Mr Mauro Farrugia
Malta small’s size lends itself ideal to implement changes; word travels fast, unlike the propensity to challenge the status quo. Along the years, Malta’s disability rights movement has been sporadic, often led by parents who placed most of their concerns on what happens to their sons and daughters once they pass away. The charity model was at the forefront, with the Church opening a number of larger residential institutions. Whilst a stance that was much needed at the time, when persons with disabilities were kept hidden from society, it remains a dominant perspective to this day, with institutions generally perceived as essential and beneficial.
Recognising the necessity of community life, early on in the new millennium, Agenzija Sapport – the national service provider for persons with disabilities – and a number of NGOs opened the first small group homes. Agenzija Sapport also started operating a small, yet crucial community service; a new concept at the time, with support workers assisting persons with disabilities in their own homes and communities, laying a strong foundation for the more recent developments regarding personal assistance services. The allocation of subsidies to engage a personal assistant started with the provision of direct payments. At the time, the number of beneficiaries was minimal. Nowadays, Malta has a fully-fledged scheme of financial assistance, called Independent Community Living (ICL), with over 300 service users, over 4 million Euro invested for this year by the Government of Malta, and complemented with a monitoring and support service. The ICL Board evaluates all requests referred by Agenzija Sapport’s Assessment & Intervention Services, and, depending on its decision, persons with disabilities are allocated subsidies to acquire personal assistance services.
Notwithstanding the paradigm shift, the current system is not without its flaws. Solicited comments by Dr Adolf D. Ratzka put forward last year highlighted several shortcomings: the process insufficiently entailing the involvement of merely one person with disability; a rather heavy emphasis on impairments and medical expertise; the appeals procedure lacking independence and the possibility of contestation in court; and the system expecting persons with disability to cover part of the costs.
So, how are we navigating the path towards truly making it possible for persons with disabilities to live independently in the community, whilst preventing institutionalisation and walking across a long road towards deinstitutionalisation? We are working on a personal assistance reform, with the eventual possibility of establishing personal budgets; not as a future goal, but as a current approach. Moreover, Malta’s 2021-2030 National Strategy on the Rights of Disabled Persons calls for strengthening personal assistance services, emphasising personal autonomy and individual preferences and needs.
Furthermore, we recognise that personal assistance is just one of a vast range of disability-related costs, which contribute to limiting comprehensive access to independent living. Our work is accordingly aimed to eventually set up personal budgets, renewed or updated on an annual basis according to the case, allocated in accordance with the pertinent assessments, and upon which Individual Support Plans are developed. This will, in time, allow beneficiaries to purchase support services through such funds, including personal assistance services.
Our aims are for the reformed personal assistance provisions to:
In order to achieve the above, the first step that we undertook was the creation of long-term opportunities for open discussions and consultation processes with persons with disabilities, including current ICL service users and other main national and international stakeholders; both public sector entities and civil society organisations. In addition, we are currently working on creating a strong legislative framework, specifically regarding personal assistance. Agenzija Sapport has also commissioned research regarding assistive technologies and artificial intelligence, to possibly promote their access and use through dedicated financial assistance.
Future plans include the launch of a public consultation document on the aforementioned reform, the assimilation of the personal assistant in the local workforce, and a public awareness campaign about personal assistance. Well-defined and comprehensive eligibility criteria will be developed, whilst system and process accessibility and transparency will be prioritised. The appeals process is also planned to be simplified and will operate under an independent mechanism.
Ultimately, the implementation of this plan shall ensure that persons with disabilities who are allocated a subsidy for purchasing personal assistance services, or, who, eventually, are allocated personal budgets, can make use of their allocated funds as they deem to be most suitable in accordance with their Individualised Support Plan drawn up with Agenzija Sapport, with consideration to their lifestyle, preferences and needs, including those related to supported decision-making, throughout their life.
Our first steps into this reform are seeing us through an ongoing dialogue, investments in transforming traditional schemes and services, and, apparently, an ever-expanding assortment of documents! We have embarked on a journey with no end in sight, however, perhaps, we should not aim for one. Do we face the quandary between words and action? Certainly; but focusing on enabling and empowering persons with disabilities to live independently as our core approach, ensuring their active involvement in all that we do, and implementing phased changes as we go along will surely pave the way for persons with disabilities to be empowered to expect, demand, and be provided with what is rightfully theirs.
Agenzija Sapport is the national service provider for persons with disabilities in Malta. Feedback by email on email@example.com would be appreciated.
The next article in the Disability Rights Defenders Newsletter September 2023 is: