15648 – Individual submission

I am a parent my husband and I have been providing support for our adult daughter who has a significant and permanent mental health disability plus another “invisible” disability, for 20+ years. Being diagnosed at 21, she has not been able to realise her full potential to live and work independently. We support her without obligation but out of love and to ensure she lives her best and most dignified life. She is unable to work (certainly NOT her choice) due to recurring and debilitating relapses that require many weeks of hospital treatment. We provide transport assistance for her regular medical appointments and help with paying the substantial medical/pharmaceutical incurred costs of her care.
Now retired, my husband and I continue to provide support in a physical, emotional and financial capacity, as I said to ensure optimal stability of health and and dignified life.
My daughter was on a disability pension and was managing the majority of her daily living/health costs whilst receiving this. She also successfully applied for a Permanent Disability superannuation insurance payout (another relapse trigger), at the recommendation of her treating Psychiatrist, and purchased (with some help) a modest unit – secure, safe accommodation being an extremely important need for people in this situation.
When our daughter met her now (lovely) partner (of 5 years), she (rightly) reported to Centrelink when they commenced living as a couple. Whilst her partner’s income is not high, it often reached the pension threshold. He works very long hours and it was a struggle for them to make ends meet. Approximately 12 months ago, her pension was cancelled (she was informed while having scripts filled at her pharmacy – SO UNDIGNIFIED and very distressing!). She was aware this may happen and it left her without her own source of income and the assistance the health care card provided with medical/medication cost. She’s dependent on her partner (and us) for meeting her own financial costs. The week to week struggle has exacerbated and we find ourselves assisting more and more with medical, medication and utilities costs. These increased costs, including private health cover, utilities, food and fuel keeps people in my daughter’s situation in a cycle of poverty and with little prospect of the chance to be their best selves and contribute to society in a meaningful way.
I fail to understand why my daughter’s pension was cancelled and why she can’t continue to receive at minimum, a health care card to help with meet her medical/medication costs. She doesn’t choose to not to work – she is medically unable to work.
I’ve been asked many times why my daughter doesn’t apply for NDIS support. The answer is she thinks she wouldn’t be approved and the application process in itself would be a trigger for relapse. It also doesn’t appear to cater for the type of assistance that might help her to be her best self and live a fulfilling life.
I’d like to see more compassion and individual assessment of government financial assistance for people with lifelong disability illnesses and to listen to the people in these situations.
I’d like to see greater flexibility in the assessment process for NDIS and Disabilty Pension that recognises that, as an individual, a disabled person should be afforded a minimum non means tested income and aceess to a health care card.
The majority of people receiving financial assistance from the Government would very much prefer NOT to have to. They are in genuine need and are not “rorting the system” as is so often inferred.

I worry about how my daughter will manage when my husband and I are no longer able to support her.