Policy on independent supported living for disabled persons in Malta

Abstract

Although since 2000 the Government embarked on a systematic process to establish building blocks upon which an independent supported living policy framework can be built, this report concludes that to date there is an absence of a cohesive and universal policy for independent supported living for disabled persons towards which the primary stakeholders – that is the Government, Non Government Organisations, the parents and families, and, more importantly, the disabled persons themselves - are working towards to. There is also an absence of data relating to all aspects of the disability sector – data without which good policy design is difficult to attain.

Indeed, the absence of such a cohesive and universal independent living policy framework is, perhaps, best attested by parents of disabled persons who fear what the future holds for their children as they become frailer or pass away.

Through Aġenzija Sapport, the Government in the 2000s adopted an aggressive process to establish independent supported living placements for disabled persons. The focus of Aġenzija Sapport was, primarily to set up state run independent supported living home placements as well as in partnering with church foundations in this regard. There is now a need for a reform of the enabling framework to facilitate, support and simulate supported independent living for disabled persons.

There is also a need for reforms to the Social Security Act, the Income Tax Act, or to the handling of Capital Tax Gains of income generated by private trusts established by parents for their disabled children and other policy measures directed to encourage individual parents to finance through their savings the placement of their disabled children in an independent supported living environment.

Indeed, the Schedule V of the Social Security Act continues to penalize a disabled person who has means beyond the limited thresholds set – means which the disabled person could be receiving through a private trust.

In short, there was no policy-driven change directed to support families to invest in the well being of their disabled children by setting up independent supported living environments for them; and in doing so removing the quasi total dependence that the fulfillment of such an aspiration is solely dependent on a placement, within the Government’s small stock of independent supported living placements, becoming available.

The phrase quasi total dependence is carefully chosen. As this report shows an independent supported living environment with a basic level of care – 2 hours of individual personal assisted support – is estimated to cost annually €17,854 whilst one with an intensive level of care – 12 hours of individual personal assisted support – is estimated to cost annually €44,910. This report concludes that, even at the most basic level of care, private financing of an independent supported living placement for a disabled person, under current legislative conditions and constraints, is beyond the reach of most families.

Therefore, for a total financial budget of €4,097,000 between 2002 and 2006, the Agency invested in 441 independent supported living placements. This compares strongly with the investment in 16 independent supported living home placements since 2007, where the total financial budget for the Agency - excluding a constant expenditure base of €3,469,000 for Day Services – stood at €12,080,000.

Thus, the Agency between 2002 and 2006 opened a residential independent supported living placement for every €93,114 of the budget allocated to it when compared to an independent supported living placement for every €755,000 of the budget allocated to it excluding the Day Care financial estimates) since 2007.

The report presents the following recommendations with regards to the building of a robust and sustained cohesive and universal policy framework for independent supported living for disabled persons.