Nothing about us without us
The Labour Party is ready to guarantee when in government that every person with disabilities who, for some reason, needs support to live an independent life shall be provided with a place to live in the community together with the necessary care services.
The proposal came as a relief to many families who live with the experience of disability every single minute of their lives. They apply their full energy and a lot of creativity to have the best living environment for their family, especially one that meets the needs of the family member with disabilities.
Over the years, there were a number of policy measures that were taken in favour of people with disabilities. These included the pension for the disabled, the setting up of day centres, the Equal Opportunities Act, Aġenzija Sapport and the National Commission for People with Disabilities.
Social policy in the area of disabilities evolved and shifted from one of doing things for the disabled to one where things are done by the disabled and with the disabled. As the disability motto goes: Nothing About Us Without Us.
However, in spite of the legislative and institutional developments that took place, the parents and the people with disabilities will tell you in no uncertain terms that doing the normal daily chores that every person takes for granted is, for a person with disabilities, a daily struggle. People with disabilities face barriers to do ordinary things and they have to invest extra effort and time to do the basics.
Some difficulties are directly related to the condition and, therefore, they rely on external support to wake up in the morning and go about their needs. But other barriers are the result of an environment that lacks sensitivity to the needs of the disabled such as failing to provide an inclusion coordinator in school, failing to give a child an individual curriculum programme, making it difficult for a parent to enrol a disabled child in a kindergarten, inaccessible buses, inaccessible public and private buildings, failing to provide a place at adult training centres, broken or blocked sidewalks and downright ignorance of how to adjust a public or a private service to match the particular needs of persons with disabilities.
The moment someone starts limiting what a person can or cannot do, to legitimately improve his/her life situation, s/he is immediately placing that person in a vulnerable situation and, therefore, at risk of poverty and social exclusion, unable to enjoy what is available to other persons. This is discrimination.
Article 14 of the European Convention on Human Rights states that the enjoyment of the rights and freedom set forth in the charter shall be secured without discrimination on any ground. Therefore, member states cannot discriminate against a person with disabilities by omitting to enable him/her to rise above the disability, live independently and enjoy the benefits that society has to offer its citizens.
The Council of Europe report Access To Social Rights lays down that special attention needs to be given to access to social rights such as housing, because people in vulnerable situations may run the risk of being excluded for reasons connected with health and disability, among others.
One has to bear in mind that denying access to one’s right, such as housing, may impede access to other rights and, therefore, push the person into a spiral of factors contributing to poverty.
In fact, while the report advocates an integrated strategy based on a combination of policy measures, which complement and build on each other, a major policy guideline is the need to ensure access to social protection, housing and local partnerships.
Therefore, providing people with disabilities with the real possibility to be able to live in the community, where they have lived all their lives and where they have built relationships, whether their parents have departed or not, is nothing short of securing a social right to inclusion for people with disabilities.
In short, this is what parents of people with disabilities have been requesting for quite some time. They might have not articulated it from a rights perspective but, in their hearts and minds, parents wanted their disabled children to continue living with dignity in the same surroundings and level of comfort and care that they would have provided for many years. They do not want charity or sympathy but a clear commitment by the state to ensure that their children will continue to have a quality of life in the community, whether they are around or not.
The proposal is universal in nature, that is, it will cover all those who shall need this service. However, it also acknowledges the wishes of certain parents who would like to invest some or all their wealth in the well-being of their disabled child. For this reason, the proposal includes the support for trusts, where a family or families can get together and, through a legal document, set forth how they wish their assets to be used after they would have departed this world.
Fiscal measures are also included to incentivise parents who wish to opt for this model.
I believe that the role of the government in this respect is to ensure the good governance of the trusts, the accountability of the trustees and the monitoring of service standards and service delivery. This is important for parents.
Such facilities in the community can take the form of joint ventures with the private sector, the voluntary sector or the Church.
This approach is a milestone in the development of service for people with disabilities but also for civil society. Civil society is able and wants to be more engaged in social projects and will have a critical role to play in service delivery in the years to come.
It is time that we mobilise all the positive forces in society and capitalise on our strengths. While, on one hand, the government should always have the prime responsibility for the welfare of its citizenship, on the other, it should not be the be all end all of our well-being.