‘I hope my daughter dies before me’

I received the following haunting piece from Philip Rizzo and I have decided to publish it in full:

'I am the father of a Down's-suffering 'adult' daughter, Philippa, who, despite being 35 years old, does not vote; instead, I, her step-mother, two brothers and two aunts/uncles (at least 5 persons) vote in her interests.

'According to the latest Census (2011), Malta and Gozo are home to 27,400 disabled persons, of whom 4,500 are intellectually-challenged, 6,000 suffer from poor mental health while 17,000 others are burdened with physical challenges, including those with lack of sight or hearing.

'What do parents/relatives of the disabled think about the conditions that their offspring or siblings have to face in their every day life in this Christian country?

'1. At birth or upon assessment there exists insensitivity or lack of knowledge about disability within the medical profession. What should be said immediately to all parents of such 'angels' is that their offspring will eat oranges and bananas like all others and that they will on an ongoing basis 'spray' love and joy towards all those who welcome them into their own already-challenging every day life.

'2. Between the age of 0-3, government should provide 'early-intervention' therapeutic services on a frequent and regular basis; appointments at the CDAU distanced by intervals of 12 months or more are wholly inadequate and unacceptable in these times.

'3. Between the age of 3-16, government has done the sector proud by providing hundreds of Learning Support Assistants (LSAs) to individuals; an inclusive educational system is, however, only truly inclusive if it also offers free occupational therapy and physiotherapy so that those challenged can also participate in scholastic and recreational activities.

'4. Above the age of 16, an insurmountable brick wall hinders advancement to tertiary education; indeed, while government provides many hundreds of LSAs in secondary education there are only four students at MCAST who have an LSA. It comes as no surprise; therefore, that 96% of our disabled are unemployed. If government boasts of quasi-full employment nationally, why are there only 4% in the workforce? And why is there so much tokenism and disrespect towards the dignity and rights of the disabled by their employment in low quality jobs? Is a person who lacks a left arm only fit to serve as a telephone operator?

'5. Above age 30: Only around 1,000 with disability are in employment despite a law, The Disabled Persons (Employment Act) - Chapter 210, which requires that 2% of all gainfully-occupied - that is some 3,000 disabled - should have full time jobs. Why is there no enforcement of a law that has been in force for almost 50 years?

'6. Between 35-61, when parents are more than likely to have either died or be unable to care for their beloved weaker children on a 24/7 basis, should the State not provide residential units in the community where such citizens can live semi-independently? Government has over the past 10 years provided a total of 114 such residential placings, wholly inadequate for the estimated 2,500 intellectually-disabled who are expected to lose their parents or guardians over the next 10 to 15 years.

'Overall, the unfairness towards Malta's weakest is such that I am merely one amongst almost 50,000 mothers and fathers of a disabled offspring that wishes that my child would die before I do; indeed, I regularly pray that Philippa, who is only 35 years of age, will die before me who has recently reached retirement age!

'If things do not change, all I can do is instruct that the headstone on my grave should read 'Philippa Rizzo's father... N.R.I.P.' [NOT resting in peace]'.

Evarist Bartolo is shadow minister for education.