DEAR News Of The Area,

WE hear of so many people complaining of lock down or having to have a needle.

I wonder how they would tolerate being confined to a hospital bed for weeks on end waiting to go home.

You have strangers coming and going around you, you are confused and very frightened.

All you want is to go home so you persistently call out “I go home” but nobody listens to you.

Visitors get greeted with “You take me home” all to no avail.

It is heart-rending.

My daughter was admitted to hospital in July.

She is 47 and has Down syndrome and early onset dementia which has been hard enough for her to understand, especially when she used to be so in control of her life.

She has been ready for discharge since the beginning of June.

She was improving each day but now she is so distraught the stress has taken over.

She has been with a local disability support service provider for nearly 30 years.

They have declined to take her home from hospital without adequate funding and have failed to have sufficient staff to care for her safely.

When her NDIS plan was reviewed on May 5 we asked for an increase in funding.

It was cut instead.

This has happened to so many people for no apparent reason.

There have been several reviews for my daughter since then as her condition has deteriorated but we get nowhere.

Today we have a new plan but it is not sufficient for her service provider.

So many people are working so hard on her behalf, many hours I am sure without pay but we just draw a blank.

I sincerely thank them.

Why does it take so long for the NDIS or NDIA to authorise funding to those in desperate need?

Surely they should have funds set aside for emergencies or those in crisis.

Why can they not increase funding when the need arises?

There is so much wastage in the system with all the red tape, it must be costing a fortune keeping her in hospital rather than at home.

I am sure there must be many other families in similar situations as we are.

When you are over 65 there are many ways that the health system can assist your discharge from hospital to go home with some extra help.

The NDIS just don’t appear to understand what it takes to support people when their circumstances take a sudden change for the worst and they are in a crisis.

They end up in hospital for weeks and weeks occupying a valuable hospital bed meant for sick people.

The nursing staff and all the people that have met my daughter in hospital have been so kind and wonderful to her.

I thank them from the bottom of my heart.

I wish I was 20 years younger, I wish my house was large enough to have her home with me.

I am so tired, my heart breaks for her as she repeats “I go home, please take me home” over and over again.

The NDIS had such promise but look at it now.

Thank goodness you have to be over 65 to go into a nursing home.

It is no place for people like my daughter, it is for the older person.

So far there has been no alternative places allocated for the younger person facing end of life or needing complex respite care.

We need a purposely built home, adequately staffed for their needs in Coffs Harbour.

Where do you start, who will take up the challenge?

Regards,
Mary BOOTH.