This post is a follow on from 5 Things Special Needs Parents Should Know About the NDIS. In this post, my guest NDIS planner further explains the concept of parental responsibility. Through real world examples, you’ll see why certain supports are funded (as they are disability specific and related to disability need) and why some supports are not (as they are considered to be supports provided by all parents). These are important points to keep in mind when you next review your child’s NDIS plan.
Caring for a child with a disability is challenging, the obstacles they face require extra patience, compassion, and energy than caring for a child without a disability. The NDIS exists to provide support for the extra care and support required because of a person’s disability. Parental responsibility refers to the tasks required of you as a parent regardless of whether a child has a disability or not. I think the best way to explore this concept is with an example scenario:
Aleisha and her husband Mohamed have three children Jasmine aged 15 who has cerebral palsy requiring some physical support, Aya aged 7 who has autism and Murray aged 3 who does not have a disability. Mohamed works shift work for a security company and is often away on weekends and of an evening. Aleisha is a full-time mum looking after the three children, running the house and ensuring everybody’s needs gets met.
During Aleisha’s planning conversation with her NDIS planner she told them that she is struggling to keep up with all the needs of her children, she is finding it especially difficult in the school morning routine where she must wash and get Jasmine ready, wrangle Aya who does one task and then gets distracted and constantly supervise Murray. She says that her own health has deteriorated from the stress of caring for the children.
Aleisha is requesting assistance with meal preparation to give her more time after school to run around to therapy appointments, assistance for one hour in the morning for both Jasmine and Aya, a support person to take Aya to swimming lessons on Saturday and monthly overnight respite for Jasmine and Aya. She says that she doesn’t like the idea of sending the girls away but doesn’t know what else to do as she isn’t coping.
Let’s breakdown those requests and consider what is “parental responsibility” and what is “disability specific need”
- Meal preparation – for most Australian children living at home their parents are responsible for the preparation of meals. Even though Aleisha makes the point that she spends a lot of time taking her children to therapies (disability specific) there are many other Australian’s in similar situations with after-school activities or health related appointments and they are still responsible for finding the time for preparing meals for their children. This would be considered a parental responsibility and would likely not be funded.
- Self-care for Jasmine – most 15-year-old girls without a disability would be expected to get themselves up and ready for school. They would have the capacity to perform all self-care tasks and pack their bags. Because of Jasmine’s disability, she requires support from her mum to get ready in the morning, something that most parents would not have to do. In this instance this would be considered a disability specific support and would likely be funded.
- Self-care for Aya – most 7-year-old girls without a disability require some support to get ready for school and are not doing so completely independently. Aleisha has stated that Aya’s difficulty with getting ready for school is due to lack of attention and getting distracted. Before funded supports would be put in place for assisting Aya in the mornings the NDIS would consider whether any therapist had developed strategies to be used at home (such as a visual tracking chart) and whether these had been implemented to build Aya’s capacity to do these things herself. The NDIS may also consider whether by bringing morning support in for Jasmine, her mum will now have more capacity to work with Aya on her morning routine. Without evidence of trialled strategies to increase Aya’s capacity this would be considered a parental responsibility and would likely not be funded.
- Support for swimming lessons – regardless of a child’s commitments whether they be school, extracurricular, medical or therapy related it is generally considered the responsibility of the parent to escort their children. If Aya did not have a disability she would not be expected to attend swimming lessons on her own, nor is there any extra risk to her safety if she is in the water without a support person due to physical or neurological issues. Therefore, this support would be considered parental responsibility and would not likely be funded in the plan.
- Overnight respite – as previously stated caring for a child with a disability requires extra resources as a parent than caring for a child without a disability. In this instance, Aleisha is providing most of her children’s care while her husband works and has two children with higher needs. If her children did not have disabilities it is unlikely that she would feel the need for respite support. Aleisha has stated that she doesn’t feel comfortable in sending her children to overnight respite but does not know what else to do. In this instance she could consider accessing in home support to supervise the children in her own home while she sees to the million other things a mother/wife/human being must do. This would be considered a disability specific support and would likely be funded.
The NDIS is new, it’s big and it’s complicated. It can be easy to get caught up or confused by red tape, legislation and all the different information that’s flying around. This article was designed to give some insight and some tips into how decisions and how you can support your child to get the right supports the first time around. I wish you all the best in navigating this system and hope the NDIS can support your child and your family to be happy, independent and have all your needs met.
You can find further information about the NDIS at www.ndis.gov.au.
If you have questions about your child or their plan you can email email@example.com.
If you have feedback regarding your or your child’s experience of the NDIS you can email firstname.lastname@example.org.