European law, domestic law, and our Constitution (the supreme law of Malta), afford equal rights to all, irrespective of ability, also stipulating that persons with different abilities are entitled to all the help required to lead as independent a life as possible.
The prime minister was so satisfied with the progress achieved by the Office of the Commissioner for the Simplification and Reduction of Bureaucracy that he disbanded this office. Thereafter, the principal permanent secretary boasted that no less than 1,250 measures had been implemented to this effect since 2013.
One would have expected that such an extraordinary achievement would have primarily benefitted those who are least equipped to navigate the labyrinths of the establishment. Yet, persons with disability are still requested to go through a veritable obstacle course, submitting to a variety of assessments and boards and asked to fill in countless forms every single time they apply for any therapy, care, aid, support, or medication.
This is hardly surprising, given the fragmentation of services. As a minimum, one has to navigate the ministries of inclusion, social policy, active ageing, social accommodation, education, and health, the Commission for the Rights of Persons with Disability (CRPD) and Aġenzija Sapport. Nothing shy of the eight circles of Dante’s Inferno.
Why make things so taxing and convoluted if these persons are simply applying for their basic right to a meaningful and fulfilling life?
What about basic human dignity? Some board members, specialists and therapists seem to totally underestimate the fact that the children they are discussing can comprehend their tone and attitude, if not the full implications of what is being said, causing them undue and prolonged distress.
Why should mortified parents be made to helplessly watch their children being humiliated, lest they are denied the benefit they are legally entitled to?
If a person or his loved one is entitled to disability benefits on the basis of a permanent disability, why submit them to a degrading annual medical board assessment? A short leg is as likely to grow back as Steward Healthcare is to voluntarily refund €400 million, and autism to disappear as much as our butchered trees to flourish.
Could there be the assumption that their time is not as precious as everyone else’s?
If a person is entitled to disability benefits on the basis of a permanent disability, why submit them to a degrading annual medical board assessment?- Louise Anne Pulis
Add more insult to the injury by advertising services while not allocating sufficient funds for them. In 2023, the much-flaunted personal assistant scheme was allocated €2.1 million. Given a €7,000 subsidy per person (which by the way is nowhere near the real cost of a personal assistant), this budget will accommodate 300 persons with disability. The 2024 budget allocated an additional €600,000, which will service 85 more, for a grand total of 385 persons.
All hunky dory before considering that there are 30,000 registered persons with disabilities. A conservative 25% of these, that is 7,500 persons, will require a personal assistant, equivalent to an annual budgetary allocation of €52.5 million. This means that if future budgets increase at the current rate (after all, we are all too often reminded that we have a burgeoning and resilient economy), not accounting for inflation and the likelihood of a heightened rate of disability, all these deserving individuals would be accommodated in the year 2107 – that’s only 84 years from now!
Needless to say, while awaiting the proverbial manna, one might, of course, need to be re-assessed a couple more times, to ensure that no permanent disability miraculously vanishes into thin air, provided you’re not out of the equation and six feet under.
The hardships are endless. The policies adopted are incompatible with the spirit of the law. The heartache, the pain, the anguish, the stress, the hurdles these people go through are neither justified nor justifiable. It is so unbelievably inhumane that they have to depend mostly on the kindness of charitable individuals and organisations.
It is devastating and heartbreaking that every year a circus is made out of human suffering in an effort to constrain people’s conscience to get them to dig into their pockets, thereby assuaging their guilt for pretending that these issues do not exist for the rest of the year.
All this inconsideration, all this inhuman and degrading treatment likely stems from a flawed educational system (be it formal and informal). Due consideration for others, courtesy and a sense of civic duty have to be taught and instilled from a very young age, be it at home, at school and everywhere else. Education imparts knowledge. Awareness and acceptance will eventually follow.
Louise Anne PulisOnly then will persons with different abilities and their families be afforded their due rights to guarantee their equality and inclusion.
Louise Anne Pulis, a lawyer, is a PN candidate for the 2024 MEP elections.