way that works best for them, thus obtaining a
personalized service tailored to their specific needs.
The problem
is that in Italy this has
not yet become established practice (as it is, for example, in the UK
Independent Living not only offers a long overdue change of
perspective, transforming people with disabilities from passive objects of care
to proactive participants, but also enables public money to be used in a
forward-thinking way without waste or profiteering. Organizing personal
assistance in this way offers clear savings in comparison with management
through agencies: direct provision of beneficiaries with the amount needed to
cover their assistants’ wages and taxes enables admin and management costs to
be avoided. The beneficiaries themselves will be responsible for selecting, training, legally employing, and paying their own assistants, without any third
party intermediaries. It follows that a far higher number of hours of care can
be provided for the same cost to the public purse. The same is, of course, also
true for nursing homes: even ignoring the fact that living in such facilities
is undesirable and speaking in purely economic terms, it is evident that
self-managed care costs much less. In the newspaper Corriere della Sera, FrancoBomprezzi suggested comparative figures of about €50,000 per year for
self-managed care against €90,000 for residence in a nursing home.
Much has
been done to put these principles into effect, but a lot of work is still
needed. Independent Living projects are ongoing (although they don’t
usually cover all needs) in many regions of Italy and more are being organized,
but unfortunately it’s necessary to fight tooth and nail to get anywhere and in
some regions not a cent has yet been seen. As things stand today, wheelchair
users who are completely non-self-sufficient do not have the right to choose and
employ their own PA as they would like (unless they have an independent
income). In fact, they’ll be lucky if they don’t end up living in an
institution.
This is largely a problem of mentality. In most cases people
with disabilities are impeded from managing the (little) public money they are
allocated and thus becoming their assistant’s employer. Perhaps it’s too
strange to think of a tetraplegic employing, paying – and maybe firing – their own PAs, isn’t it? Or of someone with muscular dystrophy
sifting through applications and worrying about paying their employee’s income
tax. Because that’s not the view of us that the media chooses to spread.
Instead, we are resigned and melancholy, or gloomy, hateful and mean, or at
best joyful and brave and “full of strength”. But for sure, we don’t have to deal with
contracts, payrolls and Christmas bonuses. And naturally, the parents of a
severely disabled child should be grateful for the assistant sent by the local
authority for four hours a week. After all, in the mornings grandma’s there to
look after him. And his mum only works part-time now - and of course she didn’t
mind having to give up her career, she would do anything for her son. Too bad
that this son will grow up and become a man who won’t actually want to be a
full-time burden on his mum. And his home will start to feel too cramped, and
he’ll want to work or go to university.
And there
will come a time when to achieve all this, he will want to become an employer.
Translation: Marie-Hélène Hayles
