Finding the Right Support Services for People Living with Cerebral Palsy
19 October, 2023
Living with cerebral palsy presents unique challenges. However, with the right supports, individuals can greatly enhance their quality of life.
Therefore, this blog post aims to provide some background information on what types of services are available through the NDIS and what to look for in terms of services.
Our hope is that we can help individuals, families, and caregivers access the best quality services available for those living with cerebral palsy.
Why Cerebral Palsy Support Requires Attention
The NDIS releases quarterly reports that provide information for participants living with particular conditions.
The most recent Cerebral Palsy related report indicates that there are 610,502 participants in the NDIS in Australia with a primary disability of cerebral palsy. However, they reported only a 65% level of satisfaction with the NDIS which compares to a rate of 75% for other disabilities. In addition, the NDIS complaint rate for people with cerebral palsy was 10%, compared with 6% for all participants.
These statistics suggest that there may be some issues with cerebral palsy support that need more attention from the NDIS and the disability sector more generally. It also suggests that people with cerebral palsy need to have their voices heard and that support providers need to re-focus on providing high quality support for those living with cerebral palsy.
Begin by providing a brief overview of cerebral palsy, explaining that it is a group of disorders affecting movement and muscle coordination. Highlight the diversity of experiences within the cerebral palsy community, as the condition can manifest in various ways and to different degrees.
The Importance of Support Services
It's important to note that not everyone with cerebral palsy has the same experiences or difficulties. In fact, everyone's experience is different. Symptoms and living situations differ greatly and many people receive fantastic support that complements their particular situation perfectly.
However, this is not true of all people living with cerebral palsy and tailored services can have a huge impact on well-being, by enhancing mobility, communication, fostering independence and enhancing participation in the community.
Indeed, one positive of the most recent report, is that 81% of participants aged 15 and over, said the NDIS helped them have more choice and control over their lives. This is compared with 77% of NDIS participants overall.
Support For Children with Cerebral Palsy
Importantly, the NDIS is available for children with a confirmed diagnosis of cerebral palsy and in fact, 41% of NDIS participants with a primary disability of cerebral palsy are aged 18 and under.
Cerebral Palsy research indicates that early intervention is the best way for new parents to support their child and assist them in their development and health. The types of interventions that might be undertaken, involve physical therapies, education and mobility supports like wheelchairs that can help children reach their full potential.
Navigating the NDIS (National Disability Insurance Scheme)
The National Disability Insurance Scheme (NDIS) plays a crucial role in supporting people with cerebral palsy in Australia. The NDIS program provides funding aimed at promoting independence, inclusion, and an improved quality of life. The specific services and supports offered under the NDIS vary based on the individual's needs and goals as outlined in their NDIS plan.
There are several types of cerebral palsy support services that are available under the NDIS that may be worth considering:
Types of Supports
While not available to cover medical costs such as pharmaceuticals, therapies such as physiotherapy, occupational therapy, and speech therapy are covered by the NDIS and can provide significant benefits in addressing specific challenges associated with cerebral palsy.
This is particularly true for children and young people. Early intervention has been shown to have long lasting benefits.
NDIS funding is available for a wide range of assistive devices and technologies, from mobility aids to communication devices. These tools can significantly improve the quality of life for individuals with cerebral palsy.
Accessing education can involve significant difficulty. However, tailored educational services, including special education programs and support for inclusion in mainstream classrooms can also provide huge benefits for children and young adults and can potentially be funded through the NDIS.
Similarly, assistive technology can help facilitate learning for individuals affected by cerebral palsy.
Social and Emotional Support:
Social support through the NDIS can also be crucial for addressing the social, emotional, and practical difficulties that individuals may face in everyday life. By facilitating community participation, fostering independence, and offering opportunities for social interaction, these services contribute to a more inclusive and supportive environment for people with cerebral pals.
Factors to Consider When Choosing Support Services
Individual Needs Assessment:
It's important to choose a support service provider that really focuses on your individual needs and requirements. This is especially true if you're after a provider who will assist with plan management. A big part of tailoring support to your needs, is conducting an individual needs assessment. This assessment is used to identify your specific requirements, the severity of your challenges, and your goals in life.
Factors such as mobility, communication, daily living activities, and social participation should all be discussed with you. If you feel like you're receiving a "one size fits all" approach, you may want to look elsewhere for your supports.
It almost goes without saying that the professionalism and expertise of the support worker providing you with services is paramount. Don't be afraid to check credentials or to ask for more information about a provider's level of experience.
If possible, you should also try to seek feedback from others within the cerebral palsy community and explore reviews of service providers to help you make and informed decision. Organisations such as the Cerebral Palsy Alliance is an organisation that can also be a very valuable sources of information. Another great place to look for advice and feedback on service providers is through online support groups. In these groups, other parents and people with cerebral palsy can honestly share their experiences.
Accessibility and Location:
Although a service provider may provide great service, they're no good to you if they don't provide services in your area. It's always important to consider the accessibility of services, including location and transportation. Convenience and ease of access are always important considerations and can make a big difference.
Feedback and Reviews:
Check whether there are mechanisms in place for regular feedback and reviews for the services in question. This is a great way to learn more about the professionalism of the service provider you're dealing with. In addition, feedback systems allow for adjustments to be made based on your progress and changing needs.
How Focus Care Can Help
Finding the right support for individuals living with cerebral palsy and those with similar disabilities, is a journey that requires careful consideration, research, and collaboration. By understanding the diverse needs of those with cerebral palsy and exploring the array of available services, individuals affected and their families can pave the way for a more inclusive, empowered, and fulfilling life.
Focus Care is a registered NDIS service provider, offering assistance tailored to your needs, including services for people with cerebral palsy. If you would like more resources, or are looking for a service provider that will support your independent living, offers Support Coordination, creative therapies, and more, contact us today.