Don’t ghettoise disabled persons

A friend in the caring professions who also has a physical disability has informed me about the grave concern and worry that is being felt by many in the local community of persons with disability. The cause of so much worry is a proposal that is being made in the electoral programme of the Labour Party.

I do not for a single moment doubt the genuine concern that the Labour Party delegates who voted for the electoral programme have for persons with disability. Dr Coleiro Preca, the Labour spokesperson on social solidarity, is well known for her care of all vulnerable persons. But nonetheless, the proposal of the Labour Party about persons with disability, instead of pointing towards a new beginning is a throwback to a past that by now should have been buried and best forgotten.

The Labour Party is promising that if it is in government it will carry out needed structural changes in St Luke’s Hospital so that parts of it will be used for persons with disability who cannot be cared for by members of their family.

The National Commission Persons with Disability has publicly declared its strong reservations about this proposal. The majority of the members of the Commission are persons with disability or parents of persons with disability. They have been showing their disagreement for the Labour proposal since 2006. In June of that year the Labour Party published a consultative document called “Poplu b’Sahhtu, Pajjiz b’Sahhtu.” The offending proposal was part of this document. The National Commission Persons with Disability make representations with the Labour Party to show its disapproval but its comments fell on deaf ears. The Labour Party decided to ignore the pleas of the Commission and go on with its plans and they are now part of its electoral programme. What is the point of holding consultations if you then ignore the opinion of the most important lobby on the subject in the country and when you fly in the face of best practices adopted in other countries?

On the other hand one notes that there are parents of some persons with disability who can be in favour the proposal of the Labour Party. They are genuinely worried that no one will care for their loved ones once they (the parents) pass away. But most probably this great fear that they have is not letting them see what is the best way forward for the best future of their loved ones. In such a situation it is understandable that security is placed before empowerment.

Experience, research and best practices all over show that the best future of persons with disability does not lie in initiatives that increase their dependence but in initiatives that empower them. For these last 20 years the Commission has been insisting that the institutionalisation of persons with disability is not the way of the future. The Commission has been lobbying all so that Dar tal-Providenza (which at the time it was set up showed the mind of a man with a great vision) and Mount Carmel would not be enlarged. The future for persons with disability lies in the expansion of community care, individualised and personalised services as well as the setting up of small communities.

The Church in Malta has taken note of the pleas of the Commission. The Dar tal-Providenza was not expanded and at least two small communities were set up at Zejtun (thanks to the generosity of Dun Ang Seychell) and B’Kara (thanks to the generosity of my ex-Latin teacher Canon Pirotta).

For fairness sake one has to point out that the Labour Party said that the modification of St Luke’s will take the form of residential units that will be like the other residential houses that already exist in the community.

On this point I make mine the comments of Rita and Kevin Vella from Mosta who wrote in The Times of February 11 on the subject: “Se we ask, why does it have to be at St. Luke’s? Is it so impossible to find other locations in the community where to open these houses?”

I appeal to the Labour Party to heed the advice that is being given by the National Commission for Persons with Disability and the Maltese Council of Disabled Persons and scrap its proposal about the institutionalisation of persons with disability.

Earlier this month the European Commission published a study called ‘Deinstitutionalisation and Community Living – Outcomes and Costs’. This study was carried out by the University of Kent (Tizard Centre) and the London School of Economics.

Introducing this study, Vladimír Špidla, EU Commissioner for Employment, Social Affairs and Equal Opportunities expressed her hope that the study will help Member States and stakeholders to transform services for disabled people from institutions to quality social services in the community.

The EU uses the European Social Fund (ESF) to help improve the life of disabled people. Among other things, the ESF supports projects to promote independent living, in particular community-based services for people with disabilities near their place of residence, including rural areas (for example through modernising systems and mechanisms especially staff training). It also supports replacement of existing closed institutions with quality services and housing within local communities (so-called 'de-institutionalisation').

The EU report says that services in the community need not be more expensive than institutional care once proper account has been taken of the needs of residents and the quality of care. The choice facing Member States is not therefore between inexpensive institutions and more expensive community services but between institutions that cost as much as community services to run but achieve poorer results, or services in the community that cost the same but do a better job.

Booooring

The ultimate insult that a journalist can receive is to be relegated to the position of a time keeper during a booooooooooring programme. I cannot believe my eyes when during the political broadcasts organised by the Broadcasting Authority I see well known journalists acting as time keepers and not as journalists. They manage a stop watch and smile while telling the speakers that their time is up. The ETC can provide better time keepers.

Journalists are there to question and challenge not to keep the time.