Social Media Toolkit

social media toolkit

This document has been prepared by

Kate Carmichael, Communications Manager, Building Better Lives

email: [email protected]

po box 208, blackburn 3130, victoria, australia

t 1300 626 560 (in aus) f +61 3 8456 6325

www.bbl.org.au

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.

BUILDING BETTER LIVES SOCIAL MEDIA TOOLKIT OCTOBER 2012

Abbreviations ii

What is Building Better Lives? 1

Why are young people in nursing homes? 3

What is Government doing about it? 5

What is the solution? 9

Three key messages 11

Quotes 14

Young People in Nursing homes • Statistics 16

Internet usage in Australia 17

Social media statistics 19

Social media example 1 • NDIS campaign 24

Social media example 2 • The Project 27

Scenarios 31

Allies 33

About the Summer Foundation 34

Further information 36

Contents

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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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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 young people with disability.

A cornerstone of Building Better Lives is the Ambassador Program. This program supports a group of young people with disability who are directly affected by the issue of young people in nursing homes to share their stories through a range of media including print, radio and television, and public speaking engagements with both community and corporate audiences.

Over the past 12 months, Building Better Lives has significantly increased its profile and successfully raised greater awareness of the issue of young people in nursing homes. The two major public events that attracted attention were the Home to Home Digital Story Exhibition in April at Fed Square, and the Run Melbourne event in July.

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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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Why are young people in nursing homes?

Due to significant advances in medical technology over the past 20 years, people who would have once died at the scene of a car accident or other trauma, are now surviving. The health and disability service systems have not done enough preparation or planning to account for this new and increasing population. From an acute hospital bed, the next step for the vast majority of people who find themselves in this situation, is nursing home care.

The majority of young people living in nursing homes have an acquired brain injury or a late onset neurological disorder – such as Multiple Sclerosis. Almost overnight the social networks, work or study routines, living

circumstances and leisure activities of these young people are gone.

Nursing homes are where people go to be cared for at the end stage of their lives, where the average age is 83. They are not set up nor resourced to cater for the needs of young people with disability, who may have 50 or more years to live. Staff in nursing homes have a certain amount of tasks to do in the most timely and efficient manner – they unfortunately do not have the time to wait for a person with a communication impairment to respond to a question.

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Young people like loud music, they want to go to bed when they want, have a say in what they want to eat, and go out if they feel like it. Sadly, these sort of everyday choices the rest of us take for granted are severely limited, if not available at all, in the nursing home environment.

“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

It is estimated that across Australia there are over 6,000 young people with disability living in nursing homes, with over 600 aged under 50 years. Each year in Victoria, 70 people are forced into this type of accommodation because there is simply nowhere else for them.

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What is Government doing about it?

In February 2006, the Council of Australian Governments (COAG) decided to implement a plan to get young people out of nursing homes. In July that same year, the Younger People in Residential Aged Care (YPIRAC) program began. In Victoria, the program was known as 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.

The program was an enormous success for those who participated in the program. However, now that the program has ended, there is no commitment from the State or Federal Government to provide funding for any more supported accommodation services.

National Younger People in Residential Aged Care (YPIRAC) Program

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On 17 July 2008, Australia was among the first western nations to ratify the United Nations Convention on the Rights of Persons with Disabilities (crpd).

Article 19 states ‘Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community, including by ensuring that:

(a) Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement;

(b) Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;

United Nations Convention on the Rights of Persons with Disabilities

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(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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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 live in the community (ie by providing supports such as carers, therapists etc). However, it 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.

National Disability Insurance Scheme (NDIS)

until then, what?

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What is the solution?

Current alternatives to nursing homes are largely based on a ‘group home’ concept, where the residents are expected to share a house with other people with disability. While clusters of units offer more privacy than a nursing home, they are still segregated from the general population. Most young people with disability would prefer to live in and be part of the community, and not in an institutionalised environment.

Integrated Housing Model

The integrated model of supported housing championed by Building Better Lives will have 6-10 accessible apartments spread throughout a larger residential development. There will be one apartment for disability support workers so that people living in the apartments will have access to 24-hour on-call support.

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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.

Hub with 24-hoursupport

One- or two-bedapartment

Integrated Housing Model

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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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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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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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Quotes

“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.”

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:

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“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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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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Internet usage in Australia

The FactsAccording to Nielsen Online, there were 15.6

million Australians using the internet in the month of July. Whilst Gen X (18-34 yrs) and 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.

7,791,000online users

7,820,000online users

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number of online australians by age group and gender

males 2-17

males 18-24

males 25-34

males 35-49

females 2-17

females 18-24

females 25-34

females 35-49

females 50+

males 50+

Source: Nielsen Online Ratings July 2012

7%

9%

14%

15% 5%

5% 16%13%

10%

6%

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Social media statistics

figures for australia as at august 2012

total users 11,454,200

% population 53.87%

% online population* 67.43%

gender split (m/f) 47% / 53%

largest age segment 25-34 (26%)

average time on site 21:40

Source: www.marginmedia.com.au and *www.socialbakers.com

figures for bbl facebook page as at 13 september 2012

total likes 3037gender split (m/f) 25% / 75 %largest age segment 35-44 (21.2%)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.

FacebookFacebook now has more than 950 million

people using the social networking service worldwide each month, with 543 million accessing it via a mobile device, which is a whopping 67% increase over the past 12 months.

In Australia, the figures for August state that there are almost 11.5 million Facebook users, which represents 54% of the population, and ranks Australia 21st in the world with regards to numbers of people using this social media platform.

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TwitterTwitter has 500 million registered users

worldwide, however according to a recent study1, only 34% of them are active (have made a change to their account within a 3-month period).

1 Study completed by French analytics firm Semiocast in July 2012.

figures for australia as at august 2012

total users 1,800,000

% population -

gender split (m/f) 66% / 34%

largest age segment 45-54 (35%)

average time on site 10:50

Source: www.marginmedia.com.au

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LinkedInLinkedIn has over 175 million users

worldwide, with over 2 million LinkedIn company pages.

LinkedIn Australia estimates that there are approximately 4.8million professionals in Australia, with over 60% using LinkedIn.

figures for australia as at august 2012

total users* 3, 241, 470

% population* 15.24%

% online population* 19.03%

gender split (m/f) 59% / 41%

largest age segment 45-54 (37%)

average time on site 8:50

Source: www.marginmedia.com.au and *www.socialbakers.com

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YouTubeYouTube is the second largest search engine

in the world, with about 2 million searches per day and an unbelievable 72 hours of video content uploaded to the platform every minute. (Margin Media)

figures for australia as at august 2012

total users 11,00,000 uav

% population 48.44%

gender split (m/f)

largest age segment

average time on site 18:20

Source: www.adcorp.com.au

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Other Platformsfigures 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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Social media example 1 • NDIS campaign

Case 1 • NDIS campaign

There has been a lot of media coverage in the past 6 months about the campaign for a national disability insurance scheme (ndis); which governments will support it (currently only Qld has not agreed to participate in the national scheme) , and what it will mean for people with disability in Australia.

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

car registration, you will receive rehab and other services and will most likely move into shared supported accommodation, not a nursing home. If you fall off your bike or skateboard and suffer the same type of injury, more often than not, nursing home care will be the default option.

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the implementation of the ndis will mean that all people with disability, regardless of how they acquired that disability, will get equal access to services that are needed.

for many, this can’t come soon enough.

The Every Australian Counts campaign has been leading the call for governments to act, and Building Better Lives has been integral to this, with our campaign imagery featuring on their website. Every Australian Counts is hoping to sign-up 200,000 supporters (currently around 130,000) and in each e-newsletter BBL sends out, a reminder to register is highlighted.

Case 1 • NDIS campaign

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Whilst the disability sector is still trying to figure out how exactly the system will operate, and what will be included or excluded, whenever and wherever the ndis is mentioned, we need to respond with these points:

• the ndis is not a silver bullet. it will not fix everything. young people in nursing homes need to have other accommodation options.

• the full ndis will not be rolled out until 2018. what happens to the people who need services now?

Case 1 • NDIS campaign

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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 that ended in June 2011. Whilst in the nursing home, Ben didn’t talk, and was fed through a tube. After moving out, he has started eating and talking again - his mother couldn’t believe 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.

Social media example 2 • The Project

Contrasting the stories of Ben and Shannon perfectly highlighted the case for getting young people out of nursing homes and into more home-like environments where they have the opportunity to reach their potential.

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What did BBL do?

With the coag meeting on the ndis scheduled for the day after the airing of the segment, BBL sent out an email to everyone on our newsletter subscriber list (approx 2500) asking them to ‘make as much noise as possible about the injustice of young people being forced to live in nursing homes because there is nowhere else for them. We want the state, territory and federal governments to commit to the full implementation of the ndis.’

BBL asked supporters to:

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.

Case 2 • The Project (Channel 10)

FACEBOOK Share the posts from Building Better Lives on your own profile page and ask your friends to also share your post.

TWITTER Follow both @theprojecttv and @BBLcampaign and get your fingers working during the program!

JOIN The Project Online forum (choose The Project stories and other news) so that you can make a comment while the story is airing.

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Our key messages

• Nursing homes are simply the wrong place for young people with disability

• We need commitment from state and federal governments to fully implement the NDIS at COAG

• We need to stop new admissions of young people to nursing homes

• We need to build more housing options for the 3000 young people still in nursing homes

• Slow-stream rehabilitation maximises potential and decreases life time care costs.

Case 2 • The Project (Channel 10)

Here’s what we’ll be tweeting Feel free to modify for your own use or simply re-tweet our tweets:

@theprojecttv story on Young People in Nursing Homes clearly shows why Australia needs to commit to the FULL implementation of #NDIS! #YPINH

We must stop young people from being admitted to nursing homes in the first place #YPINH #NDIS @theprojecttv

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Case 2 • The Project (Channel 10)

#NDIS isn’t a silver bullet. More housing options have to be built for young people in nursing homes. #YPINH @theprojecttv

@theprojecttv all people with #ABI should have access to rehab, 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 --

BBL also promoted the airing of the segment on Facebook, Twitter and LinkedIn.

By giving supporters specific guidelines, it was found that the take-up was much higher than if a general email had been sent out about the television program.

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Scenarios

A fundamental part of the BBL campaign is educating and informing the wider community about what young people with disability (and their families) want as alternatives to aged care nursing homes.

One idea that members of the public have suggested often enough to warrant inclusion here is that of a nursing home built specifically for young people. A post on the BBL Facebook page said,

cant we get a group of people together and invest in building a home for the young ones? it cant be that hard really????

Engagement with Others

Whilst the enthusiasm to do something is appreciated, we need to let the person know that young people with disability do not want to live in institutions. They want to be part of the community. A suggested response would simply be:

i don’t think that young people should be in institutions. they should be living in the community. they want to go to cafés, shops & sports events just like the rest of us.

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Engagement with Others

The Integrated Housing Model (see p.5) will be the first of its kind in Australia, where people with disability will live close to community facilities, shops and public transport, as well as have access to 24-hour on-call support. Residents will be able to choose to live either by themselves, share with another person (who may or may not have a disability) or live with their partner and children. In countries such as Canada, integrated models of housing have been operating for more than 15 years.

Another possible comment,

you are putting down nursing homes and that is wrong.

BBL is not saying that nursing homes are bad places, just the wrong place for young people with disability, where the average age is 83. Sadly, many young people have lost friends time and time again in the nursing home.

Says BBL Ambassador Vicky Smith, who lived in a nursing home for 23 years,

“having five people i lived with die in one year — i couldn’t handle that.”

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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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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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The combination of Summer Foundation research and the Building Better Lives campaign is a powerful synergy that is having a significant impact on disability policy. For example, on July 9, the Summer Foundation released a report, funded by the Victorian Government, called the Evaluation of quality of life outcomes of the Younger People in Residential Aged Care Initiative in Victoria.

Media coverage of this research included a story on Channel Ten’s The Project (24/7) and articles in the Sydney Morning Herald (25/6) and the Bendigo Advertiser (9/7) featuring stories of Building Better Lives ambassadors. The Conversation, On Line Opinion and ABC’s Ramp Up published Opinion Pieces written or

co-written by ceo Dr Di Winkler and Research Manager Libby Callaway, with another 10 articles published on various news websites. Two websites had links to specific digital stories of young people with disability that featured in the BBL Digital Story Exhibition. Summer Foundation staff participated in 11 radio interviews, two of which involved Ambassador Adam Greaves and another that involved the parents of a young man in a nursing home.

Media coverage is critical for translating the findings of research undertaken by the Summer Foundation into disability policy.

The Summer Foundation

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Further information

ReportsAustralian 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.

Informationwww.buildingbetterlives.org.au

www.summerfoundation.org.au

www.everyaustraliancounts.com.au

www.carersvic.org.au

www.brainlink.org.au

www.un.org/disabilities

www.dhs.vic.gov.au/disability

www.aihw.gov.au

Online Opinion/Forumswww.apo.org.au

www.abc.net.au/rampup

www.theconversation.edu.au

www.onlineopinion.com.au

www.probonoaustralia.com.au/news