Downs With Ups

Copyright, Artemis International

I wrote the following letter to Artemis International, the producers of a series that was recently aired on the ABC.

Hi.

I’ve been watching the Dreamhouse and just wanted to let you know that I think it’s wonderful. Thank you for having the courage, tenacity and sensitivity to produce and pitch this series.

As a mother of a 12-year-old daughter with Down syndrome, the future is filled with uncertainty, especially her adulthood. We have so many gaps in our expectations, including whether she would be able to live independently.

Not only does this series highlight the ability of people with an intellectual disability (ID), it also brings to light the issue of inadequate housing resourcing for people with ID.

Thank you, once again. You have given us hope.

The Dreamhouse depicted three young adults, who had been given the opportunity to leave home and move in together as flatmates. As you can tell from my letter, these were no ordinary flatmates, two of whom have Down syndrome and one has autism.

The housing model required the support of volunteers and a mentor to help the flatmates learn how to live independently. The deal was that if after 10 weeks, they proved they could manage, they were able to continue living in the house.

From my experience with Poppet, I’m required to help her learn things that others would pick up by osmosis. For example, I often need to help her discern which behaviours are acceptable in public or which topics of conversation she may have with people generally. So for the three flatmates, their learning curve was high, for they not only needed to learn how to live together, but to also share in the running of the house.

The support required to help the three flatmates was initially incredibly high, however as they learned and practiced their new skills and ways of thinking, they became successful in living comparatively independently. Mentoring via Skype with disability specialist assistance was another brilliant way that supported each flatmate. This assistance came from Geoff Potter from the Centre of Applied Behaviour Analysis.

I don’t want to spoil the ending for you if you get to watch the series, but suffice to say, each person developed beyond expectations and the ‘Dreamhouse’ became a reality.

The people I’ve spoken with about the series have all commented on how their perceptions have changed for the better of people with an ID. “I didn’t know they could do that,” was a common reaction.

There have been criticisms though of the series. Some say that people with an ID should be able to live on their own with support, not needing to share with others; the Dreamhouse model, it has been argued was not too dissimilar from current practices. However, from my perspective, many young people I know end up ‘flatting’ with others for any number of reasons including social and financial.

Housing for people with disabilities is a critical and complex social issue for Australia. I hope that many of our politicians saw the program so that they may rethink the issue of housing for people with disabilities. Now would be a good time to lobby our governments.

I’m only going to scratch the surface here, but I’m going to offer some commentary on this issue.

The Department of Human Services is responsible for public housing and divides the State into regions. In our region at this point, there are currently approximately 2,061 applicants waiting for public housing.[1] This figure does not include people who have not registered their need.

Included in this are those people who have an ID, who often have a more difficult time in obtaining housing. This is due to a number of factors, including the severe shortage of affordable housing for people living on a disability pension. In March 2008, median prices for renting a one-bedroom unit was around $235/week in the city, the basic pension around $546/fortnight.[2]

Additionally, due to discrimination and insufficient opportunities, housing agencies are often reluctant to place people with an ID into homes, as they viewed as risky tenants.

So, what happens to these people? Well, they end up ‘permanent’ residents in temporary respite centres, patients in hospitals or aged care facilities or they live with their parents or other family members. In 2007, family members who were 75 years old or older cared for a sixth of those people waiting for accommodation in this state.[3]

The cost of this, were it to be calculated would be significant and yet because the factors influencing the economics of this crisis are so disparate, it’s difficult to determine.

However, to give you an idea of the financial benefit of independent living, with appropriate support, similar to the Dreamhouse, here’s an example: a young man with ‘complex behaviour’ issues moved from a ‘community residential unit’ to his own home with support. The annual costs reduced from approximately $300,000 to $93,000, a saving of around $207,000 a year. Extrapolate this until his 65^th birthday and the cost savings are around $9,108,000.[4]

There is more to this issue than just economics though. As stated in the NDS submission, “a person with intellectual disability and high, complex or changing needs should be able to expect standards…that are equal to that of…wider community members.”

The Office of the Public Advocate outlines at least three regulations that endorse this notion; these are the Victorian Charter of Human Rights and Responsibilities Act 2006, the International Covenant on Economic, Social and Cultural Rights and the United Nations Convention on the Rights of Persons with Disabilities.[5]

The reason these exist is to acknowledge that people with an ID or any disability for that matter can contribute to society and deepen our understanding of the world. “…disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others…”[6]

Something as fundamental as a roof over one’s head is an example of one of those barriers. The Dreamhouse went to extraordinary lengths to demonstrate just how successful people with an ID can be, once some of those barriers have been removed. As I said in my letter, there is hope.

Thank you to the team at Artemis International and the team at the Centre of Applied Behaviour Analysis.

Please note, copies of the DVD from Marcom here http://www.marcom.com.au/product_details.php?prod=6RLTDH .

[1] http://www.dhs.vic.gov.au/about-the-department/documents-and-resources/research,-data-and-statistics/public-housing-waiting-and-transfer-list

[2] Submission to Inquiries into Supported Accommodation for those with Disability and Mental Illness Valid, Star Victoria Inc., Reinforce Inc. and AMIDA. No date.

[3] Ibid

[4] NDS Victoria 2013-14 State Budget Submission, National Disability Services. No date.

[5] The Public Housing Needs of People with Disabilities: Submission to the Inquiry into the Adequacy and

Future Directions of Public Housing in Victoria, Office of the Public Advocate. January 2010

[6] United Nations Convention on the Rights of Persons with Disabilities