Auckland mother begs Jacinda Ardern to keep care home open for severely disabled son

Blake Brookland has Cornelia de Lange syndrome.
Blake Brookland has Cornelia de Lange syndrome. Photo credit: RNZ/Checkpoint.

An Auckland woman with a severely disabled son is begging the Prime Minister to intervene and keep respite services provided by Laura Fergusson Rehabilitation open.

Mandy Brookland's son Blake is in his 20s. He cannot speak or walk, and is entirely reliant on his parents to look after him.

Brookland and her husband rely on two days of respite care every week for them to get a break.

But Laura Fergusson Rehabilitation, which offers residential care and respite along with rehabilitation for stroke and brain injuries, is shutting its doors in Auckland, Waikato and Whanganui by August, citing a lack of funding as a main issue.

Brookland told Checkpoint she is not sure where her son will end up, when they need a break from full-time care.

"He was born with a rare genetic syndrome called Cornelia de Lange syndrome, which is pretty rare. He has no speech, can't walk, he needs 24/7 care. He's 100 percent dependent on us," she said.

"He has huge behaviour issues which are called self-harm. I hear a lot of bowel issues which cause pain and also results in behaviour issues.

"He needs a minimum of two people to bath him, which is an example of how hard he can be.

"He's got to be watched and monitored every second because of behaviour. My husband actually sleeps on the couch next to his bedroom so he can hear him in case he wakes up, because you have to attend to him quickly, because he does self-harm," she said.

Laura Fergusson Rehabilitation takes care of Blake for two full nights each week, "which gives us a much-needed break," Brookland said.

"It's the only actual break we get… It's more of a mental and emotional break than the physical help. And it's also the only time my husband and I get to ourselves, when he's there, because we don't get any other help."

Blake's parents were shocked to hear Laura Fergusson Rehabilitation was going to close.

"My husband attended a meeting on the Sunday and they were told that this was all going to happen, had no idea prior to that.

"I've been so stressed and upset over this, I've lost sleep, I've actually lost a bit of weight. Basically we thought this was Blake – the rest of his life – we thought we had it sussed.

"Just to be told it's ending, it's heart-wrenching."

She told Checkpoint they were initially told Laura Fergusson Rehabilitation's closure was because of a funding issue, but they then heard the management say even if the funding issue was resolved, the decision to close would not be reversed.

They are now struggling to find a new respite care facility for Blake.

"Basically we're still at a loss as to the future."

Their plan is to keep Blake at home with us for as long as possible, but Brookland said the respite is vital.

"It's a lifesaver to us. Heather McLeish the CEO… Her comment was Laura Fergusson's only a small part of our life. That's how she looks at it, but to us it's a huge part of our lives, and very important."

Brookland's husband wrote to Prime Minister Jacinda Ardern asking for help soon after the closure was announced, but they have had no response.

"We don't even know who knows what's going on. Is Jacinda even aware that this is happening? More than likely not.

"They don't need to be closing down places like this, they actually need to be building more places like this. There's just a huge lack of support."

Her message to government is simply to keep Laura Fergusson Rehabilitation open, but she does not feel that the government cares.

"We're not important to them."

'A very important facility' – Epsom MP David Seymour

Local MP David Seymour is demanding answers from the government over Laura Fergusson Rehabilitation's closure.

"It's a very important facility for a lot of people in the Epsom electorate," he told Checkpoint.

"A resident that I correspond with fairly frequently is quite distraught."

Seymour said he had been in touch with the Trust but had not spoken to the board yet. He has also written to Associate Health Minister Jenny Salesa initially to ask if she was aware of the rumours, and to ask what the Crown's plan is to provide for the people relying on the services.

"She failed to provide specific answers about what the fiscal impacts are and what sort of provisions are in place."

He told Checkpoint that relocating the clients could be damaging to them and may end up costing taxpayers more.

Checkpoint understands Associate Heath Minister Jenny Salesa is growing increasingly frustrated with Laura Fergusson Trust and its lack of co-operation with Ministry of Health before announcing its closure.