Formal supports
To plan and prepare for the future, family members and support networks need to understand and know how to support the ageing process for people with Down syndrome from a support perspective, considering all the changes that may be needed in terms of support for that person.
This includes living arrangements, the involvement of siblings, and keeping an active and meaningful involvement in communities.
Changes to Informal Supports
As parents age, their ability to provide intensive support, advocacy and coordination of services may reduce. This brings challenges, particularly for people with Down syndrome who have relied on their parents for advocacy, regular assistance and housing.
Siblings often play an increased role in providing practical support as parents age. However, the level of involvement of siblings can differ depending on their personal circumstances including location, family responsibilities and employment.
Building Independence
People with Down syndrome spoke about the importance of building their skills and independence. They discussed the fact that as parents get older, they may be less able to help you do things. They suggested that by being more independent, even if they are living at home, this will mean that when parents aren’t able to help as much it will not become as big of a problem. They talked about being more independent in personal care, cooking, and looking after the home. Some people talked about using NDIS support workers to help them with building this independence.
NDIS funding
Families raised the significant barriers they experienced in accessing additional NDIS funding when the needs of the individual with Down syndrome change due to ageing or when family circumstances change due to health issues or the loss of a parent. Many reported long delays, with some waiting over three months for responses from the NDIA regarding additional support needs. In several cases, families described NDIS plans as insufficient for addressing the changing needs of the person with Down syndrome, with the NDIA often attributing these needs to health-related issues
Your Services Your Rights Conversation Cards (CID)