Adam King has defied all the odds and needs a wheelchair to realise his full potential, says Catherine Shanahan
Adam King, miracle child, scrabbles around in the dirt in the playground, “like an animal on the ground”.
Adam, aged three, is on a waiting list for a wheelchair for more than seven months.
His parents, Fiona and David King, say his dignity and safety “are being compromised on a daily basis” because, without a wheelchair, he is forced to spend much of his time on the ground, on all fours.
Fiona says this is a violation of his human rights, and contrary to the UN Convention on the Rights of Persons with Disabilities, which our Government is due to ratify at the end of March, the last of the 27 EU states to do so.
The Kings, from Ballymakeagh Beg, Killeagh, Co Cork, have been fighting for Adam since he was in the womb; at 24 weeks, he was diagnosed with Osteognesis Imperfecta (OI), a brittle bone condition that, in its most extreme form, is incompatible with life.
That fight for Adam’s survival took them to the Karolinska Institute in Stockholm, where, at 28 weeks’ gestation, stem cells were infused via the umbilical cord in an effort to promote healthy bone growth. Prior to this infusion, every time Fiona had a scan, they could see his femurs fracturing and his humeri, (bones that run from shoulder to elbow), and his ribs.
They were growing fractured because of his OI.
The infusion worked, albeit David believes he will need further infusions as time goes on. Adam is on a drug, Pamidronate, which slows down the destructive part of the bone cycle and helps increase bone density. So far, he has defied all the odds. He has fallen out of his high chair and didn’t fracture. He has fallen from his buggy onto concrete, and didn’t fracture.
What he needs now is a wheelchair. Like most three-year-olds, he is curious about the world around him and wants to explore. He does not want to depend on his mother and his buggy. “My buggy is stupid, take me out,” he says to Fiona.
Adam has a walking frame, but Fiona says it’s too heavy to manoeuvre comfortably and he tires quickly. He can walk extremely slowly for a few meters before needing a break. He is on a waiting list for a replacement walking frame. The Kings are, however, extremely anxious that their son has access to a wheelchair sooner rather than later. He is due to start pre-school in August and will need to be trained in advance to do everyday tasks, like hoisting himself from his wheelchair onto the toilet.
The manner in which the waiting lists operate is a cause of frustration for Fiona. Last December, Adam had reached the number one spot on the Enable Ireland list, but since then, he has fallen back to number four. At the rate wheelchairs are allocated, Fiona estimates it will be May or June before her son is approved. Adam is on the list since July 18 last.
Fiona’s gripe is not with Enable Ireland. She says Adam’s therapists — physiotherapy and occupational therapy — are wonderful. However, they must compete against other disability organisations when trying to secure a wheelchair.
The HSE’s Resource Allocation Groups (RAG) meet fortnightly or monthly, and at these meetings, the different disability organisations such as Cope and Enable Ireland, present their waiting lists, indexed in order of clinical need. Applications for aids and appliances are also received from community healthcare organisations and acute hospitals, for patients being discharged. This means while Adam may be number one on the Enable Ireland list, overall, his position could be much lower. Moreover, if more urgent cases present at Enable Ireland, he will also fall down that list, as has happened.
The HSE told the Irish Examiner that it is “committed to an equitable and transparent management of aids and appliances requests” but that funding is “finite”, with no specific amount allocated to the provision of wheelchairs. Instead, funding is spread across a variety of aids including specialised buggies, moulded seating, power packs and bathroom aids.
Moreover, in the Cork/Kerry area, adults and children are on the same waiting list. Labour TD Seán Sherlock, who raised Adam’s case via a parliamentary question to Health Minister Simon Harris, received a response from the HSE saying funding is allocated on the basis of need, “rather than by age category”. The HSE told Mr Sherlock it was “not aware of how other areas operate their aids and appliance budget and whether they have separate funding streams for children and adults”, but at any rate, in Cork and Kerry, adults and children clearly compete.
Currently, there are 53 children in the Cork/Kerry area waiting for a wheelchair, according to HSE figures, including two children waiting more than a year.
Enable Ireland said they prioritise items on their list “based on the nature of the request, the urgency and the length of time the item has been on the list”.
“This prioritisation process was devised by our physiotherapy and occupational therapy departments and agreed with the HSE. Each month the list is reviewed by our physiotherapy and occupational therapy department heads jointly, and is revised according to presenting need.”
Enable Ireland said each month, new equipment requests are added.
“The list is therefore a rolling list, and a child’s place on it may change depending on the specific needs of each child and piece of equipment on the list at the end of the month.
“For this reason, there is no average length of waiting time on our list. Each request is assessed based on need, as outlined in the process above.”
Fiona recognises that there are urgent cases that need to be prioritised, but her fight is for her own child. She says Adam has overcome many odds to date and all they want is to give him the best chance in life.
Fiona says if Adam has to wait until May or June for wheelchair approval, it will take another four-six weeks to manufacture the wheelchair, which will have to be tailored to cater for his extremely short stature, the result of his OI.
That will leave very little time to get him used to an appliance vital to his independence, dignity and quality of life, she says.
She points out that Enable Ireland’s mission statement is to “work in partnership with those who use our services to achieve maximum independence, choice and inclusion in their communities” — yet the manner in which aspects of the disability services operate prevents Enable Ireland achieving this goal, she says.
Fiona says depriving Adam of a wheelchair is not just affecting him physically.
“It’s also affecting his social development because his mobility is limited and he cannot easily join in with other children,” she says.
David wants Simon Harris to review the manner in which the waiting lists operate.
“Why do children, who are our most vulnerable members of society, have to wait for what is arguably, a support that enables their human rights to be realised?” he asks.
“Article 7.2 of the UN Convention on the Rights of Persons with Disabilities, which this Government’s politicians are quick to congratulate themselves for ratifying, states that “in all actions concerning children with disabilities, the best interests of the child shall be a primary concern”.
“Waiting list figures and, it seems, practices, are not common across jurisdictions. How can we, as a nation, genuinely think that Article 7.2 of the UNCRPD can be enacted in what appears to be an unequal system?”