Monday, March 21, 2016

Funding, not services. Independent living vs. care agencies

“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 it’s still largely to be put in practice) has already been found by the only ones really capable of finding it: people with disabilities themselves. This solution is embodied within the principles and practice of Independent Living. According to the philosophy of this international movement, which arose in the USA in the Sixties and later spread to Sweden and the rest of Europe, people with disabilities are the best experts on their own needs.
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, where people with disabilities are eligible for so-called “direct payments”), and the various local authorities are merely “requested” to provide funding. In practice, this results in indifference and inertia and produces social workers who are less informed than the people they are supposed to be assisting (although that’s nothing new). The reality is that you can’t get funding without a fight to the death (in fact, we still haven’t obtained anything). As usual, however, some regions are one step ahead. Florence grants up to 3000 euros per month for Independent Living projects (hats off to Florence!) -  while that might seem quite a big amount, it’s absolutely necessary for anyone who is completely non-self-sufficient. This sum will enable you to pay a living wage to two personal assistants (the minimum needed to ensure adequate shift changes). The principle is that any user can decide how to manage the assigned budget, and the Agencies for Independent Living offer legal assistance and expert advice provided by disabled staff.

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

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