The silent battle: Mum fights to ensure a future

Jan Moss, left, with daughter Becky. Photo / Terry Winn

Jan Moss is in despair. "Here I am, back at square one," says the chairwoman of Carers NZ and co-ordinator of the Complex Carers Group.

"I work in the sector. I've got good contacts - all that, yet I can't get anything suitable."

Moss is talking about the care of her 27-year-old daughter, Becky, who has a rare disorder called Lennox Gastaut syndrome.

Becky has just returned home from four weeks' respite care, covered in bruises - on her upper thighs, arm, chest and neck. A doctor who subsequently examined Becky said the bruising was consistent with her being held, restrained or grabbed.

Just as distressing for Moss are reports that those caring for her daughter at a specialised facility were dealing with her as though she needed to be taught a lesson. Becky is severely cognitively impaired, functioning at around pre-school level. She is non-verbal, has a very short attention span and suffers from uncontrolled epilepsy despite high doses of medication.

"They didn't appreciate the severity of her epilepsy and its impact," says Moss.

"She communicates in grunts and we decipher the grunts, but her epilepsy means she can't process cause and effect."

The Herald cannot name the care provider concerned, nor go into more detail about the case - which includes allegations that Becky was restrained by two male caregivers - because the matter is now under investigation by the police, the Health and Disability Commissioner and the Ministry of Health's Disability Support Services.

But Moss is speaking out because she's seen this sort of abuse too many times before and believes it is symptomatic of a systemic failure in disability support for those with intensive support needs.

"The general public think: 'You've done your dash, just put her in a home'," says Moss. "If I could have and I knew she would be happy and safe, I would have done it years ago."

More disheartening than the lack of suitable facilities is the absence of properly trained staff for those with high support needs. "The lack of the ability to appreciate Becky's medical condition is not uncommon in the sector," says Moss. Though the caring institutions of old have closed in favour of community-based care, Moss says an "institutional" culture persists in many facilities.

The following are incidents reported by some of the families who care for children and young adults with intensive support needs, comprising the Complex Carers Group. People with intensive support needs make up about 1 per cent of New Zealand's disability population and are the most expensive to care for, though in many circumstances much of this cost is borne by the families.

A mother returns after a short time to her daughter's care provider to find her daughter, who has Angelmans syndrome, alone in a room at the other end of the house and strapped to a wheelchair next to a heater. The care provider says some of the other children at the facility don't like her daughter.

A child returns home from weekend respite care with severely bruised and swollen ears. The mother complains but nothing is done.

A son's eyes are scratched while in respite care by another client known for this behaviour; there is no one supervising them at the time.

Parents are appalled their 37-year-old son is made to get into his pyjamas by 5pm for dinner. Others who require moving sit on a hoist sling to have their dinner, making it easier for the carers to get them in bed when dinner is over.

Different courses of a meal being mashed together is not uncommon for those who require feeding. Bedtime in some facilities is 7pm, regardless of whether or not the person wishes to settle then.The burden of caring for Becky has always fallen on Moss. It's a responsibility she accepts. But it comes at considerable cost - preventing her being the mother she wanted to be to her elder daughter who, from an early age, became Becky's other "parent". Now that daughter has her own family and Moss feels prevented once again from being the grandmother she wants to be. But her biggest worry is the future.

"I don't know that I can sustain this indefinitely. I have a number of no doubt stress-related health issues, so that's a worry for me," she says. "If anything happens to me, there is nobody else for Becks - that's my biggest fear. I know Becky's sister will always be there for her, but there is no way I would want her to accept the level of responsibility that I have."

In her darkest moments she sees a bleak solution and talks of a woman with cancer knowing her son had been abused in a care facility and the choice she made. "If it was inevitable and I knew it, like others have done, I'd knock Becks off and myself probably," says Moss, in tears.

As Moss points out, people like Becky are a population not previously seen in adulthood. Many have outlived their prognosis thanks to the dedicated care provided by their families and the miracles of modern medicine.

"I was told Becks would die before she was 5, or be in a vegetative state in an institution," says Moss. But new drugs for epilepsy mean she's relatively alert, mobile and creating a lot more work for her carers, plus an increase in the level of support she needs.

Moss acknowledges, as health professionals have told her, that Becky is one of the most difficult people to support in the country. "But I do it on my own and have done for 27 years, so she can't be too violent. It's just how you manage it."

Moss manages Becky without confrontation, using the distraction techniques, choices, rewards and other methods all parents of pre-schoolers will be familiar with. She also trains her caregivers to always pay attention to Becky's state - especially her epilepsy which needs to be carefully monitored and which can be improved when necessary with extra medication.

"People say 'you expect us to look after her like you do and nobody can do that'. I appreciate that nobody loves their kids like a mother does, but it doesn't mean you have to beat them up either."

While Moss has been able to secure a reasonably well-funded individualised care package for Becky and employs her own caregivers under a trust structure to attend to Becky's daily needs, it's the relentless routine that grinds her down.

Becky typically wakes at 5am, usually has breakfast in bed because her seizures are worst in the morning, then has a shower or bath and cleans her teeth, encouraged by her mother to do it herself, but still requiring help. Becky loves her mother to sing each morning - the song about going to sleep in a yellow cot and the car called Silver going to sleep now too. Moss has learned the art of singing while reading the paper.

Becky's caregivers arrive at about 9am, which allows Moss to begin work in her home office for the Complex Carers Group. "That sort of stuff, after 27 years, gets a bit dire," she says. It's not just the lack of personal time and space that's difficult, but that there is no let-up and nowhere to turn.

"The difficulty is getting people to speak up. Families are worried that if they say anything about their caring organisation, they might be closed down and there won't be anywhere for their children to go. Or, worse, that the caregivers will take it out on their child. I despair, really."

Unfortunately, whenever Becky has engaged with the agencies, abuse is not far away. When she was younger her special needs school built a cupboard to lock her into to train her to behave. On another occasion of respite care at a well-known care facility, she was locked up under a sanctioned restraint policy.

Today, once again, Moss is asking an unanswered question: how to ensure the protection of our society's most vulnerable people when they are in the care of professionals who are paid to support them. "I want her to be safe and happy - they are the only goals. Is that too much to ask?