The care of a disabled boy in his home compared to an institution is the subject of a High Court action. Alison Healy reports
Darren Woods has been through more in the first nine years of his life than most people experience in a lifetime.
He was born with spina bifida and hydrocephalus and developed intractable epilepsy when he was nine months old. At one stage, he was having up to 150 seizures a day.
Darren, from Ballincollig, Co Cork, is now profoundly mentally and physically disabled.
His case is expected to take centre stage in the High Court today when his mother Tessa takes on the State, the Ministers for Health and Education and the Southern Health Board for their failure to provide appropriate care for him.
This is not Tessa's first time in the courts. Five years ago, she first issued proceedings against the State seeking appropriate services for Darren but today the court will hear that the plan to provide such help has failed.
The case will centre around Tessa's wish to care for her only child at home instead of having him institutionalised.
Much of Darren's young life has been spent in hospitals and institutional care. Although he was born with spina bifida and hydrocephalus, his problems did not really start until he developed epilepsy at nine months old.
He was admitted to Our Lady's Hospital for Sick Children in Crumlin. To further complicate the situation, his epilepsy was intractable and so could not be adequately controlled by medication. Darren underwent brain surgery but this was not successful.
Today, he is in a wheelchair and needs 24-hour care. He does not have speech but is an alert and happy child with a strong awareness of his surroundings.
Darren's parents' marriage did not survive his traumatic early years - Tessa and Barry Woods separated when he was four years old and Tessa is now the primary carer when Darren is at home.
Darren attends St Paul's School at the COPE Foundation in Cork and is in part-time residential care at a COPE home in the city. He comes home two days a week and every second weekend.
While he is at home, the State funds a care assistant who provides 20 hours home support per week.However, Tessa would not be able to care for Darren without additional support from Embrace - a voluntary association. It funds a primary care nurse who provides 40 hours of care per fortnight to Darren.These carers provide an intensive care regime, including physiotherapy, walking and other stimulation.
Tessa wants the court to order the State to put a plan in place so that her son will eventually be able to live at home permanently. She has tried but failed to care for him full-time.
He spent from October 2000 to July 2001 at home with 10 hours of home support per week.
The intensive demands on Tessa resulted in her being admitted to hospital suffering from severe back problems and exhaustion. The home support was increased while she was in hospital, but reduced when she returned home again. She continues to suffer from a degenerative back condition. She is seeking support to allow around-the-clock care for her son at home, excluding the time he spends in school every day.
Embrace has been working with Tessa for some time and believes her case typifies the State's response to families in need of support.
"If the State provided appropriate support to Mrs Woods in her own home, care would never be required," said Marie O'Donoghue, assistant secretary of the group.
"When Darren is in care, he has a team of carers working with him and the other clients in the residential unit, around the clock.
"Yet, in stark contrast, when Darren is at home, the State expects Mrs Woods to be able to cope, completely on her own, save for 20 hours' home support per week."
And as he grows, Darren's needs are becoming more complex and demanding.
"It is only a matter of time again before Mrs Woods becomes exhausted and Darren is forced into care again on a full-time basis," Ms O'Donoghue said.