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Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Tuesday, 22 June 2010

Down and out in public health care limbo: letter to the editor

Adrienne Tunnicliffe's letter to the editor of the Sydney Morning Herald, published today, describes a too-familiar combination of circumstances for families of older people with Down syndrome - lack of availability of appropriate supported living options and an unprepared health system:

Like Barbara Grills, I care for a sister with Down Syndrome and Alzheimer's disease (''Dementia a huge challenge for Down carers'', June 21). Unfortunately, coping with the disability and this dreadful disease are not the only challenges such people face as they age. They, and those that care for them, must also negotiate a public health system that does not know what to do with them.

My sister has lived a productive and independent life in her own home. When it became obvious she could no longer cope alone, we faced and won an agonising battle to have her placed on an emergency waiting list for placement in a group home.

The Department of Ageing Disability and Home Care told us it would take more than a year to reach the top of the list. When her dementia was finally diagnosed as Alzheimer's this year, the department told us that due to the rapid progress of the disease in people with Down Syndrome, by the time she reached the top of the list the placement would no longer be appropriate and we would have to pursue placement in aged care, beginning with an aged care assessment.

The team we were referred to refused to assess her because she didn't meet the age criterion. She was left bouncing in limbo, with neither organisation accepting responsibility. Meanwhile, her carers and family waited for an inevitable crisis to occur. It did, and she was admitted through accident and emergency to Royal North Shore Hospital.

An aged care assessment was finally done, but the job of finding a suitable residential placement was given to the family. This task is heartbreaking, frustrating and demeaning. There is no suitable or appropriate placement for people with intellectual disabilities and early onset dementia.

Under increasing pressure from the hospital to relinquish an acute care bed, we accepted a respite place in an aged-care hostel. This will become permanent this month. The hostel is well run, caring, inclusive and willing to accept the challenges of her placement, but all the goodwill and care in the world cannot make it an appropriate solution.

My sister is a feisty and independent woman who has brought love into the life of everyone she has known. She only has a few years left, and she deserves better.

Adrienne Tunnicliffe, Roseville


Sybil Reisch said...

I hope you will find that this feisty and wonderful woman who has blessed others all her life will find friends in her new hostel, and bless them as well. After all your struggle to find help, I hope you can accept what cannot be changed, stay on top of things with the staff, and become part of the Team caring for her. We had a son with Down syndrome, and were challenged for years with finding the best for him. (See Jeff's story in "Journey With Jeff; Inspiration for Caregivers of People with Special Needs" by Sybil Y. Reisch, available at I wish the best for your sister, and everyone who cares for her!

Fiona Place said...

She certainly does deserve better - it is not acceptable that supported accommodation operates in crisis mode - that there is never any long term planning and careful transitioning from one 'home' to the next.