Last week I fulfilled a commitment that began three years ago when a disability support organisation in Albury, NSW contacted me. They wanted to know … is it legal for support workers to be trained to give insulin to a person with intellectual disability and could I provide the training?
My response was yes … and yes.
This organisation had tried unsuccessfully to get local training for their staff to administer insulin. They were told it was illegal for support workers to give insulin and nurses able to potentially do the training received legal advice they needed to be a Registered Training Organisation to do so.
I didn’t hear anything further until earlier this year when they sent an email asking if I could still do the training – it was costing them $750 a week for an agency Registered Nurse to come in twice a day to give the person their insulin. They felt the money would be better spent putting in place comprehensive diabetes care support for the whole organisation would be better value for money in the longer term.
Wow. Three years down the track and they hadn’t found anyone willing to train their staff in Victoria or New South Wales – Albury sits on the border of both states.
I see a lot of people with disability in my clinical practice and receive calls from all over Australia seeking advice on disability focussed diabetes care. I’d like to say this was the first time I had heard of this sort of situation but sadly it is a story I commonly hear and affects every state and territory in Australia.
It isn’t illegal for people with disability to have support workers trained to give them their insulin. They are unregulated care workers and if an organisation provides the appropriate education and skills evaluation, are happy to delegate the care to the support workers and provide a care plan addressing the associated issues it is legal and appropriate.
In fact, to deny such a process is a breach of Article 25 of the World Health Organisation’s UN Convention on the Rights of Persons with Disabilities. This article states people with disability must be able to access healthcare of the same standard as those without disability[1] and it is discriminatory to refuse access to quality healthcare based on a person’s disability. Access to contemporary insulin management is a human right.
There are a number of flow-on issues with support workers not able to give insulin injections or support including:
- Delays in insulin therapy commencing
- Less prescribing of non-insulin injectables
- Increased risk of hypoglycaemia as the nurse leaves after administering the medication, leaving support staff to address hypoglycaemia management and prevention
- Lack of education and care planning to support care staff in hypoglycaemia management
- High glycosylated haemoglobins (HbA1c)
- Increased likelihood of labeling a person’s diabetes as brittle
- Continuation of older less stable insulin regimens
- Lack of dose titration and intensification with multiple daily injections
- Falls from increased need to go to the toilet due to effect of hyperglycaemia
- Restrictions to a person’s activities as they wait for a nurse to arrive
- Increased risk of diabetes related complications because of elevated HbA1cs.
I can’t support these statements with evidence because people with intellectual disability are almost universally excluded from randomised controlled trials and there are few quality studies on diabetes care of the intellectually disabled. However, they are based on real situations I’ve seen in the people with disability I see in my clinics here in South Australia.
So, a traveler I became last week, taking my energy, ideas and resources to Albury for a week of infrastructure building and training to support this organisation to deliver quality diabetes care and insulin administration by their support workers. A six-hour education program gave staff an understanding of diabetes, lifestyle and pharmaceutical based care, blood glucose monitoring, insulin therapy, other health issues and the new diabetes care strategy being put in place. In the next few weeks the participants will sit three tests and achieve a pass mark of over 75% on top of the review of blood glucose monitoring technique using the Accu-Chek Guide meter and insulin delivery device I conducted last week.
I reviewed the seven individuals with diabetes supported by the service, created diabetes care plans and systems for active diabetes support and primary care follow-up. Plans are in place for one person to have their insulin changed from Mixtard 30/70 to the more contemporary NovoMix 30 – the GP had been unwilling to change the insulin until the support staff were trained. Hopefully this will address unpredictable lows and the responding highs that may be caused by the extended action time of the Mixtard insulin.
All of this was possible because a disability support agency continued to seek a solution to the barriers to their support staff learning how to administer insulin. Well done to them.
To say it is illegal for support workers to give insulin is wrong. To find a way to support them to put the appropriate process in place to safely deliver quality diabetes care is the right and decent thing to do if you want to prevent perpetuating discrimination of people with disability.
Jayne Lehmann is a Diabetes Nurse Specialist providing specialised solutions for people with an intellectual or physical disability to access quality diabetes care, including administration of insulin injections by support workers.
To find out more contact Jayne on:
www.edhealth.com.au [email protected] Mobile: 0412 102 048