The NSW Council for Intellectual Disability (NSW CID) is a peak body representing the rights and interests of people with intellectual disability in NSW.

The Council takes on such activities as providing policy advice, systemic advocacy, community education, and information provision and dissemination.

It has an information service and resource centre providing information to people with intellectual disability, their families, carers, advocates and service providers.

The organisation is committed to the principles of inclusion and participation and aims to ensure people with intellectual disability are included in every aspect of the work they undertake.

“The main way that we represent people is through systemic advocacy – constructively engaging with governments to lobby for meaningful change for people with intellectual disability,” said Aine Healy, NSW CID Policy, Promotion and Information Officer.

“Our systemic advocacy focuses on four main issues, being accommodation, health, employment and criminal justice.

“We also post on our website real stories of people’s experiences seeking good health care for people with intellectual disability.

“We are keen to have more stories about the challenges people face in getting good health care and what has worked for them to overcome the challenges. Also, stories about how the health system has responded well to the needs of people with intellectual disability are welcomed.”

Aine said NSW CID had created two pathways into their website. One is in standard English and one is in easy English.

“Some people with intellectual disability may find the easy English pathway easier to use,” she said. “Users can just click on one of the buttons on the page to make their choice.

“We have two kinds of health fact sheets: standard fact sheets for families, advocates, disability workers and other professionals and easy fact sheets for people with intellectual disability.”

Fact sheets cover a variety of topics such as Life Stages, Keeping Healthy, Health Problems, Sexual Health, Finding the Right Help, Dealing with Health Professionals, Healthy Carers, Rights and Complaints; and handy other information and contacts.

The fact sheets on Health and Intellectual Disability are aimed to help people get access to good health care and to stay healthy.

“They were written with assistance from experienced health professionals, people with intellectual disability and parents,” Aine said.

Both standard and easy English version fact sheets are free to download from the website: www.nswcid.org.au. The easy English versions are especially good, as they present like a readable magazine, with clear, simple pictures and very realistic scenarios and dialogues.

“We have received excellent feedback regarding these from families, carers and support staff about how straight forward and easy they are to use,” Aine said.

“We also have an information line 1800 424 065 which people throughout NSW can use.”

One of the fact sheets that we at Work ‘n’ Care found especially good was the easy English version on ‘Going to hospital for surgery’.

In this fact sheet you can find headings like:

• Saying yes or no to surgery
• Getting good information about the surgery
• Planning for surgery
• Going to your hospital check-up
• Speaking up at the check-up
• The day of surgery
• Planning to go home
• Getting better at home

Here is a small excerpt from the section on ‘Getting ready for surgery’. The actual fact sheet itself is illustrated, which makes it far more engaging, of course.

George and Aunty came to the hospital in a taxi.
George signed his consent form.
The nurse helped him change into hospital clothes.
She shaved his leg for surgery.
The doctor will put a needle in his arm for the sleep medicine.
It hurts a bit, but not for long.
If you are very worried, tell the staff at hospital.
They can make a plan with you about how to cope.
Sometimes a support person can stay while you get your needle.
Sometimes they can be there when you wake up, too.

Waking up after surgery

George wakes up in a new room.
He feels very, very tired.
There are lots of noises and machines.
George has sticky pads on his chest.
These keep track of his heartbeats.
The nurse has a sick bowl for George.
After surgery there might be more things on and in your body.  For example: a small tube in your nose; a small tube in your urethra (where your wee comes out).
These will be taken out when you don’t need them anymore.