This guest blog is written by Interchange Board member, Christine Carson.

Louise (not her real name) has an intellectual disability. She has Down syndrome. She was born with it and it is permanent. It has been with her for the 42 years of her life so far and it will be with her for the rest of it. If you had to put a number on it, you could say that Louise operates at about the level of a five year-old, but it varies depending on what exactly she is trying to do. With a high level of one to one support, she is quite capable. This is her life, not a stage of it, or a few weeks of it. It is her life.

Louise is luckier than many in her situation. She comes from a large family and her immediate family members are actively involved in her life. Along with committed staff from several agencies, they all help Louise to live as independently as she can in her own rented home in Perth WA, to access community services and hopefully, to lead a personally fulfilling and enjoyable life. In the end, she wants the same things we all want.

Her income comes mainly from a Commonwealth Disability Support Pension. She also works part time. In fact, she has worked part-time for a local council for more than 10 years and is a valued employee of an agency clearly committed to the goals of equity and community inclusion. She has even earnt a batch of long service leave which her employer is keen for her to use. Travel would seem a good way to spend a fair chunk of it. Unfortunately Louise is unable to travel independently. It is beyond her abilities. But with substantial support and assistance from family and friends, it is possible.

One of her sisters is living overseas with her husband and their young family. Could Louise spend some time visiting them? The opportunity is too good to miss. Louise gets to use her long service leave, see the world and visit her sister and her family. Her close family and friends in Australia who are her unpaid carers and advocates, also get some respite from those roles. It’s a win-win situation.

The question of how to get her there is solved by a happy coincidence the sister living overseas is visiting Australia and Louise can travel back with her when she leaves. The first part of the journey is successfully put in place. The second part, how to get her home, is not so simple. After much discussion, one of her other siblings resident in Australia takes time off work and away from her own young family to fly over and bring her home.

Louise’s trip lasts for 37 days. On day 29, her Disability Support Pension is suspended. Unbeknown to Louise, Disability Support Pensions cease being paid if she is out of Australia for more than 28 days. She is notified of the suspension by an electronic letter via the online Centrelink service. There are letters in her mailbox at her house in Perth but she is not there. Either way, she is unable to understand the meaning or significance of the correspondence.

The family advocate who is authorised to access Louise’s Centrelink correspondence online tries unsuccessfully to read the letters. Instead, the current system tells her that her level of access doesn’t include letters despite her having previously had access. The online Centrelink system has failed to dovetail into the MyGov system. The bottom line is that nobody able to comprehend and act on the suspension notice knows anything about it. Meanwhile, her rent comes directly out of her Centrelink payments and is now compromised.

As an Australian citizen, Louise is entitled to all the rights and entitlements of any other adult Australian citizen. Collectively, our society has agreed that she be financially supported for life with a Disability Support Pension. The pension profoundly influences her ability to live as normal a life as possible.

Many of us regard a long overseas trip once or twice in our life as a normal part of life, an entirely mainstream expectation. Louise is fortunate that her long-time employment entitles her to a batch of long service leave. Going on an overseas trip is a valid and reasonable way to spend some or all of this leave. That the possibility exists for Louise would seem strong testament to the success of a system optimistically aspiring for integration and community inclusion.

The sanguine rhetoric of the NDIS would appear to be true. Louise would be doing something that the rest of us get to do whenever we can make it happen.

Notwithstanding that there are several obstacles to overcome to help Louise achieve a long overseas trip, it would seem the federal powers that be won’t accommodate this as an expected part of the life of a person with an intellectual disability. Centrelink staff say she does not meet the conditions for an exception to the rule; that there is no room for movement in her situation. They maintain she is not entitled to income if she spends more than 28 days outside Australia in any 12 month period. While her part-time job is important to her and her employer, and the small income she earns supplements her pension, her non-pension income is not enough to support her through an otherwise unpaid extended overseas trip for her long service leave.

Apparently, her acceptance of a Disability Support Pension is contingent on her having lower expectations than the rest of us about what she can achieve in her life.

Clearly the federal government is entitled to some oversight of Louise’s income. Understandably, it has a duty to guard against fraud or waste in the social security sector. Louise’s income is not above scrutiny for that purpose. The question remains whether their power should extend to what she spends it on and to limiting her life possibilities. Her life already has enough natural limits on it. The 28-day rule imposes an additional constraint.

The 28-day rule is unfair and arbitrarily limiting. Furthermore, it is glaringly different from the conditions imposed on recipients of the Age Pension. According to information on the Human Services website, they may spend six weeks outside Australia before the manner in which the payments are made changes. After six weeks, Age Pension payments do not stop. They are merely paid on a different schedule. The payment rates paid inside and outside Australia are roughly the same. Reductions in the rates are not considered until 26 weeks outside Australia. After 26 weeks, the rate is based on how long you have lived in Australia as an Australian resident between the age of 16 and age pension age. The blatant difference in time allowed outside Australia flagrantly discriminates against people with a disability. It is no surprise that you haven’t heard this complaint before. For those in Louise’s circumstance, their intellectual disability renders them incapable of identifying and clearly articulating the discrimination this subjects them to.

Louise has a few weeks of long service leave left that her employer insists must be cleared as soon as possible. She cannot be paid out. She must take the leave. Under the current rules, she is not eligible to access 28-days overseas with an uninterrupted pension until a year since her last trip began. If she leaves Australia again before the year is up, her pension will be suspended, again. I’m not sure she can afford it. It looks like she won’t be having an extended trip to her family overseas any time soon. That may have to wait until she qualifies for the Age Pension, although the payment rate and times extended to those on the Age Pension are currently under threat with the goal of reducing them. In any event, the Age Pension is more than 25 years away for her and Down syndrome associated ill-health is likely to befall her well before that. For now, her travel aspirations will have to be reined in to a 28-day time-frame.

Christine Carson