Disability Horizons – A Dynamic Duo

If you love socialising, travel or adventure; then this is definitely for you!

In November 2010, two disabled guys from London, on a roadtrip in California, dreamt up a huge project they wanted to bring to the world. Imagine two lifelong friends, two electric wheelchairs, two Personal Care Assistants, a hoist and an accessible car stirring up a big cocktail of imagination and innovation, during a dream adventure.

This idea was to start an online disability lifestyle magazine like no other…

Martyn_Srin_SFAfter months of working hard to turn the vision into a reality; Martyn Sibley and Srin Madipalli launched www.disabilityhorizons.com. Disability Horizons pioneers an innovative 21st century approach to disability by empowering an aspirational community to provide and share content that informs, inspires and entertains.

The Disability Horizons community is already 20,000 strong. Their readers write the articles, share their wealth of disability knowledge and progress towards their individual dreams together. Articles include personal stories on employment, sport, travel and relationships. The guys share many of their own daring escapades and have regular article contributions from high profile organisations, service providers, politicians, celebrities, entrepreneurs and various opinion formers that have the power to shape and change lives.

There is a page for readers to pose their own questions, an area to post unwanted disability items (the classifieds section), a resources profile page for disability companies to share useful products/services, and the Disability Horizons ‘Travel Zone’.

In honour of the Paralympic Games, Disability Horizons has graciously agreed to share some of their stories with us. The insights continue to grow our understanding of how people around the world have common and uncommon experiences in managing life limiting conditions.  The Dynamic Duo at Disability Horizons are breaking new ground and give new meaning to the old phrase “walk the walk”.

 

  • Stories from Disability Horizons
  • Sparks of Change

    Posted on by Martyn Sibley

    25. Mar, 2015 Peaks and Troughs. Ebb and Flow. However much I strive for consistency, it always seems to evade me. Partly because I guess ‘that’s life’. Partly because I seem to like to mix things up! I tend to regularly kick off new challenges. From finishing 2014 tired, living back home, and struggling with a deterioration in my disability. I’m now in a new flat, building my health back up, and fighting (tooth and nail) for improvements on my wheelchair, car, care and housing adaptions. I was lucky to spend time in Fuerteventura and Austria since the New Year Read More…

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  • Discovering my last taboo

    Posted on by Disability Horizons

    By Ben Davies In this article I am going to explore the morality of paying for the company of a female or indeed male if you are a disabled person. But first I am going to talk about relationships and the potential barriers I feel exist as a disabled person. I personally really struggle with relationships and socialising full stop, whether it’s going the pub with the boys or chatting someone up. I simply cannot do it as my confidence in this area is really low. Overall I’m ok with the boys as we talk about football and drinking, the Read More…

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  • Max’s journey

    Posted on by Disability Horizons

    By Nicola @nickynoona My story is about my son Max who is now 12 years old and has Asperger’s Syndrome. Max was born a healthy 7lbs 10oz in the hot summer of 1999. From day one he was an easy baby. Always happy and placid and rarely cried or threw tantrums. I counted myself very lucky to have such a content child. Max was walking by 11 months old and was ahead of other children with his talking too. I was not worried about his development or behaviour in any way. Coming up to Max’s second birthday I had been Read More…

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  • Planning an accessible wedding

    Posted on by Disability Horizons

    By Carrie-Ann Fleming Almost 2 years ago, in November 2009, my boyfriend Darren surprised me with a candlelit anniversary dinner, which ended in a romantic proposal. I was ecstatic, and friends and family were thrilled for us. After celebrations came the questions about when we would get married, and what we were planning… which was a daunting prospect! As a wheelchair user, I really didn’t know where to start with all the preparations, how exactly do you plan an accessible wedding?! The first thing to decide on was the venue. We ruled out a church ceremony, as neither of us Read More…

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  • Matt’s marathon

    Posted on by Disability Horizons

    Matthew King from Bedford, who is about to start his career as a lawyer, completed the New York marathon in 2007 in his chin controlled powered wheelchair, which he uses as a result of a spinal injury. Matt kindly shares his experience of travelling to New York and taking part in the marathon. By Matthew King My name is Matthew King, and in 2004 at the age of 17 I broke my neck playing in a game of rugby, and have been left paralysed from the neck down and dependent upon a ventilator to breathe at all times and use Read More…

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  • The lasting effects of a temporary disability

    Posted on by Disability Horizons

    By Margo Milne Imagine you were born perfectly fit and able-bodied. As a teenager, you suddenly became severely physically disabled, but then you became able-bodied again. How would that affect your attitudes to disability and disabled people once you were an adult? When writer and broadcaster Hardeep Singh Kohli was 13, he came down with Guillain–Barré syndrome, a usually temporary condition that causes sudden paralysis, often triggered by infection. He was in hospital for 10 weeks, and it took him a year to learn to walk again. Lucy Pask, who runs the website Great Aunt, also had Guillain–Barré syndrome, in Read More…

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Jodeme Goldhar

 Jodeme GoldharJodeme Goldhar

Championing Healthcare Integration for Major Transformation – For Patients and the System

Jodeme Goldhar’s passion has helped healthcare organizations break out of their siloes to work together for a common goal – enhancing the care experience and outcomes for their most vulnerable clients.

She has had strong support from the (mostly female) leadership team at Toronto Central Community Care Access Centre (TC CCAC) particularly CEO Stacey Daub. Jodeme’s position as Lead for Health System Integration for Complex Populations and Primary Care has allowed her to facilitate a true partnership between organizations to develop and implement ICCP, a program which smooths transitions (for example, between home and hospital) and forms one care team around each client. Each team is quarterbacked by a TC CCAC care coordinator who communicates with team members and works with the client’s family doctor to develop a coordinated care plan – based on the priorities of the client and family caregivers.

ICCP began as a pilot project focussed on frail seniors, the 1% of patients who use 30% of healthcare resources. It brought together an unprecedented variety of healthcare organizations within the city of Toronto.

Jodeme often prefers to put the spotlight on these partners and the transformation they’ve achieved: Toronto Central LHIN, Toronto EMS; Mount Sinai Hospital, St. Michael’s Hospital, Toronto East General Hospital, St. Joseph’s Health Centre; Woodgreen and St. Christopher House representing the Community Support Sector; Regional Geriatric Program; Bridgepoint Health representing the Rehab and Complex Continuing Care Sector; primary care (Family Health Teams and solo doctors); social services and others.

ICCP has been remarkably successful in improving the satisfaction and comfort of clients and their family members while reducing their need for emergency medical services, hospitalizations and long-term care. The program was always seen as an incubator, a place to learn about how functional integration could work most effectively. The lessons learned are now being expanded to patients beyond the ‘1%.’

Jodeme holds Masters Degrees in both Social Work and Health Science, Health Policy, Management & Evaluation.  Her experience as a social worker influenced her conviction that the best place to start effective change was by asking the client and family caregiver what was important to them, and that was the first task in ICCP.

From the beginning, Jodeme has championed some of her guiding principles, including:

  • Encourage simple solutions while waiting to develop complex ones
  • Invest in building relationships
  • Agree to start working together differently immediately
  • Drive Change from experience
  • Empower front line staff: Inspire creativity, remove barriers
  • Share planning, decision making & accountability across the team

Based on the success of ICCP, Jodeme had the opportunity in 2012 to become Planning Lead for Health Links, an initiative of the Ontario Government based in part on the success of ICCP. In this role, Jodeme is supporting relationship building between family doctors and community care services to support doctors with their most complex and clients, and provide better support and care to these vulnerable individuals and their family caregivers.

ICCP is changing lives, and changing the health system across Ontario – and beyond.

Dianne Carmichael

Dianne Carmichael Dianne Carmichael

President & CEO,

Carmichael Worldwide Inc.

In 2004, Dianne’s father was diagnosed with cancer, affecting her profoundly. She felt overwhelmed and unprepared for the immense responsibility of becoming her Dad’s ultimate decision-maker, caregiver, champion and advocate during what became a profound journey through a complex and confusing medical system.

Dianne witnessed the gaps in healthcare first-hand and the impact they had: putting patients at a disadvantage, discouraging participatory engagement, challenges navigating the system, creating an additional burden of unnecessary anxiety in the vulnerable patient and their caregivers, poor coordination of care, lack of integrated medical records systems, poor communication, overburdened health care providers, and a system at risk of sustainability. With her dad on his deathbed, Dianne had what she describes as an epiphany which led to a major shift in her career and personal focus.

She left her role as a CEO in financial services in order to move to health care to make a difference in the lives of Canadians stricken with profound illness. Today she advocates and champions for patients, inspires others to innovate and adopt disruptive technologies in order to ensure the highest quality of care in Canada, works to influence Health Policy and lead system sustainability and transformation.

Dianne is currently a Board Member at Holland-Bloorview Kid’s Rehabilitation Hospital, Patients Canada, and is past-Chair of the Women’s Brain Health Initiative. She also sits on the Advisory Boards of CAPCH (Canadian Association of People-Centred Health), ARC (academic e-health research collaborative), York University’s Faculty of Health, Mt. Sinai’s Personalized Medicine Institute and an incubator for mobile technologies to support health care. Dianne is a Business Lecturer at McMaster University’s DeGroote School of Business.

In 2012 Dianne was appointed Founder and President of UHN Solutions on a two-year mandate to create a new centre within University Health Network (Toronto General Hospital, Toronto Western Hospital, Princess Margaret Cancer Centre and Toronto Rehab Hospitals) that would focus on innovation and commercialization. Her role at UHN Solutions allowed her to combine her passion for patient advocacy and empowerment with a belief that unique social-entrepreneurial funding models could be created to help feed Canada’s universal healthcare eco-system to help achieve sustainability – ultimately enhancing the quality of care for all Canadians.

Dianne’s mission is to mobilize organizations and Governments to rethink healthcare while leading a sustainable and consumer-centred transformation.

Guided by this dream, Dianne founded and leads Carmichael Worldwide Inc. in 2011 as CEO to provide executive leadership, innovation, commercialization strategies and consumer digital media marketing strategies. The focus is on helping dynamic healthcare, health IT and wellness organizations whose mandates include enhancing the quality of care, enhancing the patient experience, impacting system sustainability or improving care delivery through disruptive innovation, technology, communications or unique funding models.

 

As the former President of Best Doctors Canada, she is credited with making a difference in people’s lives with the change in diagnosis and treatment (22% and 61%) and the empowerment of patients  resulting in Best Doctors becoming one of the most sought after employee benefits. With Dianne’s leadership, Best Doctors Canada now makes a difference in the lives of over 5 million Canadians. In addition to her role as President, Dianne helped drive the global branding and go-to-market effort of the Best Doctors organization, which now operates in 30+ countries worldwide, as Head of Global Marketing.

Prior to her leadership roles in the healthcare industry, Dianne was Chairman and CEO of Worldsource Wealth Management (a subsidiary of Guardian Capital Group Ltd.). As an international keynote speaker and expert panelist, Dianne has spoken a number of times at The Economic Club of Canada. She writes for the Huffington Post, PolicyMatters, and Health & Lifestyle Magazine. Dianne has been interviewed extensively about healthcare, innovation, leadership and branding in print media and television, including the Globe and Mail, BNN, SunMedia TV, The Charles Adler Show and CBC.

In 2009, Dianne was recognized as one of the Top 20 Business Women in Canada, she has been nominated for Entrepreneur of the Year and was profiled as one of the Top Women To Watch in 2012.

web:  www.diannecarmichael.com

LinkedIn http://ca.linkedin.com/in/diannecarmichael

twitter @dianncarmichael

 

Nicki Kahnamoui

Nicki Kahnamoui

Photo Credit: Temmuz Arsiray

Nicki Kahnamoui

Growing research and experience demonstrate that participation and engagement in arts and cultural activities has significant benefits for the health of individuals, populations and the sustainability of health care systems.

As the Executive Director of Arts Health BC, the founding Community Partner of Arts Health Network Canada, Nicki Kahnamoui has the privilege of working on behalf of the arts & health community to promote participation and engagement in the arts for improved health, healing and wellbeing.

Over the past two decades, Nicki has been working in the health care and research field on a host of projects, ranging from new program and system implementations in hospitals to curating and organizing an arts and science exhibit in a genetics lab. She is also a mixed media visual artist, inspried by persian sufi poetry and elements in nature, whose artwork is mostly a contemplation of our continuous quest for meaning. Working in the field of arts and health is at the intersection of her two passions.  Nicki strongly believes that artistic practice and participating in cultural activities, in any shape or form, are integral to a person’s well-being. She says: “We know that engaging in arts and cultural activities is good for us. We know it because that is what the research is telling us, but most importantly we know it because we have witnessed the transformational power of the arts ourselves. So it is only natural that we want to help everyone else to tap into their own creative energies or appreciation for creativity, so that they too can participate and engage in arts and cultural activities to enhance their quality of life and good health across their lifespan.”

“The arts provide a language for sharing that cuts through the clutter, the differences, the politics, the power imbalances, and what might be considered taboo, allowing for sharing to happen at a more genuine level. What would generally be a personal experience, through the act of making art and sharing becomes public. Thoughts and issues that would have been rendered invisible or trivial start gaining recognition. It is through this act of sharing and relating that the sense of isolation and loneliness lifts, one feels heard, feels a sense of meaning and gradually a sense of community develops. This sense of connection and social engagement is paramount to individuals’ and communities’ health and wellbeing. It is also when the seeds of social change are planted.”

Arts & Health can be found in health promotion, in health care settings, recreational arts, community arts, and in arts-based health research, communication and education.  For more information check out the Arts & Health infographic created by Arts Health Network Canada.

To learn more and join the arts & health movement that is building across the country, check out:

To connect with Nicki:

Marlene Grass

Marlene Grass, NR

Founder/ Director of Clinical Services, Charles H. Best Diabetes Centre, Whitby, ON

Marlene has been involved in the world of Diabetes since the mid seventies.  In the early eighties she  initiated the first parent support group in Durham Region.  In 1989 she launched the first and only one of its kind, “The Charles H. Best Diabetes Centre” as a registered Charity to provide ongoing Type 1 diabetes education, management and support to children and youth and their families in Durham Region.  The Centre began with 20 families and today the Centre serves approximately 350 pediatric patients and their families.

The year 1998 marked the “official” launch of the adult portion of The Charles H. Best Diabetes Centre and today the Centre serves over 1300 adults with Type 1 diabetes ranging in age from 19 to mid 80 years of age.

The CDA Frederick G. Banting Award was presented to Marlene in 1990 in recognition of an individual who has developed a new and innovative program or service which has resulted in improved diabetes care.  Marlene was the first nurse to receive this award.

Most recently Marlene was awarded the 2012 Regional Outstanding Health Professional Award by the Greater Toronto Area CDA.

Miriam Kaufman

Miriam KaufmanMiriam Kaufman

Miriam Kaufman is a paediatrician and adolescent health specialist at SickKids in Toronto, Ontario.  She is the Head of the Division of Adolescent Medicine at SickKids and a Professor of Paediatrics at the University of Toronto.

All adolescent medicine specialists, whether they are nurses, doctors, social workers, psychologists, creative arts therapists, dieticians or child and youth counsellors, are interested in the patient experience and promoting self-advocacy and interventions that improve quality of life.

As an author, Miriam has written or co-written a number of books for adolescents, young adults and parents.  The patient experience is most reflected in two books—“The Ultimate Guide to Sex and Disability” (Cleis Press) which she wrote with Cory Silverberg and Fran Odette and “Easy for You to Say: Q&As for Teens Living with Chronic Illness or Disability” (Firefly Books).  The key to writing both of these was listening to her patients and others about their experiences.  Miriam has a strong belief that her knowledge and understanding should be shared and not hoarded.

As a clinician and teacher, Miriam cares for adolescents with chronic health conditions, including lupus and solid organ transplants. For the past 10 years, she has been very involved in efforts to improve the transition from paediatric to adult healthcare, founding the Good 2 Go Transition Program at SickKids and designing MyHealth Passport, an online program that allows people to create a wallet-sized card with their important information, with a mobile version coming soon.  With no advertising, thousands of people (ranging in age from parents creating them for their 2 year olds to people in their 90’s) have heard about and created these tools for self-education and information sharing on www.sickkids.ca/myhealthpassport.  Miriam is also the creator of MyLupus App, which will be available in late 2015.

Miriam believes that enhancing the patient experience involves being knowledgeable about complex conditions and resources to treat them, listening to patients and putting herself in their shoes.  Now in her 60’s, she still feels that she has lots to learn and is glad that her patients are still willing to teach her!