Let’s raise the profile of disability dietitians: an interview with Carmel Curlewis
When a Human Rights Commission report landed on Carmel Curlewis’s desk in the late 1990s it was like a call to action.
There were cases of people with disabilities who were malnourished, said the report, and they were on her doorstep - living in the Central West of NSW where she worked as a health service dietitian.
“It was one of those crossroads moments. I thought to myself, ‘I haven’t worked so hard to become a dietitian to let people be malnourished on my watch’,” she says.
Keen to make a difference, she set up a private practice, consulting to the then NSW Department of Community Services which ran institutions for people with disabilities including one in Orange in the Central West. It cared for people with autism, Down syndrome, cerebral palsy and mental illness, some of them in locked wards.
“The staff did the best they could but in those days people thought that if residents had problems with eating there wasn’t much you could do to help. There were people with nutrient deficiencies who weren’t getting enough protein or kilojoules - some had BMIs as low as 12 or 14. When you’re a young dietitian exposed to someone who’s really malnourished it’s something you never forget.”
But the team she worked with wanted to do better and after five years 90 per cent of residents in her care had reached a healthy weight range.
“Some adults even grew taller, suggesting that any stunting they had was due to malnutrition rather than their disability. Some women who’d stopped menstruating began having periods again,” she says.
These old institutions are long gone but the fight for better nutrition for people with disabilities isn’t over. Carmel’s evidence as an expert witness for a client with cerebral palsy resulted in the recent landmark AAT ruling that the National Disability Insurance Agency was wrong in denying swallowing support funding to a man with cerebral palsy who has severe dysphagia.
The case shines a light on the tricky interface between health departments and the NDIS when it comes to who pays for what nutrition-related services and supports.
The nutrition support products, including thickeners, that Carmel Curlewis recommended were upheld as ‘reasonable and necessary’ supports and eligible for NDIS funding. Being able to swallow safely contributed to her client’s ability to function well and socialise, increased his independence and promoted self-care and self-management – all social and functional outcomes outlined in the NDIS Act.
The NDIA is still to decide whether to appeal the decision in the Federal Court.
Carmel, a registered provider with the NDIS, has worked in disability for 20 years and runs a private practice in southern NSW and the ACT. Her clients, mostly NDIS participants, have a range of disabilities including mental health problems, autism, cerebral palsy, Down syndrome, PKU and rare genetic conditions such as Schaaf-Yang syndrome. Many have dysphagia.
“Since that day in the 1990s I’ve felt the need to give people with disability a voice - and with experience comes the knowledge and confidence to speak up for dietitian services when they’re needed,” she says.
We also need to raise the profile of disability dietitians because they’re fundamental to the health of people with disabilities, she adds.
“Disability needs more dietitians. A dietitian can help prevent further disability from common risk factors like dysphagia, aspiration and cardiovascular disease and improve a person’s weight, their gut health and their quality of life.
“It’s often relatively small things that dietitians can do that make a big difference to someone’s life and improve their confidence and self-esteem. Managing bowel problems like faecal incontinence can make it easier for people to get out and about, for instance.
“We also do more than provide treatment - we have a counselling role too. We often have complex clients in complex situations and we have to support and skill the people around them.
“It’s highly challenging work and you have to think outside the square - but it’s also very rewarding. Every day I learn something new.”
Carmel has presented two webinars for Education in Nutrition
We have other presentations for dietitians interested in disability.
NDIS- Frequently Asked Questions by Aimee Macleod-Taylor, 2017 (Free)
Intellectual disability: successful nutritional management by, 2016 by Jodie Ellis
Search "Disability" in our presentations page for a full listing