Briefly describe the person you care for (age, disability, special qualities, how long you have been caring for them).
I have been the primary carer for my daughter, currently aged 17 years. Although my daughter required extra care throughout her life, significant care was not required until her late teens, when she presented with severe depression and anxiety, suicidal ideation and self-harming behaviours.
A following assessment from an occupational therapist revealed that she had sensory processing disorder and a recommendation was made to obtain an Autism assessment. She was formally diagnosed with Autism spectrum disorder level 2 in June 2016. My daughter is labelled ‘high functioning’ which is not sensitive to the enormous amount of energy she must use to process information and interact in a world she does not fully understand.
The cost of her ‘high functioning’ persona throughout the day is extreme exhaustion, anxiety, depression, difficulty maintaining relationships and extreme mood swings at home.
How long have you been accessing services for the person you care for through the NDIS?
Our third annual plan with NDIS began in December 2018. We have been accessing services through the plan throughout this time but are still learning what can be accessed, where to find services and how to manage the NDIS administration.
What are the benefits you have found for the person you care for having access to the NDIS?
I am my daughter’s primary carer and also a single mother of three. My daughter’s needs are variable and difficult to fit into a care schedule. In order to provide her with the care and attention she needs I have had to work flexible, part-time hours which places further strain on a single-income family.
The NDIS has provided some relief in being able to provide services and activities that I would otherwise not have been able to provide on my income. Psychological care has been one of the major costs and we are extremely grateful for the assistance.
My daughter has also been able to attend social activities, which has increased her confidence and helped her to build relationships within a safe community. We have accessed further occupational therapy and assistance from a mentor, which has also built her confidence and resilience and assisted greatly in helping her gain employment.
What are the benefits for you as a carer with the NDIS?
My daughter does not respond well to support workers or people, other than family, providing one-to-one care however, she has engaged in social groups, funded by NDIS which have provided me with a break from caring duties and given me the opportunity to focus on my other two children.
She has recently moved away from home to pursue studies. I am very worried about her wellbeing when away from home supports. However, the NDIS has enabled us to put informal supports in place for her so she has the best chance of success.
Have you had any challenges supporting the person you care for with the NDIS? How have you overcome these?
The NDIS is a complicated system and it needs review. We self-manage and it is difficult to interpret the plan, understand the categories for claiming and to follow through on administration. The language used in plans and on the portal needs to be simplified. We have overcome the problems with understanding plan management by talking to other users and also by requesting a one-on-one meeting with our LAC to go through our approved plan and explain what we can claim in each category e.g, psychology and occupational therapy for CB daily living.
Also, we spend all year focusing on strengths in order to build capacities and increase self-confidence but the annual review process is deficits based and is demoralising for the participant to go through. There needs to be a way for participants to express their needs without having to talk down their capacities. Before a review we take time to focus on successes together and celebrate achievements. We also talk about the need to focus on deficits and challenges during the review in order to access supports, which will facilitate further achievements. It’s a bit backwards but it helps make the review a bit more positive.
Describe what would have helped you the most when you started with the NDIS.
We had no idea what the NDIS was really about when we made the application. It remains a case of not knowing things until someone tells you or you stumble across things accidently.
I feel that it would have helped if we could have attended an information session that explained the application process (including being honest about timeframes) and also featured speakers that were using the NDIS or had similar experience.
Once plans were approved it would have been useful to attend a different information session where NDIS participants were guided through use of the portal and various administration processes – being given the opportunity to physically practice these skills on computers in the training delivery room. Easily (quickly) accessible phone support would also be useful.
Describe three things to consider when preparing for your planning meeting.
- Set clear participant goals. What does the participant need/want to improve their quality of life and increase personal capacity.
- How do you want to manage the plan? For example, plan managed or self managed. Self managing provides more options for care yet it takes more work on a personal level to manage the administration. Plan managed takes out the administration woes but limits options. Do you want to self manage some areas and plan manage others? Read up on the options available and decide what will suit you, your family and lifestyle.
- Talk to others. Spend time talking to people who have more experience with NDIS and could help you prepare for your planning meeting. The process can be daunting and overwhelming but it is easier if you have support from your peers. There are also professional advocacy services, community centres and various support networks that may be able to help.