About 40,000 (disabled) people at a crossroads

Mr Borg told me that he had to go to work abroad to be able to make the necessary money to pay for the assessments of his disabled son. He said that services are still lacking in such a drastically worrying way here in Malta. He told me that it's either the Maltese consultant's way of doing things or nothing. He wanted to use an Italian agency because, through his research, he believes it is the best and most suitable agency for his physically disabled son - but he was not provided with the subsidy as the health authorities said it's the hospital "they" think is the best that will be on offer - so much for parental involvement!

Sandra is desperate for a service. She feels that all the services are just designed around the agency's needs rather than individual aspirations. She says that there was a lot of improvement over the years when it comes to social inclusion, but somehow things have dried up recently. She said that she is willing to make use of the services available but only if she is involved in the design of that respective service - otherwise she will not accept being supplied with expedient services that she needs to adapt to (once again).

I have been involved in this sphere in some role or other for over 20 years - and disability issues have never gone so desiccated. I can't stand the silence anymore! The disability agenda has gone disturbingly and distressingly voiceless these last years.

What has happened to the grinta, liveliness, enthusiasm of the National Commission Persons with Disability (NCPD)? Has it become just another government department engrossed in running the day-to-day chores rather than promoting and instigating debate, encouraging innovative ideas, motivating the development of new services, agencies and organisations to push for so much needed development? In the 1980s and 1990s this commission was literally "on fire", but has now been turned into a simmering candle. Its presence in civil society is the occasional news release on positions that I am very dubious whether they would have been debated sufficiently with disabled and parent activists. Hardly any public fora take place. This commission, when having chairman Lawrence Gonzi leading it, was on the ball, upbeat, provocative and proactive. I'm not too sure that this candidness still exists - NCPD is toothless. Status quo when betrothed with this minority has a horrendous effect!

How organised is the disability movement in Malta? What happened to the Maltese Council for Disabled People, the Maltese Disability Studies Group and the Federation of Organisations of Persons with Disability? It's all gone so worryingly hushed. I am cognisant that disabled people and their families are very fretful and flustered with the whole situation. There is little representation or dialogue and hardly any sense of lobby group and activism.

Agency Sapport. Where is the strategy development and synchronisation that this organisation is responsible for? Plucking holes in a family's multi-faceted needs is really not what giving a comprehensive service is about. How could this organisation be content with providing an hour of service a week here and there to a "single parent" who has a son with a severe impairment? What haughtiness makes us believe that a couple of hours a week keep people in the community? How come this agency is under-spending its budget when so many services are required? To me, this organisation is parched. What a far cry this agency is turning out to be from its original forecast!

It is high time to realise that we are at a crossroads. It is time to think profoundly and tangentially. We need to draw away from a plethora of unconditional negativity. It's either now or never.