Joined-up disability services

I have a lifelong disability. When I was a child, there was a clinic at the hospital for every child with that disability, and they were able to meet with all of their specialists over the course of the day. I still engage with several specialists, but now that I've aged out of the children's hospital system, it's much harder to resolve things. As I age my health gets 'weirder' and it would be so useful to have all the specialists on the same page to suggest whether something might be related to my disability.

I would also like to see one directory where people with disabilities can look up the type of service they need and find a provider or process easily - for example, where do I go if my equipment needs to be upgraded or repaired? What follow-up/treatment needs to be initiated by my GP, and where can I self-refer?

Why the contribution is important

UNCRPD Article 25: Persons with disabilities have the right to the highest attainable standard of health without discrimination on the basis of disability. They are to receive the same range, quality and standard of free or affordable health services as provided other persons, receive those health services needed because of their disabilities, and not to be discriminated against in the provision of health insurance.

UNCRPD Article 26: To enable persons with disabilities to attain maximum independence and ability, countries are to provide comprehensive habilitation and rehabilitation services in the areas of health, employment and education.

People can't attain the highest possible standard of health, receive appropriate and high-quality health care or be fully independent if they are fed up with trying to navigate a complex system.

by Rebekah on March 03, 2023 at 08:43AM

Current Rating

Average rating: 5.0
Based on: 8 votes


  • Posted by AceTimelord March 11, 2023 at 03:04

    Yes this! Absolutely!
    I have multiple disabilities, some common, some rare, it sure doesn't help in care of one if they have never even heard of my other disabilities, and have no disability awareness. I have literally nearly been denied crutches because the doctor didn't think a blind person could use them so nearly sent me home completely unable to walk. And that's with a common disability. The care for my complicated disability is so fractured it is rediculous.
  • Posted by jennynoble March 14, 2023 at 10:15

    I couldn't agree more with the comments already posted here. I have to people with a rare disease. Under pediatrics they received multidisciplinary care but once they were moved to adult services their care became fragmented and a logistical nightmare and this was 30 years ago and the issues we had back them remain today.

    The Drs they see are never on the same page they don't talk to one another and as a parent each time we see a new service we have to go right back to the beginning and explain their rare condition. Referrals within the health system are often declined with the reasons for decline being too rare too complex, we don't know how we can help. The expertise of the parents are ignored.

    There needs to be a rare disease policy set in place so that there are clear guidelines on how people with disabilities should be treated within the health system.
  • Posted by Bware March 25, 2023 at 08:33

    Complete no-brainer and should have been done years ago.
    Has huge patient, whanau and system benefits plus financial savings.
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