Amanda Haverty's parents believed their daughter was entitled to a full care package but are still fighting for what she needs, Michelle McDonaghreports
Three years ago, Amanda Haverty was a smart, beautiful, loving young mother with a successful career ahead of her. Today, she is blind, totally disabled, has the mental capacity of a small child and is living in a nursing home for the elderly.
Not only do her parents, Anne and Eamonn, have to face the daily heartache of seeing their daughter in this condition while they raise her five-year-old child, but they have found themselves under incredible financial pressure to cover the cost of Amanda's care.
It was on Monday, January 26th, 2004 that the Havertys' nightmare began. That was the day their daughter took a massive overdose in an attempt to take her own life, an attempt she just barely survived. As her father remarks, "The way she is now is worse than death."
Amanda has a first-class honours degree in biochemistry from NUI Galway and she had a successful career as a science journalist in London when she became pregnant. As she suffered from endometriosis, she realised that this might be her only chance to have a baby so she decided to proceed with the pregnancy against the wishes of her partner of 10 years.
She returned to her parents' home in Knocknacarra, Galway, where she was able to continue working for the same medical publishing company from home.
Her daughter, Lauren, was born on February 17th, 2001 and from the moment of her birth, Amanda doted on her child.
Her mother says: "They were inseparable. It was beautiful to watch. Mandy was always touching her and kissing her and telling her how much she loved her. She got such joy from her."
However, by the end of 2003, work had dried up, Amanda was having difficulty finding another job.
Her relationship with her partner, whom she still loved deeply, had broken down, according to her parents. She was under a lot of financial pressure although her parents helped out as best they could.
In September, she was accepted as a distance-learning postgraduate student in science project management by the University of Cardiff, and that New Year's Eve, she told her mother she was determined to get her life back on track.
However, on the afternoon of January 26th, Amanda left her daughter in the care of her younger Down syndrome brother and went to her room where she took an overdose which her parents accept she did not intend to survive.
Her heart stopped a number of times and she was revived by the medical team at University College Hospital Galway (UCHG) but at that stage, she had suffered massive brain damage. She spent most of the next year at UCHG and went to the National Rehabilitation Hospital in Dublin for a few months.
She was transferred back to UCHG but when pressure was put on her parents to move her, Amanda was put into a nursing home where she developed a very severe infection which led to her being readmitted to hospital after one week. Her feeding tube became infected and had to be replaced three times in hospital, and she developed MRSA.
When her condition began to improve, the pressure began again to have her moved into private nursing home care and after a long search, the Havertys finally got her into the Little Flower nursing home in Ardrahan, Co Galway.
"At this stage, we had a meeting with Amanda's consultant, social worker, the sister-in-charge of the ward and the discharge manager. We explained that there was a shortfall in her subvention which we would not be able to meet, and they told us that the shortfall would be taken care of as she was entitled to a full care package," explains Anne.
In April 2006, the Havertys eventually managed to get the blind pension of €165.80 a week for Amanda, but four days later the same amount was subtracted from her nursing home subvention.
Anne was even more horrified to discover that Lauren's children's allowance was also being taken from Amanda's account to prop up her subvention.
"How can this be fair? Amanda is 33 years old; she has no idea what's going on in her life. The next youngest person in the home after her is 70. She is getting no physiotherapy, occupational therapy or dental care even though we were told [ by the HSE] that this would all be provided. And what's worse is that we know for a fact that people with brain injuries on the east side of the country are getting full care packages while we are banging on closed doors in the west," her mother says.
The Havertys have written to Minister for Health Mary Harney and Prof Brendan Drumm on many occasions seeking a meeting, without success and have contacted countless politicians to try to get their plight recognised.
When contacted about the Havertys' situation, a spokeswoman for the HSE West said that although they were unable to comment in detail on individual cases, they wanted to stress that in this case, "a range of services and financial supports have been made available to the family with more to be made available in the next few weeks".
Now in their 60s, the Havertys had planned to move to France next year after Eamonn retired from his job as a research co-ordinator at NUIG. Not only have those dreams gone out the window, but Anne has had to take a job in the local shop to try to make ends meet.
The couple are full-time carers of Lauren and their own son, Ian, who has Down syndrome, and Anne is still recovering from a hysterectomy she had earlier this year when cancer cells were discovered in her womb.
"We're just an ordinary family and we simply don't have the money to cover the shortfall in Amanda's subvention every week. The shortfall is €100 a week at the moment and that is going to go up by €50 a week in January. That's without physio, occupational therapy, etc which we have to pay for on top of this," explains Anne.