Karista Blog

Useful news and information from the health care community

A website that connects aged and disabled consumers with service providers.

Filtering by Tag: disability

What it means to me to have Dylan Alcott as Australian of the Year

I welled up with the news that Dylan Alcott had been named Australian of the Year and a tear or two escaped listening to his acceptance speech. It is the first time in the awards history that a person with a disability has been given the honour. In the 63 years since the award’s inception, not one disabled person has been recognised for their contribution to the country. Why had it taken so long for a person living with a disability to be acknowledged as being worthy of the award? I know the answer.

Just like Dylan Alcott spoke about in his acceptance speech, I too had a difficult time in school. I hated the fact that I was ‘different’. Kids most likely didn’t understand that having a limp and a wonky eye was ok, instead they chose to punish me for my differences. I also remember, seeing the graphic TAC ads and wondering why they were showing people in hospital crying. Why was being in a wheelchair or attending rehab so awful? I spent a long-time in hospital and had been in wheelchairs and I knew that it was ok. Maybe not the most fun thing for a 10-year-old but it was still ok. It wasn’t just Dylan and me seeing those ads, it was many young and vulnerable people. While the message about the consequences of drink driving or speeding was a good message and it hit home in a graphic way, it was the depiction of disability as something to pity and avoid at all costs. Nobody wanted to be in hospital for the rest of their lives, did they?

As I got older, I thought that people would start to see me for the person I am and not just my disability. Going out with friends to bars or clubs, there would inevitably be one idiot who would ask what was wrong with me and why didn’t I just fix it. It wasn’t just a few drunks on a Saturday night either. I’m regularly asked by people in my day-to-day life ‘what’s wrong with me’, or why I use my walking stick. Sometimes, if I’m in the mood I might make a joke and say it was an old footy injury. Recently, I’ve had several people, particularly in shops make loud remarks about how fabulous my walking stick is (it is fabulous). Whether this is an attempt at conversation, or they think they’ve got a better chance of a sale, I don’t know. It may also be good natured and well-intended. With all of that in mind I smile and say something about how great it is and ‘well if you’ve got have one it might as well be a good one’. Occasionally, when asked what is wrong with me, I’ll tell them I have rheumatoid arthritis. Oh, they say – my grandma has that. I nod and wait for the next comment, which is inevitably, what grandma did to fix her arthritis. Not all arthritis is the same by the way. Osteoarthritis is common in older people while Rheumatoid is an autoimmune disease. Internally, I am groaning and hoping my face does not give me away. Why after 40 years of living in this body, do I still have to smile and nod at people commenting on my body when they don’t have a medical degree? Why? Why do people think it’s ok to ask a stranger about their medical history and then offer up a cure or remedy? Sorry mate but having a cold shower twice a day does not cure rheumatoid arthritis.

While the national employment rate for working-age able-bodied people has remained reasonably steady at around 80%, the employment rate for working-age disabled people is around half that *. I can understand why this is. Fronting up for a job interview with a walking stick can be confronting. I’ve seen potential employers looking perplexed about what they are going to do with me. Even when I was successful, I was told that I didn’t have quite the right ‘look’. There was also the memorable time when I was sent by a recruiter to an office with steep stairs which would have been difficult once a day but even more so when it had to be done as part of the job. This happened to me twice, for two separate jobs – with the same recruiter. I’d explained about stairs being an issue and frankly it’s obvious there might be an issue when a client walks into your office with a walking stick. But the recruiter hadn’t taken the time to ask one question. One question was all it would have taken to save me the embarrassment of telling a potential employer that I couldn’t even do the interview as there was no way I was getting up two flights of stairs with no handrail. While I’m only a small case study, it is obvious that there are barriers to employment for disabled people. As much as some government ministers might like the public to think it, no one wants to be on the pension all their lives. Disabled people want the opportunity to participate in the workforce just like everybody else. It should and can be possible. With diversity and inclusion major talking points for big companies – disability must be part of that conversation too. I am so hopeful that having Dylan Alcott speaking about disability employment in front of the nation on Tuesday night will spark new understanding from employers that disabled people are here and waiting to get into jobs.

When I was little, I wanted to be Tina Turner. I wanted to be Tina Turner not just for the voice, outfits or moves but because she was so energetic and confident. There were never any girls like me on the telly. The person I saw on television that I related to the most was Eve van Grofhorst. Eve was the first person in Australia to be diagnosed with HIV after receiving a contaminated blood transfusion at the height of the AIDS epidemic. With AIDS being new and not understood well, Eve and her family were hounded out of their NSW home as fears that Eve might infect children at her kinder became hysterical. The hysteria became so bad, the family moved to New Zealand where they were warmly welcomed. What I remember most about that time is that I felt like Eve did. I remember thinking I looked a little like her - I was also born prematurely and I could see myself in her. The kids at school used my apparent AIDS diagnosis as another form of bullying. This is why representation matters. No little girl should have to feel like an outcast through no fault of her own.

What Dylan Alcott is doing just by being visible is making disability a normal part of life. He is showing us that it is more than possible to live an enriched, happy life and have a disability. Sure, you might have your bad days but you’re not going to spend the rest of your life crying at physio or hospital ward. I hope too that having him in the public space will open more doors for people like me and will maybe stop the ‘meaning wellers’ from telling me about grandma’s cure-all. Like Grace Tame has done for survivors of childhood sexual abuse, Dylan Alcott will be able to start a conversation about what living with disability is like and how others can be an ally rather than a hindrance.

*Employment statistics can be found in the Australian Institute of Health and Welfare website

Susy walking in the Dandenong Ranges with her husband

Susy walking in the Dandenong Ranges with her husband

How can physiotherapy support someone with a disability?

lewis-dog.png

The NDIS brings an opportunity for Physiotherapists to support people of all ages with physical conditions like Cerebral Palsy, Multiple Sclerosis or with lifelong injuries such as Spinal Cord Injury or Acquired Brain Injury. Also, people who have activity restrictions caused by non-physical conditions such as intellectual or psychosocial disability or autism can benefit from physiotherapy.

The possibilities are endless, but a good Physiotherapist always starts with the person and what they want to be able to do that they can’t do already, and where they want to head in life.

Once a goal is set, such as joining a local sports club or entering the workforce, an assessment helps understand where a person is now, and what barriers they face in achieving those outcomes. This helps to create an individually tailored interdisciplinary therapy plan to achieve those outcomes, which is often focussed on building opportunities for people to practice newly developed skills within their everyday routine.

For example, Physiotherapy can support a young man who is living with Autism who loves moving and has many sensory needs and preferences. Let’s say that young man finds sitting still for mealtimes a real challenge. His family would love for him to join them for a family meal at a restaurant when they can. A Physiotherapist will look at his mealtime set up at home, and his daily routines. They then identify motivating opportunities to incorporate movement safely into his routines, both before and during mealtimes. These strategies, as a part of an interdisciplinary approach, can help this young man to sit and eat for longer periods with his family.

How physiotherapy helped Lewis achieve his goals

Trish Hill, a passionate Everyday Independence Physiotherapist with extensive experience in Paediatrics, talks about how she supported Lewis to achieve his goals.

“Lewis is a young man living with Cerebral Palsy who I’ve been supporting since he was in Prep. He moved to warmer pastures in the Gold Coast last month, but thanks to our Everyday Independence team, he’s been able to keep his supports consistent and doesn’t have to start all over again. I’m still supporting him online until he gets settled, and then it’s high school next year for him! He’s pictured here with his dog Melody, who is having a ride in his wheelchair.”

Does your client need a Physiotherapist now?

We have Physios with immediate availability in most metro areas. Search now!

NDIS Launches First Ever Employment Strategy

The NDIS announced today, the launch of the first ever NDIS Employment Participation Program.

The strategy sets a goal to have 30 per cent of working age NDIS participants in meaningful employment by 2030.

National Disability Insurance Scheme Minister, Stuart Robert, said “This strategy is all about giving more people with disability, who have the desire and capacity to work, better access to the right supports to achieve their employment goals while breaking down barriers that they face trying to get a job”.

Using the announced strategy as their guide, the NDIA will work towards removing barriers for those wanting employment and assist participants to set and accomplish their own goals. NDIS participants and Planners will be encouraged to discuss from the beginning of their NDIS journey what, if any, employment goals they may have.

The five key areas of focus for the new Employment Strategy will be:

  • Increase participant aspiration and employment goals in NDIS plans

  • Increase participant choice and control over pathways to employment

  • Increase marketing innovations that improve the path to paid work

  • Improve confidence of employers to employ NDIS participants

  • NDIS to lead by example as an employer

Source: NDIS

Business for Everyone.jpg

ANOTHER YEAR BITES THE DUST: 2018 WITH THE NDIS by DSC

It is that time of year again. It is officially acceptable to have put up your Christmas tree and to be candidly counting down the days on your calendar until the work year is over. Your body might still be in the office, but your mind has probably already checked-in to an all-inclusive Pacific resort that boasts of a generous happy hour and little-to-no climate change related disturbances. You’re living the dream.  Well, almost.

While our eyes might firmly be on the prize, the year is not over yet. And if there is one thing this time of year lends itself to more than season’s greetings and absent work hours, it is reflection. In that spirit, we thought we would take a brief moment to reflect on the NDIS year that has (almost) passed.

NEW PARTICIPANT PATHWAYS

The year began on a positive note with the release of the Pathways Review, which acknowledged that the NDIS had fallen seriously short of community expectations in the ways it interacted with Participants, families and providers. The Review promised the end of the phone planning era- which to everyone’s complete astonishment had apparently not been a resounding success.  As part of a sweeping set of reforms, we were promised a new Provider Pathway and General Participant Pathway, as well as cohort specific pathways for children under six, people with complex support needs, people with psychosocial disabilities, people from Aboriginal and Torres Strait Islander communities, people living in remote or very remote communities, and people from culturally and linguistically diverse backgrounds. Since then, the NDIS website has also alluded to a LGBTQIA+ pathway. You can read more about the Pathway Review in our article from February.

The new General Participant Pathway has been trialed in Victoria. The NDIA deemed the trial a success and (we are told) the Pathway will soon roll out across the rest of the country. However, the cohort specific pathways have been moving at a considerably slower pace.  In October, the Agency began running workshops to learn about the needs of these cohorts. In November, it was announced that the Complex Support Needs Pathway would commence its rollout, beginning in Brimbank-Melton and Western Melbourne. So progress is a bit slow, but still:

INDEPENDENT PRICING REVIEW

 Also in February (it was a busy, hopeful and dreamy age), McKinsey & Company released their hotly anticipated Independent Pricing Review (IPR). The review was designed to explore the challenges that the NDIS provider market faced and to make recommendations to avert market failure. Amazingly, the Agency gave its support to all 25 of the IPR’s recommendations. Some of these were implemented in the 2017/18 Price Guide, including a 2.5% Temporary Support Overhead (TSO) and new rules about provider travel and cancellations. Last week, the NDIA also announced a new pricing tier for self-care, social and recreational support for Participants with "very complex" support needs. Unfortunately, they are yet to define what “very complex support needs” actually means. Details, huh?

QUALITY AND SAFEGUARDING

Year 2018 was a huge one for quality and safeguarding, beginning in February with the establishment of the Quality and Safeguarding Commission. There is now officially a new sheriff in town and his name is Commissioner Graeme Head (get it, “head”?). Jury is still out on how well he responds to jokes about his name, but from then on, the Commission became the gift that kept on giving. We got a new Code of Conduct, Practice Standards, draft Practice Guidelines and a new portal. All this only just in time before NSW and SA transitioned to the Quality and Safeguarding Framework in July 2018. A lot has been happening in this space in a short amount of time. It’s a bit of a pain in the short term, but when we finally have a nationally consistent quality and safeguarding regime it will (hopefully) all be worth it. 

SDA AND SIL

It has been a rollercoaster of a year for Specialist Disability Accommodation (SDA) and Support Independent Living (SIL). It began in April with the release of the SDA Provider and Investor Brief, a document our consultant Brent Woolgar described at the time as full of “new contradictions, new terminology, new risks, new uncertainties.” From this low point, the NDIA did manage to repair some of the damage throughout the year with the release of new data and information that offered providers a bit more market clarity. We are now waiting on the final, DRC endorsed outcomes of the SDA Framework Review which is due late January 2019 (so we can probably expect it some time in August). In the SIL space, the new Quoting Tool released in September (only two months late) has transformed an exceptionally complicated and resource intensive quoting process into a fairly complicated and resource intensive quoting process. It’s all about those baby steps. On a more positive, less sarcastic note, there is a real optimism emerging within the SDA market and we are quietly optimistic that 2019 is the year SDA takes off.

THE NDIS TURNS 5

 This year marked the 5th Birthday of the NDIS. While the Scheme is still young, it is growing up fast. Slowly, it is beginning to form its own character, values and traditions. It will not be long before the NDIS is a teenager and starts pretending it does not know us in public. Before that day comes, we need to make sure we are taking every opportunity we are given to create a better NDIS. Particularly, opportunities that arise through pug related gifs.

Moving image: With a tear falling from his eye, a pug looks down at a birthday cake marked "NDIS" and cannot bring himself to blow out the candle.

Year 2018 has been a busy one for the NDIS. As the rollout continues and the Scheme matures, we can probably expect there to be many more like it. But now is not the time to worry about what the new year will bring. It is nearly Christmas after all. Presents and public holidays await you. So, for the time being, let your mind travel back to that beautiful Pacific island and forget all about those four pesky letters: N-D-I-S.   

From all of us at DSC: enjoy your well earned break and have a happy new year.

2018.PNG

Celebrating International Day of People with Disability with Dylan Alcott

International Day of People with Disability is a United Nations sanctioned day. It aims to increase public awareness, understanding and acceptance of people with disability and celebrate their achievements and contributions.

The theme for 2018 is ‘Empowering persons with disabilities and ensuring inclusiveness and equality’. According to the United Nations, 2018’s theme focuses on empowering people with disabilities for an inclusive, equitable and sustainable development.

Here at Karista, we are big fans of Dylan Alcott and the positive message he spreads about being a person with a disability. Dylan embodies 2018’s theme with his mission to help young people come to terms with their disability and help them to reach their full potential.

Through his sporting career, media and speaking engagements, Dylan is showing the world that people with a disability can do anything and are only limited by their imagination. By being a visible presence in Australia, Dylan is helping to normalise disability and remove stigma.

If you’d like to read more about Dylan Alcott, follow the links to a recent Guardian profile and the Dylan Alcott Foundation.

If you’d like to find out more about IDPwD and events happening near you click here

Sources: The Guardian, International Day of People with Disability and the Dylan Alcott Foundation.

Photo Courtesy of Vogue Australia

Dylan Alcott.JPG

National Diabetes Week

This week marks National Diabetes week, did you know that Diabetes is one of the 8 major chronic diseases Australians live with?  A chronic disease is acknowledged as a long lasting condition with persistent effects and social and economic consequences.

If you are living with diabetes and need help at home please visit Karista to find services in your local area.

Facts About Diabetes

  • 280 People develop Diabetes every day - that's one every five minutes
  • Around 1.7 million Australians have diabetes which includes all types of diagnosed diabetes and a silent, undiagnosed type 2 diabetes
  • For every person diagnosed with diabetes there is usually a carer or family member who also lives with Diabetes

What is Diabetes?

When you have diabetes, your body can't maintain healthy levels of glucose (a form of sugar) in the blood.  For our bodies to work properly we need to convert glucose from food into energy. A hormone called insulin is essential for the conversion of glucose into energy. In people with diabetes, insulin is no longer produced in sufficient amounts. When people with diabetes eat glucose, which is in foods such as breads, cereals, fruit and starchy vegetables, legumes, milk, yoghurt and sweets, it can’t be converted into energy.

Instead of being turned into energy the glucose stays in the blood resulting in high blood glucose levels. After eating, the glucose is carried around your body by your blood; blood glucose level is called glycaemia. Blood glucose levels can be monitored and managed through self care and treatment.

Different Types of Diabetes

Type 1 Diabetes

Type 1 diabetes is an auto-immune condition in which the immune system is activated to destroy the cells in the pancreas which produce insulin.  We don't know why this happens, Type 1 diabetes is not linked to lifestyle factors.  There is no cure and it cannot be prevented.

Type 2 Diabetes

Type 2 diabetes is a condition where the body becomes resistant to the normal effects of insulin and or gradually loses the capacity to produce enough insulin in the pancreas.  We do not know what causes Type 2 diabetes but do know that lifestyle, genetics and family are related risk factors.

Gestational Diabetes

Gestational diabetes mellitus (sometimes referred to as GDM) is a form of diabetes that occurs during pregnancy. Most women will no longer have diabetes after the baby is born. 

Gestational diabetes is the fastest growing type of diabetes in Australia, affecting thousands of pregnant women. Between 12% and 14% of pregnant women will develop gestational diabetes  usually occurring around the 24th to 28th week of pregnancy. All pregnant women should be tested for gestational diabetes at 24-28 weeks of pregnancy (except those women who already have diabetes). 

Source: Diabetes Australia and Australian Institute of Health and Welfare

Where can I get help?

If you are concerned that you or someone you care for may develop Diabetes, please see your GP for a check up.

If you're interested in reading more about the three main types of diabetes, a good place to start is Diabetes Australia website, or the Baker Institute 

Karista if you are looking for support and services in your local area.

 

Diabetes_shutterstock.jpg

Original Life Hackers - How Disability Created innovative design

It was 1988 when Betsey Farber found herself hacking through a dried-up nest of wild thyme in the backyard of a rental home in Provence. The scene was aromatic and picturesque, except for the pair of children’s scissors she’d stuffed her grown-up knuckles through. She couldn’t find anything better for the job. Who is going to leave their good kitchen tools in a rental? She had just finished disassembling an unbudging pepper grinder, soaking the rusted metal parts in a glass of Coca-Cola so she could season dinner.

Betsey and her husband, Sam, began to scour local hardware stores and weekend markets for better kitchen tools. But kitchen supply offerings were limited to slender, pointed, gripless products. What Betsey was hoping to find were more like the hand tools that New England Shakers had crafted a century before, with their beautifully and purposeful tactile handles. Sam, who had started a successful housewares business in 1960, began to plan a new line of kitchen tools with Betsey that would feel good, not just in her hand but in anyone’s hand. That was the genesis of the cooking tools and housewares company OXO, established in 1990.

Since then OXO has become a nearly universal example of universal design, a concept that strives to produce products and spaces accessible to everyone, disabled or not. It produces more that 1,000 products sold globally.

But in learning about Betsey and OXO, something caught my eye. This is from the OXO Blog: “Sam Farber founded OXO when he saw his wife, Betsey, having trouble holding her peeler due to arthritis. This got Sam thinking: Why do ordinary kitchen tools hurt your hands? Sam saw an opportunity to create more thoughtful cooking tools that would benefit all people (with or without arthritis) and promised Betsey he would make a better peeler.”

As a disabled designer, I have come to believe that products are a manifestation of relationships. Disabled people have long been integral to design processes, though we’re frequently viewed as “inspiration” rather than active participants. When I discovered Betsey was a talented architect in her own right, I began to wonder about her relationship to OXO. And so I reached out to ask.

When Betsey and I finally met, we quickly began doing exactly what my disabled friends and I do — we shared our life hacks, the creative ways we alter things to make them more accessible. I told her about the dancer and writer Jerron Herman who orders a pizza cutter with his waffle at the local diner, which works much better for him than a knife and fork, and Emily Ladau who uses kitchen tongs to extend her reach. Betsey told me about the time she wired the jar opener that was affixed to the bottom of her cabinet to a cheese grater so she could hold it in her hand. When Betsey and Sam sold OXO in 1996, the OXO Good Grips Jar Opener was their No. 2 product, second only to their peeler.

Our conversation left me wondering when a hack becomes more than a hack and turns into something of commercial value. And moreover, I wanted to know why these inventions aren’t routinely written into disability history.

Such stories reach back centuries and continue on to the present day, but they often go untold. For instance, you probably have not heard of Stephan Farffler, the Nuremberg-based watchmaker and paraplegic who in 1655 created what he called the manumotive carriage. Farffler accomplished two things with his invention; he created the first self-propelled wheelchair, and unbeknown to him, it became the precursor for the modern-day bicycle.

Today, the technologies we use often come from people like Wayne Westerman, who as an electrical engineering doctoral student at the University of Delaware in the late 1990s was experiencing symptoms of repetitive stress syndrome that interfered with his ability to study and work. With his adviser John Elias, he went on to help develop touch-screen technologies and establish a company called FingerWorks, which would pave the way for the tablet and cellphone revolution that shapes most of our lives today. If you are reading this piece on your phone right now, you may want to thank Westerman. Steve Jobs bought FingerWorks in 2005, and it led to the iPhone touch screen.

These stories exemplify what it means to be an original lifehacker; our unique experiences and insights enable us to use what’s available to make things accessible. Yet, despite this history of creating elegant solutions for ourselves, our contributions are often overshadowed or misrepresented, favoring instead a story with a savior as its protagonist.

This was the case with OXO. “The general understanding,” Betsey told me, “was of the brilliance and kindness of Sam who made these tools for his poor crippled wife so she could function in the kitchen. I will probably go down in history as having arthritis rather than having the conceptual idea of making these comfortable for your hand.”

This predominant narrative that disabled people are only recipients of design has managed to embed itself into our language. The phrase “design for disability” yields many more Google search results than “disability design.” OXO may think its handle fixes us, but I see the lack of attribution as the disabling issue.

When people like Betsey take credit for their contributions, it allows someone like me to take ownership of mine. This is how we attract disabled people to design.

Betsey now lives in what she calls an elder community. A group of designers recently asked her and a few of her neighbors to test a gripping tool prototype. As Betsey was trying it out, she thought of her OXO Jar Opener and told the designers, “You know, if you put the grip on one side instead of both, it will be lighter and more efficient.” They took her advice. I asked Betsey if they had any idea who she was. Laughing, she said no.

It is my hope that they know now, and that one day everyone will know what we do.

Liz Jackson is the founder of The Disabled List, a disability design self-advocacy organization, and WITH, a fellowship that helps match creative disabled people with design studios and other organizations.

merlin_138675858_3450f0e0-bba4-48f0-a77f-0738b9309ebd-jumbo.jpg

Meet Tess: the mental health chatbot that thinks like a therapist

Therapy robots are an accessible option for caregivers who are busy assisting others but could use their own care.

 Source: The Guardian

Most days, Jillian Bohac feels overwhelmed. After her husband was hit by a truck while riding his bike, he suffered a brain injury that produced so many clots, she says, that it “looked like a night sky” on the CT scan. Once the most independent man she knew, he now needs help putting on his shoes. Bohac, a social worker, is now a full-time caregiver for her husband. “I’ve gained weight, lost all my friends, have anxiety – I’m a mess,” she says. “My focus is him, 100%. As a social worker, you’d think I’d know better, but it sneaks up on you, the self-neglect. You’re aware you have needs, too, but it just doesn’t work out that way.” When asked if there are enough supports out there for family caregivers, she is adamant that there are not.

Bohac is not an outlier. As of 2012, according to Statistics Canada, over 8 million Canadians provided care to a chronically ill or disabled friend or loved one. The country has an ageing demographic and an increasing number of long-stay home-care patients, so the number of older people in Canada who could need the assistance of caregivers, informal and professional, is growing. Many caregivers say they don’t have money to hire private care or a support network. For those in the middle of their careers who can’t afford to quit, government-funded programs that provide caregivers help from nurses and personal support workers become increasingly important. But those resources aren’t always immediately accessible to caregivers, and the system can be backlogged, depending on the area where a patient lives.

Tess is a mental health chatbot. If you’re experiencing a panic attack in the middle of the day or want to vent or need to talk things out before going to sleep, you can connect with her through an instant-messaging app, such as Facebook Messenger (or, if you don’t have an internet connection, just text a phone number), and Tess will reply immediately. She’s the brainchild of Michiel Rauws, the founder of X2 AI, an artificial-intelligence startup in Silicon Valley. The company’s mission is to use AI to provide affordable and on-demand mental health support. Rauws’s own struggles with chronic illness as a teenager brought on a depression that led him to seek help from a psychologist. In learning to manage his depression, he found himself able to coach friends and family who were going through their own difficulties. It became clear to him that lots of people wanted help but, for a number of reasons, couldn’t access it. After working at IBM – where he worked with state-of-the-art AI – Rauws had his “aha” moment: if he could create a chatbot smart enough to think like a therapist and able to hold its own in a conversation, he could help thousands of people at once and relieve some of the wait times for mental health care.

It was precisely that potential that caught the attention of Saint Elizabeth Health Care. A Canadian non-profit that primarily delivers health care to people in their own homes, Saint Elizabeth recently approved Tess as a part of its caregiver in the workplace program and will be offering the chatbot as a free service for staffers. This is the first Canadian health care organization to partner with Tess and the first time that Tess is being trained to work with caregivers specifically. “Caregivers are really great at providing care. But they are challenged at accepting care or asking for help,” says Mary Lou Ackerman, vice president of innovation with Saint Elizabeth Health Care. And there’s no doubt that many need support, given the high rates of distress, anger and depression. Caregivers often juggle their duties with their careers and personal responsibilities. The mental planning can take its toll. They might be in charge of, for example, organizing rides to appointments, making sure their spouse is safe when they run out to get their medications, clearing snow from the wheelchair ramp and checking their spouse does not fall while going to the bathroom at night.

To provide caregivers with appropriate coping mechanisms, Tess first needed to learn about their emotional needs. In her month-long pilot with the facility, she exchanged over 12,000 text messages with 34 Saint Elizabeth employees. The personal support workers, nurses and therapists that helped train Tess would talk to her about what their week was like, if they lost a patient, what kind of things were troubling them at home – things you might tell your therapist. If Tess gave them a response that wasn’t helpful, they would tell her, and she would remember her mistake. Then her algorithm would correct itself to provide a better reply for next time.

One of the things that makes Tess different from many other chatbots is that she doesn’t use pre-selected responses. From the moment you start talking, she’s analyzing you, and her system is designed to react to shifting information. Tell Tess you prefer red wine and you can’t stand your co-worker Bill, and she’ll remember. She might even refer back to things you have told her. “One of the major benefits of therapy is feeling understood,” says Shanthy Edward, a clinical psychologist. “And so if a machine is not really reflecting that understanding, you’re missing a fundamental component of the benefits of therapy.”

In your very first exchange with her, Tess will make an educated guess – drawing on the other conversations she has had with people and with the help of algorithms – about which form of therapy might be most effective. That doesn’t mean she’s always right. If her attempted treatment – say, cognitive behavioural therapy – turns out to be wrong, she’ll switch to another one, such as compassion-focused therapy. How does Tess know when she’s wrong? Simple: she asks. “Tess will follow up on issues the user mentioned before or check in with the patient to see if they followed through on the new behaviour the user said they were going to try out,” says Rauws.

Tess’s great value is accessibility. Many caregivers found Tess convenient to talk with because she could be reached at any time – something they don’t have a lot of. “Caregivers say they can’t get out of their home. They’re so boggled with so many things to do,” says Theresa Marie Hughson, a former shelter worker who had to retire from her job three years ago to care for her relatives, including her husband, who suffered from chronic pain for over 19 years before passing in July. Hughson, who’s from St John, New Brunswick, says that when she was really burned out from caring for her husband, she tried to use a mental-health service for seniors offered by the province. It took a month for her to get her first appointment. “There was nobody there when I was really having a struggle coping,” says Hughson.

It may be some time before we integrate chatbots fully into regular care. While she is trained to act like a therapist, Tess is not a substitute for a real one. She’s more of a partner. If, when chatting with her, she senses that your situation has become more critical – through trigger words or language that she has been programmed to look for – she will connect you with a human therapist. In other cases, she might provide you with the resources to find one. That said, many caregivers who chatted with Tess said they felt more comfortable opening up to her precisely because they knew she was a robot and thus would not judge them. Julie Carpenter, a leading US expert on human-robot social interaction, cautions against overestimating the effectiveness of mental-health algorithms. “I think we can come really far with AI as a tool in psychological therapy,” she says. “However, my personal opinion is that AI will never truly understand the subjective experience of a human because it’s not a human.”

Carpenter suggests that we have to recognize that chatbots are machines, despite their increasing sophistication. They do what we tell them to do. They think how we teach them to think. How well we reflect, and act, on what we learn about ourselves – what scares us, what calms us down – is largely up to us.

Some useful links for our young ones

shutterstock_149406659.jpg

It can be difficult to talk to children or young adults who are finding it hard to articulate their needs. Below are some easy to access online resources to help. Considering our young ones are so computer savvy sending them to links to assist in the process, or it could be something you access yourself to assist in the discussion. See below - some great links:

Bullying at work - WorkSafe Victoria - click here

Victoria Legal Aid - Workplace Bullying - click here

Kids Helpline – click here

Lifeline – click here

Beyond Blue - click here

Youth beyond Blue – click here

Headspace - click here

Youth Off the Streets - click here

Department of Health Victoria - click here

StreetSmart Australia - click here

Homelessness Australia - click here

Department of Health and Ageing - Mental Health - click here

Asperger Syndrome and Adults - Better Health Victoria - click here

Autism Victoria - click here

Autism Help – click here

What is important when searching for care for a loved one?

Whether you are looking for your child who has particular needs, or for your mum who is getting older and needs assistance with things at home, it is important to balance care with cost. It is without a doubt that care is most important but very few of us can afford to splash out testing and trying different services to understand what is best. So, reviews play a big part as does the quotation process. Karista allows carers to review providers, the services available and has implemented a star rating system. As the business is new it needs support from the community to get reviews. Help out your peers, or people like you, by rating your provider. Your opinion does matter, a review by you could mean the difference for the next person who is in a similar position to you. Search and review your provider in Melbourne or Geelong at www.karista.com.au

shutterstock_192268793.jpg

Search and review your provider