Mentally handicapped need their rights secured

It is a shocking fact but it is nevertheless true. Some parents of mentally handicapped children in Ireland are now privately advising prospective parents to avail of amniocentesis to determine if their child is mentally handicapped. If the results are positive, they are suggesting that parents consider all options, including termination.

This regrettable scenario has resulted because successive governments have failed to enact legislation which would secure the future for mentally handicapped children and their families. It is also indicative of the despair to which so many families have been reduced.

From the moment of birth of a mentally handicapped child, families become objects of charity. They must grieve for the loss of the child they were expecting and come to terms with the caring for the disabled child for the rest of their lives. This dependence will only increase as the child becomes older.

For most families, the realisation that they have a disabled child is only the first of many battles. There are no rights for mentally handicapped people and their families. They must accept services based on charity which is at the discretion of their local service provider.

Most services are inadequately resourced. One has to ask how much longer must this indignity endure? A recent case taken by a family who wanted to care for their mentally handicapped child at home following alleged medical negligence was settled for £1.7 million. This was the estimated cost of caring for the child at home for the rest of his life. It is also a conservative estimate of the money families are saving the Government by caring for their mentally handicapped child at home. The cost in real terms is inestimable.

For many families, they never have a holiday because there is nobody available to look after the handicapped child. They are lucky if they receive a rare weekend break when support services take the child for a respite break. But there is even greater frustration over what will happen when the parents eventually die. Parents of mentally handicapped children have always hoped that the child dies before they do. The harrowing reality is that people with mental handicap are outliving their parents, which means parents are forced to live permanently with the nightmare scenario of what happens when they are gone.

There are hundreds of widowed parents well into their 80s clinging on to life for fear that their sons and daughters will end up in some institution after they die. There are already 1,200 mentally handicapped people living in Dickensian conditions in these institutions. For those unfortunate families, it is too late. The end of the line is the disgraceful institutionalisation of defenceless mentally handicapped people who have no more living family members as advocates. All families go through life dreading this prospect. Most do so in silence.

Nervous breakdown, prescription drug addiction, alcoholism, marital breakdown and early death are the inevitable results of this desperate predicament for many families who do not receive adequate support.

Family life is dominated by the disabled person. When they sleep, eat or go out is determined by the needs of the dependent individual. Holiday plans must be curtailed to these needs, which means most holiday options are out of the question. Many families are at breaking point. But their efforts to highlight their plight have fallen on deaf ears. As recently as last May, the Minister for Health announced that he had no plans to introduce legislation to secure the future for people with a mental handicap.

The message to prospective parents in the current climate is stark. The prospect of having a mentally handicapped child in Ireland means you are facing into a life of uncertainty, neglect, misery, isolation and, ultimately, institutional care for your child should anything untimely happen to you. The message from some parents already suffering this plight is, don't bother. I would ask those who might condemn this stance to question what they are doing to eliminate this reality. Listen to the hearts of these parents and not their words. Sense the anguish and isolation.

This is not about abortion. This is about shattered dreams, disillusionment, despair and desperation. It is a cry from parents who are simply unable to deal with the overwhelming burden of caring for their much-loved mentally handicapped child. Having a handicapped child is what every prospective parent worries about, and it could happen to any couple. It is not sufficient to be thankful that your own child is not disabled. All people have a responsibility to support the legislative changes which are so badly needed. We can attribute the current appalling predicament of so many families to our short-sighted politicians. The absence of legislation and strategic planning has created the problem. Funding for mentally handicapped services has remained static in the current booming economic climate.

This indicates the priority given to mental handicap in Ireland by the people in power. Civil servants may present figures on how much they are spending on mental handicap. What they need to account for is why people with a mental handicap have no statutory rights to support services.

A parent of a mentally handicapped man in his 40s who was recently widowed lost her Carer's Allowance because she was now receiving a Widow's pension. She was informed that she was only entitled to one pension. Not only did she lose the help of her husband in looking after their dependent son, the State reduced her financial ability to do so.

Ireland cannot be considered a civilised nation until it takes proper care of its most vulnerable citizens. While there is money in the coffers for extravagant houses in the Phoenix Park to accommodate visiting dignitaries, it is evident that people with a mental handicap are not a priority and their families must suffer on.

Dr Mark Harrold is a senior clinical psychologist working in the area of mental handicap