Receiving the best care in hospital when living with a disability

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Hospital stays are more common for people with disability than for the general population of Australia, but receiving the best care while in hospital can be much more complicated, especially if you have complex needs.

Key points

  • Planning for a hospital stay can help you to receive the best care

  • You might need to think about what supports you will need while in hospital and talk to the staff about them

  • You can also plan for your transition from hospital back into your home, called discharge planning

While hospital staff like nurses and doctors are there to help you recover and be healthy enough to live at home again, sometimes they need to know more about you to deliver the care you need.

Planning can help a hospital stay – whether it is expected or an emergency – to go more smoothly.

You can plan ahead for a scheduled hospital visit by communicating with the hospital and your other regular health professionals before you arrive to find out what you can expect, but you may also like to have your own standard plan for emergency hospital visits.

Your emergency plan could include having a bag permanently packed with spare underwear and clothes, toiletries, spare medication and comfort items, always kept in an easy-to-access place. When you are suddenly admitted to hospital, the person transporting you there or supporting you during your stay can easily grab everything you need.

The bag could also contain your emergency contact details, contacts for your regular health professionals who know about your needs – like your general practitioner (GP), information about any allergies you have or medications, as well as information about how people can best communicate with you.

In an emergency, a disability support worker may be arranged to stay with you until you are settled in the hospital, to ensure all your needs are understood by hospital staff.

Giving important information to hospital staff

Since the beginning of the COVID-19 pandemic, the Federal Government has released aform for people with a disability to fill out which includes information such as personal details, the preferred method of communication and details related to a higher risk of illness from COVID-19, such as existing breathing difficulties, to provide to hospital staff.

The South Australian Government has also released a longer form for people with intellectual disability, which can contain more in-depth information.

The New South Wales Government encourages the use of theAdmission2Discharge Together folder, which should travel with a person with disability at all times so that even if they are admitted to hospital without someone to support them, staff will be able to read information about their needs – including special diets.

When you provide this information, you can include what supports you will need when doctors or specialists come to visit you in hospital, so that you can comfortably understand what is happening and why.

Funding for a better hospital stay

Supports for everyday tasks a person with disability may receive, funded by the National Disability Insurance Scheme (NDIS), are not covered when you’re in hospital, because the National Disability Insurance Agency believes a person’s care is best provided by hospital staff during their stay.

However, existing funding in an NDIS plan can be used for your regular support coordinator to arrange for your care provider to discuss your needs with the hospital.

This could involve talking about any complex needs, training for hospital staff about how to communicate with you or to know how to manage challenging behaviours, or an assessment so that plans can be developed around issues like continence care.

You might also like to let hospital staff know if your first language is not English, including if you prefer to communicate with Auslan, and that you may need to book an interpreter for important conversations.

If you need an Auslan interpreter they can be funded from your NDIS plan, but if you do not qualify for the NDIS you may have to pay for an interpreter yourself.

It is important to remember every person has a right to choose whether to consent to medical treatment.

Some people may need more support than others to decide whether to give consent and some people may also need the treatment communicated to them in different ways so that they fully understand it before they choose whether to give consent or not.

Support that meets the needs of someone making a decision about their treatment can include:

  • Having a translator for the person if their preferred language is Auslan or another language other than English
  • Involving someone who the person with disability trusts and is usually comfortable talking to
  • Having the conversation somewhere quiet and relaxing so that the person with disability is not stressed while making their decision
  • If the person has an intellectual or developmental disability use words they know and understand, but if you need to use more difficult words explain them in a simple way
  • Using whichever communication type works best for the person, for example, if they have an alternative communication system like an app on a device
  • Using pictures to show the problem and the treatment
  • Giving them time to think about it

For children under 16 who can’t make their own decision, a parent or guardian can consent on their behalf.

For those over the age of 16 who don’t understand the health issue or the treatment, a parent or guardian, spouse, unpaid carer, friend or family member closely involved may be called on to make the decision.

More information about who can consent to treatment can be found through your State or Territory’s public guardianship website.

In a life or death emergency though, a doctor may be able to perform a treatment without consent.

Planning for when you leave hospital

If the hospital staff are able to better understand your needs it can also help when they are planning your transition of care from the hospital to your home or another care service, called discharge planning.

The reasons for discharge planning are:

  • To make sure that you have the right care or support when you leave hospital
  • To make sure that the services you need are coordinated
  • To give you a better experience of care
  • To reduce the length of stays in hospital by providing some recovery or care in another setting – like at home
  • To reduce the chance of an unplanned return to hospital

Discharge planning is different for each person, so the more hospital staff know about your everyday needs, communication needs and other factors which might affect your health, the better the planning can be.

Planning can involve identifying services, equipment and follow-up appointments that may be needed to make sure you are safely transitioned out of hospital and also ensuring that the services which support you with regular everyday tasks, such as meals and personal care, can start as soon as you are home.

Family members, carers, support workers and regular health care professionals or specialists can be involved in discharge planning so that everyone understands.

Have you got any tips for improving hospital stays? Tell us in the comments below.

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