Kelsey was born in 1992. She had numerous brain haemorrhages which has left her with with multiple disabilities , neurological and medical conditions. This means that Kelsey has very high complex support needs. Since leaving her special school in 2010, she now lives in a group home with 4 other young ladies. Were she is happy, relaxed and learning new skills whilst in this organisation excellent care.
She has been attending Day Programs under the Self Managed model. This is funded under Post School Options, Community Participation Program and she has the Exceptional level of funding. This Program is funded and managed by the NSW Government through ADHC, Department of Human Services.
This level of funding, approx $54,000, is given to about 3% of all the highest complex needs school leavers and is indicative of the level of 1:1 care that Kelsey requires to meet her needs.
We have tried 3 service providers in our local country area. None of whom were able to provide the necessary level and consistency of support that she needs. Under the care of one service provider she has been man handled and mistreated. We have now removed her from that service. These incidents have left us (her parents) with total loss of trust, confidence and respect for these service providers .She is currently supported by the organisation that runs her group home. This is working brilliantly but is short term because they are not an approved Day program service in this area. Therefore, a brokerage agreement between her previous service and current provider is utilised. This in turn is “chewing up” her funding, of how much we are not told.
Kelsey’s needs are extremely complex including cerebral palsy,intellectual disability , autism, sensory defensiveness,uncontrolled epilepsy and other neurological and medical needs. Kelsey is non verbal but is definite in her non verbal communication. This does lead to Kelsey resorting to self injurious and “challenging behaviours” when her cues, routines or plans are missed or not followed.She has quite specific individual programs, care plans, tube feeding schedules, Brushing Technique and Sensory therapy and a Plan to Keep her calm.
These require a very careful choice of support worker for Kelsey.Due to her sensory defensiveness diagnosis, she is unable to cope with some personality types. This has proved to be one of the biggest problems with other organisations. The level of understanding of her needs has been difficult to teach to managers and support workers alike. This has had dire consequences for Kelsey.
Why aren’t we , her parents, able to be given control her Day Program funding? We would be able to employ suitable staff and ensure that her program is flexible to meet Kelsey’s medical needs. There are days she needs to sleep late in the morning. Her program needs to be Kelsey Specific. Kelsey does not “fit” into any organisation, or government policies and does not “fit” into any rigid day programs already tried.
We are desperate to find the right solution for her. By that we mean, to meet Kelsey’s high complex support and medical needs whilst giving her a full and meaningful life.
It’s time to make NDIS real. No more talk. I wonder if more politicians had a daughter ,with needs similar to Kelsey, they would push NDIS through ASAP !!
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