The planning process should be much simpler for children born with Down syndrome. Parents should be supported through this process from the beginning so we can start getting documentation prepared for the plan meeting and we can get the supports they need sooner rather than later. There is not enough supports for families to get started and causes a lot of unnecessary stress.
A support worker should be available to help families and guide them through the process to help set up supports. The process can be gruelling and put unnecessary stress on families. Health professionals at the hospital could gather information for new families who have had babies born with disabilities to help with the process.
This makes no sense and is not clear with proper boundaries around it making it confusing for parents especially.
The best way to support these children and families would be to have supports in place for the families. What’s the point if parents can’t access the interventions necessary or if we are on wait lists longer than 12 months? There is nothing solid in place. Early intervention is severely miss represented - there is anything properly set up.
NDIS participants are a gold mine for many and not a lot of accountability for those providing services to families with disabilities. Pricing should be structured and dependant on the capabilities of the service - not all services are equal. There needs to be a lot more governance around those who provide services.
There needs to be a lot more services available for families to minimise wait lists.
Support Coordinators go unmonitored - families are depending on these workers to help get them set up well and inform them on processes. Families are left to figure everything out on our own while workers get paid for it. NDIS workers are too overloaded to even be able to help properly so families are left unsupported and left to figure it all out on our own.
We were denied funding to do Auslan because our baby was a newborn, we were told this could be an option later down the track as she aged. Communication starts from birth and is an important regardless of age - it’s also important to start as early as possible both for families and the participants.
Adjusting to a child with disabilities is already a big deal physically, emotionally and financially. Having supports prepared and in place give families a good start.
Outside support groups tend to offer more support than the NDIS.
Maternal Health Nurses offered more help than those employed to support the families. NDIS should be taking recommendations from health professionals to be more accurate. Support coordinators should properly support parents if that is their job and to explain the structures and provide understanding about the NDIS to parents/participants. We need workers who will support us well.
Parents should be offered funding to help at home with a support workers. More support should be offered to parents in terms of a social worker and counselling. In the early weeks of the birth appointments are constant and costly interns of travel, parking etc. Funding for travel is considered to be “parental responsibility” but it cost us a lot financially to make those appointments and it is still a struggle to recover from all the costs.
Maternal Health Nurses should be able to give more help as the frontline workers for families.
Regular feed back from participants regarding providers and workers, better regulation to improve the quality of supports and services given to families.
The funding is great but what is the point if there are not enough services available. More incentives to support employment in the NDIS areas may help.