This toolkit is for those who want to help get young people out of nursing homes by engaging in social media.

1. social media toolkit

2. the aim of this toolkit is to provide
information to people who want to
help get young people out of nursing
homes by engaging in social media .
This document has been prepared by
Kate Carmichael, Communications Manager, Building Better Lives
email: kate.carmichael@bbl.org.au
po box 208, blackburn 3130, victoria, australia
t 1300 626 560 (in aus) f +61 3 8456 6325
www.bbl.org.au

3. Contents
Abbreviations ii Internet usage in Australia 17
What is Building Better Lives? 1 Social media statistics 19
Why are young people in nursing homes? 3 Social media example 1 • NDIS campaign 24
What is Government doing about it? 5 Social media example 2 • The Project 27
What is the solution? 9 Scenarios 31
Three key messages 11 Allies 33
Quotes 14 About the Summer Foundation 34
Young People in Nursing homes • Statistics 16 Further information 36
BUILDING BETTER LIVES SOCIAL MEDIA TOOLKIT OCTOBER 2012

4. Abbreviations
abi acquired brain injury
bbl building better lives
coag council of australian governments
crpd united nations convention on the rights of persons
with disabilities
dhs department of human services (vic)
fahcsia australian government department of families, housing,
community services and indigenous affairs
mfmc my future my choice
ndis national disability insurance scheme
rac residential aged care
ypinh young people in nursing homes
ypirac younger people in residential aged care
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5. What is Building Better Lives?
In 2009 the Summer Foundation launched
Building Better Lives, a movement that aims
to raise community awareness about the issue
of young people in nursing homes, and engage
community support to develop the Integrated
Housing Model as the innovative “next
generation” alternative to nursing homes for
Over the past 12 months, Building Better
young people with disability.
Lives has significantly increased its profile
A cornerstone of Building Better Lives is the and successfully raised greater awareness of
Ambassador Program. This program supports a the issue of young people in nursing homes.
group of young people with disability who are The two major public events that attracted
directly affected by the issue of young people attention were the Home to Home Digital
in nursing homes to share their stories through Story Exhibition in April at Fed Square, and the
a range of media including print, radio and Run Melbourne event in July.
television, and public speaking engagements
with both community and corporate audiences.
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6. these posters were
used to promote the
digital story exhibition
at fed square and were
featured across the
metro train network
thanks to pro bono
support.
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7. Why are young people in nursing homes?
Due to significant advances in medical circumstances and leisure activities of these
technology over the past 20 years, people who young people are gone.
would have once died at the scene of a car
Nursing homes are where people go to be
accident or other trauma, are now surviving.
cared for at the end stage of their lives, where
The health and disability service systems have
the average age is 83. They are not set up nor
not done enough preparation or planning to
resourced to cater for the needs of young
account for this new and increasing population.
people with disability, who may have 50 or
From an acute hospital bed, the next step for the
more years to live. Staff in nursing homes
vast majority of people who find themselves
have a certain amount of tasks to do in the
in this situation, is nursing home care.
most timely and efficient manner – they
The majority of young people living in unfortunately do not have the time to wait for
nursing homes have an acquired brain injury a person with a communication impairment to
or a late onset neurological disorder – such respond to a question.
as Multiple Sclerosis. Almost overnight the
social networks, work or study routines, living
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8. Young people like loud music, they want to It is estimated that across Australia
go to bed when they want, have a say in what there are over 6,000 young people with
they want to eat, and go out if they feel like disability living in nursing homes, with
it. Sadly, these sort of everyday choices the over 600 aged under 50 years. Each year in
rest of us take for granted are severely limited, Victoria, 70 people are forced into this type
if not available at all, in the nursing home of accommodation because there is simply
environment. nowhere else for them.
“When a younger person
comes in we are at a loss.
They don’t want to play
bingo, they don’t want
to do indoor bowls…
we’re just not geared for
younger people.”
manager of a
nursing home
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9. What is Government doing about it?
National Younger People in Residential Aged Care
(YPIRAC) Program
In February 2006, the Council of Australian The program was an enormous success
Governments (COAG) decided to implement a for those who participated in the program.
plan to get young people out of nursing homes. However, now that the program has ended,
In July that same year, the Younger People there is no commitment from the State or
in Residential Aged Care (YPIRAC) program Federal Government to provide funding for
began. In Victoria, the program was known as any more supported accommodation services.
my future my choice.
The five-year program, which finished in
June 2011, saw 22 new my future my choice
accommodation services being built for 104
young people1 with disability in Victoria.
1 COAG determined “younger people” to mean people under 50 years of
age. In the wider disability sector, young people normally refers to those under
aged 65 years.
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10. United Nations Convention on the Rights of
Persons with Disabilities
On 17 July 2008, Australia was among the (a) Persons with disabilities have the
first western nations to ratify the United opportunity to choose their place of residence
Nations Convention on the Rights of Persons and where and with whom they live on an
with Disabilities (crpd). equal basis with others and are not obliged to
live in a particular living arrangement;
Article 19 states ‘Parties to this Convention
recognize the equal right of all persons with (b) Persons with disabilities have access
disabilities to live in the community, with to a range of in-home, residential and other
choices equal to others, and shall take effective community support services, including
and appropriate measures to facilitate full personal assistance necessary to support
enjoyment by persons with disabilities of this living and inclusion in the community, and
right and their full inclusion and participation to prevent isolation or segregation from the
in the community, including by ensuring that: community;
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11. (c) Community services and facilities for
the general population are available on an
equal basis to persons with disabilities and are
responsive to their needs.’
Whilst this Convention was ratified over
four years ago, it would have greater meaning
if the YPIRAC program had not ended in June
2011, and the Australian Government had
committed to further funding to get young
people out of nursing homes.
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12. National Disability Insurance Scheme (NDIS)
Whilst there was much to celebrate with
the Federal Government announcement in
april 2012 that a National Disability Insurance
Scheme (NDIS) would be introduced, without
investment in other accommodation models,
there will be nowhere else for young people
living in nursing homes to go.
It is expected that the ndis will provide the
funding that young people need to be able to until then,
live in the community (ie by providing supports
such as carers, therapists etc). However, it what?
won’t be until 2018 when the ndis is fully
operational (and assuming no delays) that all
young people in nursing homes will be able to
access the ndis.
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13. What is the solution?
Integrated Housing Model
Current alternatives to nursing homes are The integrated model of supported housing
largely based on a ‘group home’ concept, championed by Building Better Lives will have
where the residents are expected to share a 6-10 accessible apartments spread throughout
house with other people with disability. While a larger residential development. There will be
clusters of units offer more privacy than a one apartment for disability support workers
nursing home, they are still segregated from the so that people living in the apartments will
general population. Most young people with have access to 24-hour on-call support.
disability would prefer to live in and be part of
the community, and not in an institutionalised
environment.
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14. Integrated Housing Model
The proposed model will enable people with disability to live in dwellings that are close to
friends, family, services and their community, and will therefore facilitate community participation
and support the maintenance of a lifestyle of choice. This is an important step towards the social
inclusion of people with disability.
Further, the replication of this model across the state and nation has the potential to develop
the scale of housing required to resolve the issue of young people in nursing homes.
One- or two-bed
apartment
Hub with 24-hour
support
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15. Three key messages
1. Nursing homes simply should not be an
accommodation option for young people with
disability.
They are set up to care for people at the end stage of
their lives – not young people who need support to
reach their full potential and live their lives with the
everyday choices the rest of us take for granted.
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16. 2. The NDIS alone will not resolve the issue of
young people living in nursing homes.
More accommodation services need to be built and
services to prevent new admissions (ie. slow-stream
rehabilitation1) must be made available to everyone.
If the Government does not change the system and
invest in other accommodation models, 200 people
under 50 will still be admitted to nursing homes each
year in Australia.
1 Slow-Stream rehabilitation or transitional living services embed rehabilitation into everyday activities in a home-like environment rather than a
hospital environment. These services enable people to maximise their independent living skills and abilities, live in the least restrictive environment and,
over the longer term, reduce lifetime support needs and cost of care.
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17. 3. As per the ratified UN Convention, people with
disability ought to have the right to choose
whom they live with and where.
People with disability are just like everyone else.
They want somewhere to live, someone to love, and
something to do.
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18. Quotes
The following quotes illustrate how moving from a nursing home to an environment that
is more home-like has given these young people the ability to make everyday choices for
themselves. These people participated in the my future my choice initiative, and were part
of the Summer Foundation’s evaluation of that same program:
“right now, you know, i love it. i can play music loudly
and i can play my own music.”
“clean my own clothes…just chuck them in the washing
machine, put some powder in it, and psssh.”
“you can make your own mind up what you want for
tea. what you want for lunch or whatever.”
“just being yourself, eat when you want to eat, just be
who you want to be.”
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19. “at first… it was unusual to go out the front door
but now i’ve done it quite often, it’s just…it’s not so
formal…you’re free. i have a life.”
“it feels like home. i never could say i wanted to be in
a nursing home. i could never call it ‘home’.”
“i’m always doing something. they’re either getting
me into the kitchen helping them or doing something
else. i always have the option of making something and
that i think it is great.”
“i suppose there’s a sense of security because you know
it’s your home and it’s a sense of belonging…you do
participate in a lot of the day-to-day things, running
of the house and that, and that’s always good.”
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20. Young People in Nursing homes • Statistics
82% never go out to visit their friends.
56% don’t have a say in what time they go to bed.
52% won’t be visited by a friend this year.
45% don’t go out to the movies, cafés or to sports events.
27% are parents of school-aged children.
13% hardly ever go outside.
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21. Internet usage in Australia
The Facts
According to Nielsen Online, there were 15.6
million Australians using the internet in the
7,820,000
month of July. Whilst Gen X (18-34 yrs) and
online users
Gen Y (35-49) are viewed as the most tech-
savvy users, Baby Boomers (50-64) account
for 20% of all online traffic and spend nearly
100 hours each month online. In the month of
July, 72% visited Facebook and were 27% more
likely than any other group to visit Linkedin.
7,791,000
online users
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22. number of online australians by age group
and gender
males 50+
females 2-17
females 18-24 5% 16% males 35-49
7% 13%
females 25-34 9%
10% males 25-34
14%
6%
15% 5%
females 35-49
males 18-24
males 2-17
females 50+
Source: Nielsen Online Ratings July 2012
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23. Social media statistics
Facebook
figures for australia as at august 2012
Facebook now has more than 950 million total users 11,454,200
people using the social networking service % population 53.87%
worldwide each month, with 543 million % online population* 67.43%
accessing it via a mobile device, which is gender split (m/f) 47% / 53%
a whopping 67% increase over the past 12
largest age segment 25-34 (26%)
months.
average time on site 21:40
In Australia, the figures for August state that Source: www.marginmedia.com.au and *www.socialbakers.com
there are almost 11.5 million Facebook users,
figures for bbl facebook page as at 13 september 2012
which represents 54% of the population, and
total likes 3037
ranks Australia 21st in the world with regards
gender split (m/f) 25% / 75 %
to numbers of people using this social media largest age segment 35-44 (21.2%)
platform. next largest age group 25-34 (20.7%)
Source: Facebook Inc.
In the four weeks to 14/09/12, of the 784 New Likes,
599 came from people using mobile devices.
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24. Twitter
Twitter has 500 million registered users figures for australia as at august 2012
worldwide, however according to a recent
total users 1,800,000
study1, only 34% of them are active (have made
% population -
a change to their account within a 3-month
gender split (m/f) 66% / 34%
period).
largest age segment 45-54 (35%)
average time on site 10:50
Source: www.marginmedia.com.au
1 Study completed by French analytics firm Semiocast in July 2012.
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25. LinkedIn
LinkedIn has over 175 million users figures for australia as at august 2012
worldwide, with over 2 million LinkedIn total users* 3, 241, 470
company pages. % population* 15.24%
% online population* 19.03%
LinkedIn Australia estimates that there are gender split (m/f) 59% / 41%
approximately 4.8million professionals in largest age segment 45-54 (37%)
Australia, with over 60% using LinkedIn. average time on site 8:50
Source: www.marginmedia.com.au and *www.socialbakers.com
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26. YouTube
YouTube is the second largest search engine
figures for australia as at august 2012
in the world, with about 2 million searches
total users 11,00,000 uav
per day and an unbelievable 72 hours of
% population 48.44%
video content uploaded to the platform every
minute. (Margin Media) gender split (m/f)
largest age segment
average time on site 18:20
Source: www.adcorp.com.au
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27. Other Platforms
figures for australia august 2012 august 2011
blogspot 4,000,000 4,700,000 uav
wordpress.com 1,600,000 2,000,000
instagram 1,283,500 -
tumblr 1,200,000 1,000,000
trip advisor 960,000 -
flickr 820,000 1,300,000
pinterest 620,000 -
google plus 600,000 362,500
myspace 390,000 920,000
yelp 192,000 -
reddit 150,000 100,000
stumbleupon 110,000 150,000
Source: www.socialmedianews.com.au
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28. Social media example 1 • NDIS campaign
Case 1 • NDIS campaign
There has been a lot of media coverage in car registration, you will receive rehab and
the past 6 months about the campaign for a other services and will most likely move
national disability insurance scheme (ndis); into shared supported accommodation, not
which governments will support it (currently a nursing home. If you fall off your bike or
only Qld has not agreed to participate in the skateboard and suffer the same type of injury,
national scheme) , and what it will mean for more often than not, nursing home care will
people with disability in Australia. be the default option.
Currently, the disability service system in
Australia is in tatters. People get access to
services such as rehabilitation depending upon
how they acquired their disability.
For example, in Victoria, if you have a car
accident and sustain an abi, through the tac
premium each Victorian driver pays on their
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29. Case 1 • NDIS campaign
the implementation of the The Every Australian Counts
ndis will mean that all people campaign has been leading the call for
with disability, regardless governments to act, and Building Better
of how they acquired that Lives has been integral to this, with our
disability, will get equal access campaign imagery featuring on their
to services that are needed. website. Every Australian Counts is
hoping to sign-up 200,000 supporters
for many, this can’t come soon (currently around 130,000) and in each
enough. e-newsletter BBL sends out, a reminder
to register is highlighted.
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30. Case 1 • NDIS campaign
Whilst the disability sector is still trying • the ndis is not a silver
to figure out how exactly the system will bullet. it will not
operate, and what will be included or fix everything. young
excluded, whenever and wherever the people in nursing homes
ndis is mentioned, we need to respond need to have other
with these points: accommodation options.
• the full ndis will not
be rolled out until
2018. what happens to
the people who need
services now?
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31. Social media example 2 • The Project
On July 24, Channel Ten’s The Project
featured a story on two young men in their 20’s,
Shannon and Ben. Ben moved out of a nursing
home as part of the National YPIRAC program Contrasting the stories of Ben and Shannon
that ended in June 2011. Whilst in the nursing perfectly highlighted the case for getting young
home, Ben didn’t talk, and was fed through a people out of nursing homes and into more
tube. After moving out, he has started eating home-like environments where they have the
and talking again - his mother couldn’t believe opportunity to reach their potential.
it when one day he said, “Hi Mum”.
Unlike Ben, Shannon missed out on a place
in this program and at the time of going to air,
was still in a nursing home.
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32. Case 2 • The Project (Channel 10)
What did BBL do?
With the coag meeting on the ndis FACEBOOK Share the posts from
scheduled for the day after the airing of the Building Better Lives on your own profile
segment, BBL sent out an email to everyone page and ask your friends to also share
on our newsletter subscriber list (approx your post.
2500) asking them to ‘make as much noise as
possible about the injustice of young people TWITTER Follow both @theprojecttv
being forced to live in nursing homes because and @BBLcampaign and get your fingers
there is nowhere else for them. We want the working during the program!
state, territory and federal governments to JOIN The Project Online forum (choose
commit to the full implementation of the ndis.’ The Project stories and other news) so
BBL asked supporters to: that you can make a comment while
the story is airing.
EMAIL Forward this onto everyone
in your contact list and ask them to
show their support for the ndis and
young people in nursing homes.
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33. Case 2 • The Project (Channel 10)
Our key messages Here’s what we’ll be tweeting
• Nursing homes are simply the wrong Feel free to modify for your own use or
place for young people with disability simply re-tweet our tweets:
@theprojecttv story on Young
• We need commitment from state and
People in Nursing Homes clearly
federal governments to fully implement
shows why Australia needs to
the NDIS at COAG
commit to the FULL implementation
• We need to stop new admissions of of #NDIS! #YPINH
young people to nursing homes
We must stop young people from
• We need to build more housing options being admitted to nursing homes
for the 3000 young people still in in the first place #YPINH #NDIS @
nursing homes theprojecttv
• Slow-stream rehabilitation maximises
potential and decreases life time care
costs.
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34. Case 2 • The Project (Channel 10)
#NDIS isn’t a silver bullet. More BBL also promoted the airing of the segment
housing options have to be built on Facebook, Twitter and LinkedIn.
for young people in nursing homes.
#YPINH @theprojecttv By giving supporters specific guidelines, it
was found that the take-up was much higher
@theprojecttv all people with than if a general email had been sent out about
#ABI should have access to rehab, the television program.
appropriate housing and support.
Aren’t we in Australia? #YPINH #NDIS
LET’S GET YOUNG PEOPLE OUT
OF NURSING HOMES. LET’S DO IT
TODAY.
-- ends --
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35. Scenarios
Engagement with Others
A fundamental part of the BBL campaign is Whilst the enthusiasm to do something is
educating and informing the wider community appreciated, we need to let the person know
about what young people with disability (and that young people with disability do not want
their families) want as alternatives to aged to live in institutions. They want to be part of
care nursing homes. the community. A suggested response would
simply be:
One idea that members of the public have
suggested often enough to warrant inclusion i don’t think that young
here is that of a nursing home built specifically people should be in
for young people. A post on the BBL Facebook institutions. they should
page said, be living in the community.
cant we get a group of they want to go to cafés,
people together and invest shops & sports events just
in building a home for the like the rest of us.
young ones? it cant be that
hard really????
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36. Engagement with Others
The Integrated Housing Model (see p.5) will BBL is not saying that nursing homes are bad
be the first of its kind in Australia, where people places, just the wrong place for young people
with disability will live close to community with disability, where the average age is 83.
facilities, shops and public transport, as well Sadly, many young people have lost friends
as have access to 24-hour on-call support. time and time again in the nursing home.
Residents will be able to choose to live either
by themselves, share with another person Says BBL Ambassador Vicky Smith, who
(who may or may not have a disability) or live lived in a nursing home for 23 years,
with their partner and children. In countries
such as Canada, integrated models of housing “having five people i lived
have been operating for more than 15 years. with die in one year —
i couldn’t handle that.”
Another possible comment,
you are putting down
nursing homes and that is
wrong.
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37. Allies
The following are people/groups that have re-tweeted about BBL:
Every Australian Counts ndis Campaign, @EveryAustralian
Graeme Innes, Australia’s Disability Discrimination Commissioner, @Graemeinnes
Human Rights Australia, @AusHumanRights
Stella Young, ABC Ramp Up Commentator, @stellajyoung
ABC Ramp Up, @ABCRampUp
James O’Brien, ndis State Campaign Coordinator - Vic & Tas @jpobrien74
Carers Victoria @CarersVictoria
The Project, @theprojecttv
Pro Bono News, @ProBonoNews
if you are unsure how best to respond, then don’t.
Follow up with Kate Carmichael via SMS or email.
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38. About the Summer Foundation
Established in 2006, the Summer Foundation aims
to resolve the issue of young people in nursing homes
by working to change human service policy and
practice. The Summer Foundation utilises a range of
strategies to influence health, housing and disability
services policy and practice related to this target
group. The three key areas of focus are:
Research: Conducting and fostering research
that provides an evidence base for policy
change
Creating a movement: Supporting people
with disability and families to tell their story,
raise awareness and keep the issue on the
political agenda
Housing: Increasing the range and number of
supported accommodation options.
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39. The Summer Foundation
The combination of Summer Foundation co-written by ceo Dr Di Winkler and Research
research and the Building Better Lives Manager Libby Callaway, with another 10
campaign is a powerful synergy that is having articles published on various news websites.
a significant impact on disability policy. For Two websites had links to specific digital stories
example, on July 9, the Summer Foundation of young people with disability that featured
released a report, funded by the Victorian in the BBL Digital Story Exhibition. Summer
Government, called the Evaluation of quality Foundation staff participated in 11 radio
of life outcomes of the Younger People in interviews, two of which involved Ambassador
Residential Aged Care Initiative in Victoria. Adam Greaves and another that involved the
parents of a young man in a nursing home.
Media coverage of this research included a
story on Channel Ten’s The Project (24/7) and Media coverage is critical for translating
articles in the Sydney Morning Herald (25/6) the findings of research undertaken by the
and the Bendigo Advertiser (9/7) featuring Summer Foundation into disability policy.
stories of Building Better Lives ambassadors.
The Conversation, On Line Opinion and ABC’s
Ramp Up published Opinion Pieces written or
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40. Further information
Information Online Opinion/Forums
www.buildingbetterlives.org.au www.apo.org.au
www.summerfoundation.org.au
www.abc.net.au/rampup
www.everyaustraliancounts.com.au
www.carersvic.org.au www.theconversation.edu.au
www.brainlink.org.au www.onlineopinion.com.au
www.un.org/disabilities www.probonoaustralia.com.au/news
www.dhs.vic.gov.au/disability
www.aihw.gov.au
Reports
Australian Government (2009) Shut out: The experience of people with disabilities and their families in
Australia Canberra: Commonwealth of Australia.
Winkler, D., Farnworth, L., Sloan, S., & Brown, B. (2010) Getting out: Mid-term Evaluation of the National
Younger People in Residential Aged Care Program. Melbourne: Summer Foundation Ltd.
Winkler, D., Holgate, N., Sloan, S. & Callaway, L. (2012). Evaluation of quality of life outcomes of the Younger
People in Residential Aged Care Initiative in Victoria. Melbourne: Summer Foundation Ltd.
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