Parents of disabled children are overwhelmed by the amount of red tape they have to sift through in order to get social help and sometimes they don’t even get it.

I am worried about my health. Who will take care of my child if I get ill?

Katherine Farrugia, 34, whose daughter Luana, eight, suffers from the dandy-walker syndrome, which severely restricts her mobility, was recently told that she is not entitled to home help because she is “still young”.

Although the home care help is geared mainly towards the elderly, applicants with disabilities are also eligible.

Mrs Farrugia is worried that, without help, five years down the line she will not be able to take care of her daughter. “I’d go to war for my child and I’d do anything that is needed but the fact is that my health is deteriorating,” Mrs Farrugia said.

She is experiencing back problems, which worries her because her daughter gets heavier each year.

“Sometimes, it feels like we have to fight for our rights,” she said resignedly.

“Why put more pressure on parents like us? If we have the support we’ll do it for longer, if not we’re going to break down,” she said.

Irene Grech, whose son, Matthew, 12, suffers from a chromosome deficiency and is mostly housebound, said that most of the complicated process of bureaucracy made her want to give up.

“We are now in the process of getting a new wheelchair and the red tape of the Disability Commission just tires me out,” she said.

She does not have any help as her son grew heavier and she even had to give up her part-time job because she could no longer find anyone to childsit for her.

The lack of help makes her anxious not because she is cut off from the world but mainly for the little things: “Milk is not going to find itself on the table. What am I meant to do to go out and buy milk? Do I leave my son alone?”

The mothers clearly dote on their children and do not even consider the emotional toll their constant caring is leaving on them. “We’re keeping strong and do what we have to do,” they said resolutely.

“I don’t mind it because it is a labour of love but we are getting exhausted,” said Mrs Grech.

“Mentally, we never switch off thinking about our children. That is something that we have to take to the grave. But it would help if assistance was a bit more easy to come by,” she said.

They are aware that in Malta there is the concept of ‘help from the family’ but there is so much you can ‘expect’ from family and friends. “Everyone tells you that Malta is a small community and there’s a strong family bond,” said Mrs Grech. Both her parents are dead as is Mrs Farrugia’s mother. Apart from her family, including Luana’s siblings, she has to take care of her elderly father.

Their husbands are very hands on but have to work full-time to support the expenses. Although parents with disabled children are entitled to an allowance of €16.31 per week up to age 16, that is not even close to the expenses they incur.

“There are things like air conditioning that has to be constantly on because our children’s body lack the ability to adjust their temperature,” said Mrs Grech.

They also consume vast amounts of water. “Our children are like newborns. We need to constantly bathe them.”

“I tried to apply for subsidies on the service bills, and even got a letter from my paediatrician, but, once again, after a lengthy process, my request was rejected,” said Mrs Farrugia.

Entitlement to the energy benefit voucher may be acquired through a means test scheme that takes into account the annual income of the household. Others can resort to the humanitarian grounds scheme that only takes into consideration the medical condition suffered by a member of the household.

Entitlement to this has to be endorsed by a board specifically composed for such cases.