The role of Access Health Autism is to explore with you the things that make healthcare access difficult, frustrating or distressing for you, and to try to find solutions.
The clinical nurse consultant who will meet with you is both autistic themselves, and a health professional – they will have personal experience of a lot of the issues you have when interacting with doctors and other professionals, but they also understand the healthcare system and the expectations of health care providers, so they can make practical suggestions to make your experiences safer and more effective.
The first time you meet with the clinical nurse consultant, you will go through a list of questions together exploring common issues and your specific experiences and concerns. This is important, because everyone’s experience is different, and general suggestions don’t help everyone. For some people, the biggest concern is not being able to communicate their symptoms or health concerns with doctors in a way that gets taken seriously; for others it is the sensory experience of hospitals or clinics – noise, smells, light, constant movement and touch. For most people, there are a number of issues that combine to make health care settings difficult or distressing to navigate.
We will do the assessment in a place that is comfortable for you. This will usually be your home, but could be any other place you’re comfortable. Please bear in mind that we’ll be talking about very personal health issues, though, so a public place where people are likely to overhear isn’t usually an ideal choice.
If you prefer, the nurse can email you the standard list of questions in advance so you can think about how to answer them before the appointment. They will probably ask extra questions to clarify your answers as well, so there is less misunderstanding.
The Assessment takes around an hour, although the length of time taken depends on how much information you are comfortable to share, and the kind of recommendations that are made. It doesn’t have to be done in a single meeting if two or more shorter appointments would be preferred.
We will talk about your personal experiences, and the things that make it difficult. The nurse will take a lot of notes as you talk, and may check back with you by email or your preferred method of communication after the assessment to ensure they have understood properly.
After the assessment
Following the appointment, the nurse will write up a report of the assessment, along with suggestions for avoiding or overcoming the barriers you discussed. Many of these will have been suggested at the appointment; others may require some research (e.g. finding the details of the right person to speak to at your hospital or clinic, or the phone number of a particular service).
If you feel comfortable to negotiate the accommodations you need with your health professional yourself, that report may be all you need. If you would prefer a professionally presented letter or report to give to health professionals, this can also be arranged for an extra cost.
The invoice will be sent after the appointment, and needs to be paid before the reports are sent to you.
It may be possible to use NDIS funding for this service; it depends on what is included in your package.