Kelvin and Jaelynn

Kelvin, late 20s, was diagnosed with a progressive form of rheumatoid arthritis when he was nine.

‘He’s had a hip replacement. He’s had his wrist fused. He’s had his finger fused. He’s also blind in one eye,’ his mum Jaelynn told the Royal Commission.

In high school, despite the pain and frequent hospital admissions, Kelvin had an active social life, played the guitar, was a talented artist and played sport.

After finishing year 12, he wanted to move out of home like his friends. Jaelynn paid for a private rental and the NDIS funded a disability service provider to provide supports.

Jaelynn said the support workers were ‘glorified babysitters’ and didn’t know how to support Kelvin.

After a couple of years, Kelvin’s arthritis became much worse.

Jaelynn begged the provider to purchase basic equipment such as a walking frame, an adjustable bed and an electric can opener because Kelvin didn’t have the strength to pull the ring. The provider refused because the items weren’t in his NDIS plan.

Jaelynn didn’t know Kelvin could have applied for a plan review, and the provider didn’t tell her.

Kelvin’s mental health began to deteriorate. He stopped seeing his friends and became more and more isolated.

‘I tried everything I could to have him taken to … the mental health clinic. But it was like a revolving door there. You can be admitted one day and out the next.’

Kelvin stopped opening the door to the support workers and refused to see Jaelynn.

The provider did nothing, and continued to charge him.

Kelvin became severely malnourished. Unable to get out of bed, he would lie in his urine and faeces. He wrote ‘help’ in blood and faeces on the walls.

The people in the other units, hearing Kelvin screaming out in the night, demanded the real estate agent evict him.

Kelvin’s brother had to break into the unit to rescue him. Jaelynn believes if he hadn’t, Kelvin would have died.

Around the same time, the provider withdrew their services because Kelvin ran out of funds.

Jaelynn was shocked the provider just wiped their hands of him. ‘He’s unwell physically. He’s unwell mentally. You know, he’s malnourished. He’s virtually on death’s door.’

Desperate, Jaelynn took Kelvin to hospital and begged them to admit him for an extended period. They refused, discharging him at 3 am. He had no transport to get home and physically wasn’t able to walk from the ward to the entrance. It was ‘horrific’.

Jaelynn found emergency respite accommodation. Initially, because of COVID-19 restrictions, he was by himself. But when restrictions eased, five people moved into the home – all non-verbal with intellectual disability.

Kelvin wasn’t allowed to have anyone visit him at the home or drink alcohol.

Support workers didn’t know anything about rheumatoid arthritis. They suggested Jaelynn buy him some ‘adult nappies’ even though he was continent.

Kelvin found living in the home ‘soul destroying’.

He ended up threatening a staff member and was evicted. Jaelynn doesn’t condone threatening behaviour, but said Kelvin was physically incapable of acting on the threats.

Jaelynn found another provider. They placed him with a man who hoarded and didn’t shower. Kelvin found this very distressing because he couldn’t move around the home and hygiene was very important to him.

Kelvin had to leave when he again threatened a support worker.

Kelvin is now living with one other man who has psychosocial disability. Jaelynn is not sure if it’s a good fit.

Recently, Kelvin had to have an operation and spent some time in rehab with other people with physical disability. ‘And he thrived because he realised, “I’m not alone here.”’

Jaelynn hopes she can find Kelvin a home with other young men who have ‘either lost limbs in accidents, or arthritis … That was where he mentally thrived.’

‘A lot of these organisations, they really don’t care about who they put in with who in group homes, as long as they receive their money.’