Born with motor neurone disease, D’s mother did everything for her for her whole life. Although she was capable, she had never even washed her own hair until after her mother died when she was 32.
After the initial shock, and being nearly forced to live in a nursing home, five years later D was living independently on her own. She had started a social group for young people in nursing homes.
We were about to have a housewarming party to celebrate this massive achievement of living on her own when D became ill. No one thought that she should have yearly health checks and she developed kidney stones. With her disability she couldn’t feel anything from her stomach down and so didn’t get the warning signs that people who can feel do.
One night on her own she rang the after hours care to tell them she needed help and would they send someone to help take her to hospital. The After Hours Disability Service determined over the phone that she was not sick enough to warrant a visit. D then had to ring the ambulance herself, on her own she went to hospital distressed.
She was sent to intensive care and put into a medically induced coma. Five months later she passed away. She never went back to her home to live.
She was let down on so many levels.
The submissions said that many people with disabilities experience problems with health care.
Some people said that the poor health care means people with disabilities live shorter lives than other Australians.
The submissions said that many health care workers are not well trained in how to look after people with disabilities.
This includes all types of health care workers, such as:
- Doctors
- Nurses
- Specialists
- Pharmacists
- community health care workers
- Other health professionals.
Sometimes, people with disabilities may experience discrimination while receiving health care.
Caring for children
Many parents use special health care services for a child with disabilities.
It is a good idea to use these services when a child is young. This is called ‘early intervention’.
Many parents said that they do not have enough access to early intervention services.
Ideas for making things better
Here are some of the ideas people had about making health care better:
- Making more money available for health care
- Making medicine cheaper
- Improving training for health care workers
- Making more early intervention services available.