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UNIVERSAL HEALTH COVERAGE DAY 2017

A GLOBAL DAY OF ACTION

“From the Universal health coverage is a political goal rooted in the human right to health. But no right has ever been guaranteed until people decided to fight for it. Now is the time to rise for our right to #HealthForAll and drive courageous political action in every nation.”

UNIVERSAL HEALTH COVERAGE (UHC) DAY

“On 12 December 2012, the United Nations unanimously endorsed a historic resolution urging all countries to accelerate progress toward universal health coverage as an essential priority for international development.

UHC Day has become the annual rallying point for the growing global movement for health for all. Each year on 12.12, we raise our voices to share the stories of the millions of people still waiting for health, to call on leaders to make bigger and smarter investments in health, and to remind the world that health for all is imperative for the world we want.”

THE IMPORTANCE OF UHC FOR DAI

DAI has been in Sharjah this week at the NCD Alliance Forum, and on Day 2, talked about human rights and social justice for people living with NCD’s, including people with dementia. We will post another update on this forum soon. It is especially important for people with dementia and our families, as we still don’t get adequate support after diagnosis, and getting a dagnosis in the first place is sometimes almost impossible. Our families are left to struggle with little or no suport, and with virtually no training on how to support us. The very last straw is that far too many health care staff are very ‘under-educated’ in dementia. This needs to change, and so together, it is time to stand up, speak out, and demand action!

We all must speak up for our right to universal and affordable health coverage.

 

NCD Alliance Forum in Sharjah update 1

Today the world celebrates and acknowledges the 70th Human Rights Day, and it was fitting that as DAI’s Chair and CEO, I presented on Day 2 at the NCD (Non Communicable Diseases) Alliance Forum Workshop in Sharjah on the topic of Human Rights and Social Justice. We must all  and I was truly shocked by one of the tweets from the UN, as pictured here:

The United Nations website states the following about Human Rights Day:

“Human Rights Day is observed every year on 10 December – the day the United Nations General Assembly adopted, in 1948, the Universal Declaration of Human Rights. This year, Human Rights Day kicks off a year-long campaign to mark the upcoming 70th anniversary of the Universal Declaration of Human Rights, a milestone document that proclaimed the inalienable rights which everyone is inherently entitled to as a human being — regardless of race, colour, religion, sex, language, political or other opinion, national or social origin, property, birth or other status. It is the most translated document in the world, available in more than 500 languages.” Source: http://www.standup4humanrights.org/en/

Promoting the meaningful involvement of people living with NCD’s

Thank you to the NCD Alliance for this invitation to speak today. I’d like to start by briefly outling the global statistics on dementia, and a some background of DAI.

  • > 50 million people in the world estimated to be living with dementia (WHO, 2017)
  • These numbers are expected to triple by 2050, to152 million (WHO, 2017)
  • 1 new diagnosis globally every 3.2 seconds (WHO, 2015)
  • > 130 types or causes of dementia
  • Alzheimer’s Disease makes up 50-70% of all dementias
  • Dementia is a terminal, progressive chronic illness
  • No cure
  • No disease modifying medication
  • Some medication for AD that may slow the progression
  • Medical model of care no longer appropriate

Many of you may not have heard of Dementia Alliance International (DAI), which was established on January 1 , 2014. DAI is a global advocacy and support group, of, by and for people with dementia, and the peak body for, and global voice of people with dementia, and represents members in 44 countries. We are also  a registered 501c3 charity in the USA.

DAI is in a strategic but autonomous partnership with Alzheimer’s Disease International who also are our pnly sponsor, and DAI was completely self funded for the first 1.5 years, and still relies on some self funding for much of its work.

Eight people with dementia co-founded DAI. Some of the reasons were to ensure people with deMEntia have a voice of their own, to empower others with deMEntia to live positively with it, rather than just go home and die from dementia, to provide grass roots support through peer-to-peer support groups and other online activities, to promote self advocacy, and importantly, to lobby locally, nationally and globally for a right based approach to dementia.

The voices of people living with NCD’s

The voices of people living with NCD’s are imperative, and of course, include people with dementia. One of my personal goals is also to empower people from as many countries as possible to speak up for themselves.  In my book “What the Hell Happened to my Brain: Living beyond dementia” (2014), I talked about the value of really listening to people’s stories:

“Before writing and setting up my blog I hadn’t realised how important it might be to create a shared space where other people with dementia could talk of life, illness, dementia and other our ever-deteriorating abilities, where I could discover in the witness of others (readers, rather than critics) how my stories had been heard. The insightful writer Joel Magarey, author of Exposure felt his words had not been rendered alive until acknowledged by the reading and response of his soul mate and lover, whose compassion and timbre with him is described with such gracefulness in the book. He writes:

As I imagine myself saying the words to Penny, they seem to gain the significance I want them to have as if only when I tell her of these solitary experiences will they come to truly exist.” 

Such ‘listening’ reading requires philosophical and considerate silence allowing the author to speak to the imagination of the reader, and from the heart. It is not a substitute for more critical reading but can be a valuable source of artistic enrichment. We live until we die. For the most part, I try to live as well as possible, and to enjoy the days I am alive.”

This extract seemd important to share, in light of the young speaker yesterday who shared her own personal stories, and resonated with the NCD Alliance publication, Our Views Our Voices, as they seek to the personal stories of people living with any type of NCD.

Living with dementia has further developed my sense of social justice, and I often liken the experience of advocating for my rights (and the collective rights of all with dementia) like Rosa Parks, who refused to sit in the black section of the bus. Dr Martin Luther King Jnr. is another of my mentors, and his quote, “Our lives begin to end the day we become silent about things that matter” is one tht I regularly refer to.

Re-defining dementia

In advocating for dementia, I have seen the need to highlight various definitions, and believe we need to move away from the purely medical definition: “Dementia is a syndrome in which there is deterioration in memory, thinking, behaviour and the ability to perform everyday activities.” (Mayo Clinic, 2017).

I therefore feel we must re-define dementia, and offer three alternate examples:

  1. “We are just changing in ways the rest of you aren’t, we have increasing disabilities, the better for all of us living with dementia. We desperately need others to enable us, not further disable us!” (John Sandblom, 2013)
  2. “Dementia is a shift in the way a person experiences the world around her/him.” (Dr A Power, 2016)
  3. “People with dementia have changes in their brain that although progressive, equate to acquired cognitive disabilities.” (Kate Swaffer, 2017)

Following a diagnosis of dementia

What happened to me when I was first diagnosed, which I have termed Prescribed Disengagement®,  is not only illogical, it is a reach of human rights, and is still happening today. I was literally told to:

Go home, give up work, give up study, get my end of life affairs in order, and get acquainted with aged care.”

Dementia is the only illness I know where people are told to go home and prepare to die via aged care rather than fight for their lives!  The cost of this Prescribed Disengagement®  is a sense of hopelessness, and no sense of being able to live positively and no sense of a future. It makes it easy to assume victimhood and assume learned helplessness, and further disables and disempowers us. It definitely ensures we believe there is nothing we can do to slow the progression.

Why a rights based approach to dementia

We need a rights based approach to dementia becasue we are still applying late stage disease ‘management’ to earlier stage diagnosis, we have ignored human rights in favour of ‘consumer safety’, we have ignored human rights in favour of organisational risk management, and I believe, it’s also been convenient…

On December 10, 1948 the Universal Declaration of Human Rights was adopted by the General Assembly of the United Nations. The UN Convention was (still is) meant to protect every single member of civil society in the world… Including people diagnosed with any type of a dementia, and who have disAbilities caused by the symptoms of their dementia.

67 years later, the Organisation for Economic Co-operation and Development (OECD) report Addressing Dementia: The OECD Response concluded:

“Dementia receives the worst care in the developed world.” (2015)

This OECD report also confirmed why it was necessary to demand a human rights based approach to dementia at the WHO in 2015, which includes full access to the CRPD and rehabilitation. Globally, we are lobbying to phase out all institutional care, and also secure dementia units. Locked facilities or wards simply equate to  segregation, based on an illness, and the only other people we lock up ‘for their or our safety’ are convicted criminals. I also believe:

“There is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.” (Kate Swaffer © 2014)

Finally, and very importantly, we know that most of the NCD’s are also major risk factors for dementia, and as one of DAI’s slogans says, ‘Together, we are stronger’.

Thank you.

Spirituality and Dementia

Culturally, it is easier to understand someone in Africa or Nigeria believing a person with dementia has been taken over by evil spirits. What is not acceptable, particularly in a developed country, was to discover recently that some  Christian Leaders are blaming people with dementia for having the disease, telling them they must be sinners.

Unfortunately, DAI has had many members who have had this experience recently, from countries including the USA, UK and Australia. And whilst not all of our members have any kind of Christian or other Faith or Spiritual beliefs, it is definitely not kind, or true, to tell someone they have dementia because they are sinners.

Thankfully, we also know many Churches are actively working towards welcoming people with dementia, and many are even working towards becoming dementia friendly, which is wonderful, but those who blame us for having dementia becasue ‘we are sinners’ need a lot more than education or awareness…

As a way to support our members, DAI decided to the best solution was to host an online non-denominational Inclusive Christmas Worship Service next week.

It is being held for our DAI members (or indeed, anyone with dementia), and their family and friends. Members will have today received details on how to join via email. We hope this will be the first of many, and are thrilled Jim Spiker from Adelaide has agreed no only to get up early to lead it, but was willing to learn about Zoom!

Jim has been involved in Chaplaincy ministry since 1976. He has worked in schools, industry and workplaces, and for the last 17 years, as an Aged Care Chaplain in South Australia. His theological training was with Churches of Christ and he was involved in part-time parish work alongside his chaplaincy work on several occasions. Jim enjoys reading across a broad range of subjects from Terry Pratchett to Neuroscience and a fair smattering of theology and philosophy. He is keen on environmental work and is an active bird-bander in a local conservation park. Jim and his wife Anne love keeping up with their children and grandchildren and often rely on Facebook to read what they are all doing. The current excitement is getting ready for a dachshund puppy to arrive as his 70th birthday present.

One of my friends, also a DAI member and a long time campaigner Ken Casper from Durham in the UK, has written about spirituality on his blog called How feelings change in dementia. It is an interesting read, and I’ve had many discussions with others either gaining faith, or losing their faith after being diagnosed with dementia. It would be a reallyinteresting topic to study further, if I wasn’t already so busy!

We look forward to seeing our members and their partners, families and friends online other next week or the one after (or both!) at our end of year (non denominational worship service, and our non religious) festive season celebrations. If you are a person with dementia, but not a member of DAI, you and your family ad friends are still welcome to join us by emailing us at [email protected]

Best wishes for a joyous festive season, one and all.

Kate Swaffer
Chair, CEO & Co-founder
Dementia Alliance International

Dementia: the impact on families

This week, we are publishing an article written by one of our USA members, Davida Sassler, who shares her experiences of Lewy Body Dementia and the imapct it has had on her own life and family. It is a courageous blog, and highlights the myths and stigma so many of us still experience when diangsed, especially from our own family and friends. Not only does the health care sector need better education, the community needs it too, and much more than awareness raising through the use of the discourse of tragedy and suffering, as that keeps too many of the myths alive.

People with dementia can, and are living positively with it. This is happening all aropund the world, and we are individually and collectively trying to get rid of the myths and fear of dementia. All we ask is that you see the person, not the dementia, and help us to live in spite of dementia by supporting us to maintain independent lives with disability and other support.

In fact, we simply ask our families and friends to open their hearts, and offer us the same love and support they would if we had been diagnosed with cancer instead of dementia.

Grandchildren and Dementia

By Davida Sassler © 2017

When I was diagnosed first with Alzheimer’s last December and later updated with Lewy Body Dementia diagnosis, I never imagined at 51 years old in the early stage that anyone would consider me a threat to my two grandchildren – Isaac 3 years old and Hannah 2 years old. Yes, I hallucinate and can be forgetful especially if not on my medication, but I never considered myself a threat.

Over the last year my son and his wife had separated due to her wishing to be with another man, it has been difficult on my son and grandchildren. Currently, my former daughter in law has decided that she wants sole custody of the children and has literally thrown me under the bus on her pursuit of taking the children away from their father. I along with my partially blind ex-husband are claimed to be dangerous and unfit to be around the grandchildren.

My son has spoken with his lawyer and our best recourse of action is to submit a letter from our doctors stating otherwise for the judge. I have spoken with my neurologist’s office and he has no problem supporting me. He feels that there is no reason for the children to be withheld from me.

This recent issue has made me consider growing up as a great grandchild, grandchild and as an adult a daughter of someone with Dementia. My great grandfather Ivo had Parkinson’s disease and later developed Dementia. As a child, I did not understand why my great grandfather would go from normal to completely confused or even angry at times which was not the man that I grew up around. He was never threatening to me or anyone else, he just seemed confused and frustrated.

Later as an adult, I had to deal with my grandmother Katheran who was Ivo’s daughter who had Alzheimer’s. She did her best to hide it from everyone. Most times, she didn’t speak just nod yes and smile. Eventually, she was misplacing everything and was wondering the neighborhood at 3 AM in the morning knocking on the neighbor’s doors. This convinced us that she was in serious trouble. At no time, did I ever prevent her from seeing my children. It took some explaining to them even in their teen years as to why she was acting so strangely.

Eventually, my father started having issues with confusion and hallucinations. At first his doctors claimed Alzheimer’s but he absolutely would not accept their diagnosis. He called them quacks and refused all medication. He knew his symptoms did not match what he was experiencing and blamed it on his dyslexia as he aged. As he continued, things only became worse. He was angry on a regular basis and soon forgot words. At moderate to late stage, my stepmom was able to finally get him on medication and to other doctors who diagnosed him with Lewy Body Dementia.

My father had always been a very strong man with an outspoken demeanor. It was difficult on my children to see him become childlike and unable to hold a simple conversation. At this point, both my kids were adults and my grandson Isaac had been born. Never did any of us consider keeping Isaac away from my dad because we knew on some level that he understood this was his great grandchild.

Dementia is a lonely place. I could see it in my family member’s faces and now I am experiencing it firsthand. I would never wish this on my worst enemy. People want to shun folks with dementia. I saw how they reacted when we would take my dad out to dinner at a restaurant. Everyone seemed uncomfortable around him and his simple ways. I guess it is easier to send someone away and out of sight than to acknowledge that they are suffering dementia.

Remembering how my family members were treated, made it difficult for me to admit to anyone outside of my family that I had Dementia. I did not want to be treated different. I still feel like me most days. The days that I am confused treating me differently only makes me angrier. I was literally fuming over the litigation papers trying to bar me from my grandchildren. No, I don’t know how long that I can remain in the early stage but I intend to fight to remain here as long as possible. During this time, I want my life to be as normal as I can be. I want to be around other people, friends, and family but do not want to be treated as a child or like I am made of glass.

A 100 years ago, crazy people were left in attics or sent to asylums to be hidden away because everyone was so ashamed to be around them. Now they openly shop at Walmart and pose as Walmartians. I even recently saw a video taken of a young woman with two different shoes (a flat and a high heel) dragging a raw roasting chicken along on a leash to the bus. Crazy is now celebrated and paraded about fully in society.

Unfortunately, society does not have the same tolerance for Dementia patients. If you are early stage, most folks don’t believe that you are sick and if you are far enough along to doubt the dementia, they prefer that you aren’t around them. They are no better than public lepers. All we can do is fight to dispel the myths of dementia. Educate the ones who refuse to see this as a disease like any other including Cancer. We are no different just a different type of disease except unlike Cancer, we have no current hope of a cure. It is a disease that was considered only for the old and infirmed not people like me who are still relatively young at 51 years old.

We must speak out and we must fight for our rights as long as we can.

Thank you Davida for sharing your story.

SUSAN SUCHAN WINS 2017 RICHARD TAYLOR MEMORIAL ADVOCATES AWARD

Today on World Alzheimer’s Day 2017 we announce Susan Suchan as the recipient of the prestigious DAI Richard Taylor Memorial Advocates Award. Congratulations Susan.

From Oklahoma in the U.S.A, Susan Suchan is a loyal, fun loving and tireless DAI member and has been a very active member of many other advocacy and support groups around the world. She has ensured through her own actions and dedication to all people with dementia, which not only speaks to us in the same way Richard’s incredible legacy lives on, but also her own very impressive and gracious personal and advocacy legacy lives on.

Congratulations and thank you Susan, for being the generous, loving and truly inspirational woman that you are, and special thanks to your family for their support of you and your work (and therefore the work of all advocates).

 

Watch Susan finding out she is the recipient of the award for 2017 in an introduction by DAI Chair, and a conversation with DAI board member, Brian Le Blanc:

Susan thoroughly deserves the 2017 Richard Taylor Memorial Award for her service to DAI, and although Richard was one of eight DAI co-founders, she have devoted herself tirelessly to carrying on the work and advocacy for all people with dementia, in spite of her changing health. Susan is a role model to the millions of people already diagnosed with dementia, and one that most of all, we are all honored to call a friend.

DAI is very proud of Susan, and thanks her for her tireless work, patience, humour and support of our members. She are extremely deserving of the 2017 Richard Taylor Memorial Advocates Award. Congratulations from us all.

Here are some quotes from DAI members on why Susan deserves this award, as told to us by either by those who nominated her, or those who know her well and have seen her shining example of advocacy:

“Susan is a beautiful lady with a grateful heart, and represents dementia positively rather than as a “death sentence”. She sees it as a new journey worth every bit of fighting to live and to use her strengths, rather than focus on what she can no longer do. She struggles daily without giving up, or into others claims. Like Richard Taylor, she is not afraid to tell it as it is. Richard always said ‘stand up and speak out’, and Susan continues to do that, with grace and love. She is grateful for anyone’s help, recommendations and actions, and always speaks and acts with love.”

“Susan Suchan is a role model to all people with dementia, she herself living with a form of dementia that includes Primary Progressive Aphasia, which has impacted her ability to communicate easily. In spite of this, she continues to speak out tirelessly, and has worked with a documentary team to tell her story, to ensure her legacy also lives on. Her quest to improve the world for others also diagnosed with dementia is remarkable, and is aligned with the values the late Richard Taylor, and also inspires so many DAI members.”

“In spite of the very real negatives of dementia, Susan has chosen to see the experience as a gift and an opportunity. Susan has chosen to accept it with grace, and through your wisdom and love, has given herself to the world, working for others, and with an acceptance of dementia and all it brings. Because of dementia, we have all had a chance to meet one of the true heroes of dementia.”

Susan Suchan is my vicarious living brilliantly beyond dementia advocate example – A ‘CAN DO’ focus in a failing body but a victorious inclusive spirit, exudes hope, joy and fight for those doing it OK and those for who it is tough – touched by dementia with all its tentacles of influence worldwide. Always looking outward, upward and around to include everyone. A true champion and worthy recipient of the Richard Taylor Memorial Advocates Award.”

Dear Susan, We may not have met in the flesh, but we are kindred spirits. Devoting our lives, to help those who will follow in our footsteps. I have read some of the wonderful things you have done, and I am lost for words in admiration. If ever there was, a worthy recipient of this prestigious award, then it is you. Keep up the good work.” 

“CONGRATULATIONS sweet Susan! You SO deserve this award, we are all SO proud of you . You were one of the first people I met in person 6weeks after my diagnosis of FTD. I will never ever forget your kindness, friendship, laughter & support . You were & still are like a beacon of hope to all of us living with dementia . YOU are truly an inspiration to many & loved by so many . Thank you also to your precious family who have supported & allowed us to ” share ” you! You Rock xxxxx” 

You can tune into her documentary updates here… 

World Alzheimer’s Month 2017

As most people who follow this blog will know it is now World Alzheimer’s Month 2017 #WAM2017. Each September we make our efforts more focused than usual on raising awareness and supporting people with dementia and their families, and many organisations are hosting activities that you can get involved with.

Many of DAI’s members would prefer it was called World Dementia Month, as for those who do not have Alzheimer’s Disease, it can feel exclusive rather than inclusive of everyone with a diagnosis of dementia.

World Alzheimer’s Month was launched by ADI in September 2012. The decision to introduce the full month, to contain the existing World Alzheimer’s Day which is September 21, was made to enable national and local Alzheimer associations worldwide to extend the reach of their awareness programmes over a longer period of time.

For the last three years, DAI published a blog for every day of the month, but decided not to this year, as some people felt overwhelmd from receiving too many emails. Instead we are more focused behind the scenes on working towards intiatives that will last longer than a month, including human rights activities and fundraising so that we can continue to do our work.

Currently, our work is at the global, national and grass roots level, and where possible, and we aim to support local groups of people with dementia and their families who are workign in their local communities. At the grass roots level, our online peer-to-oeer support groups, cafes and “A Meeting Of The Minds” Webinars continue to be well attended.

As mentioned in last weeks blog, we are co-hosting our first live event which is also being run as an online Webinar.  Register here for “Voices of Dementia”. We only have a few spaces left if you wish to attend in person.

UN Special Rapporteur: The Right to Health


Earlier this year the UN Special Rapporteur on the Right to Health, Mr. Dainius Pūras, from Lithuania presented his visionary report on mental health to countries at the Human Rights Council (report available in several languages here). We congratulate them on this very important work.

The report provides an important framework and road map for mental health that responds to people’s needs, respects their rights and ensures that the dignity of every person is respected.

Dementia is listed under mental health at the WHO, but it is pleasing to note that due to the advocacy of DAI and Autism International at the Mental Health GAP forum last year, dementia is now formally recognised there as a condition causing those of us digosed with it as having cognitive disabilities, rather than it being a mental illness, intellectual disability or psychosocial disability.

In the Introduction of this report, it states:

1. Mental health and emotional well-being are priority areas of focus for the Special Rapporteur (see A/HRC/29/33). In each thematic report, he has attempted to bring mental health into focus as a human rights and development priority in the context of early childhood development (see A/70/213), adolescence (see A/HRC/32/32) and the Sustainable Development Goals (see A/71/304).

2. In the present report, the Special Rapporteur expands on this issue and provides a basic introduction to some of the core challenges and opportunities for advancing the realization of the right to mental health of everyone. In the light of the scope and complexity of the issue and of the evolving human rights framework and evidence base, in his report the Special Rapporteur seeks to make a contribution to the important discussions under way as mental health emerges from the shadows as a global health priority.

3. The present report is the result of extensive consultations among a wide range of stakeholders, including representatives of the disability community, users and former users of mental health services, civil society representatives, mental health practitioners, including representatives of the psychiatric community and the World Health Organization (WHO), academic experts, members of United Nations human rights mechanisms and representatives of Member States

The World Health Organization is committed to responding to the report’s call for Member States to seek technical assistance from the WHO QualityRights initiative in order to promote access to good quality mental health and related services and respect for the rights of persons with psychosocial, intellectual and cognitive disabilities.

Human Rights Consultant for DAI and ADI, Professor Peter Mittler and DAI Chair and CEO Kate Swaffer have been actively involved in the WHO QualityRights work, and DAI continues to seek your feedback.

If any DAI members wish to become part of a small working group to provide feedback on this project, or need more information, please email us as soon as possible please.

World Dementia Council Global Care Statement

Following the adoption of the WHO Global Action Plan on the Public Health response to Dementia in May, it is pertinent to give our members an update on some of the work of the World Dementia Council. As Chair of DAI, I am a full member, and as the work of the world Dementia Council evolves, we will have more to report. For now, I’d like to highlight a small piece of work done by the Care Global Team of which I am also a member of.

Announced by the WDC on May 25, 2017;  

The Global Care Statement sets out two Calls to Action, which are designed to help ensure these rights. These call for all of the world’s governments and governing bodies to adopt, implement, and ensure high-quality, person-centered care and support for people living with dementia; and for all health and social care systems to fund and provide access to high-quality, person-centered dementia care and support services.

It also includes eight important Principles of High Quality Care and Support, including for individuals to receive a timely and accurate dementia diagnosis; for people living with dementia to be treated with dignity and respect; for communities to be inclusive of people living with dementia and encourage their engagement in the community; for dementia care to be person- and relationship-centered and based upon continuous assessment and individualised planning; and for people living with dementia and their care partners to be active participants in care planning and decision making.

The principles also express the need for medical and care professionals to be knowledgeable of all aspects of dementia and to work across disciplines to ensure a holistic approach to disease management; and for care coordination and collaboration to occur between all care providers, including in monitoring and evaluating the care and support provided.

You can download the full Care statement here.

There are many academics and professionals publishing articles and writing books on improvng care,  in the acute, residential and community care, and I’d recommend looking up books by Dr Shibley Rahman and Dr Al Power.  Many people with dementia have also published books, and are full of anthropologcal evidence of their experiences, and what they want in their care.  If you purchase through Amazon, you can donate to DAI via Amazon Smile.

Have a great day!

Kate Swaffer, Chair, CEO & one of eight co founders of DAI

 

DAI’s Peer-to-peer support groups

DAI’s peer-to-peer support groups continue to grow and evolve, and following the departure of our global manager earlier this year, we have found that setting up each group with a number of co hosts to manage their own groups to be very effective. It also takes the pressure off of expecting one person to do it, which in hindsight was too much work for one person, but it also reduces the risk of the groups ‘falling over’ if that person gets sick or resigns.

These groups are truly empowering and supportive and our updated flyer about them can be downloaded here to share: DAI Global Peer-to-Peer Support Groups_2017

If you are a member of DAI and have not joined one yet, or haven’t been for a while, we hope to see you soon. You can email us at [email protected] to join. Last week, this is what I wrote after attending one of our USA peer-to-peer support groups:

“Just finished attending our weekly Richard Taylor support group… we’ve been laughing a lot (and almost crying a couple of times) for over 90 minutes. Discussions on grief and loss that we go through, ‘threesomes’ and the Three Stooges, the recent FTD conference and many other interesting things. Congrats to Jerry Wylie for setting up a local support group in his home town too, we were all truly inspired, and I get the feeling we will all help each other to do the same. We even introduced a young genius (the son of a member) to an older one, our long time friend and DAI support group member Phil… which was amazing.”

This week, our Monday Aussie group shared a video of a young girl who can not only sing, but who plays the piano with her toes as she has no arms; you can watch the video of it at the end of this blog. If any of us felt miserable about having dementia, this certainly motivated us to ditch PLOM (Poor Little Old Me) disease at least for a few moments! We also had a support group member play his guitar and sing his own song written about dementia and stigma, and we laughed and cried, as we shared and supported each other.

Our UK group this week had a new member as well, who was truly amazed how we connect from all around the world, and is going back to advocate that his national organisation get onto zoom so that remote members can participate fully in their national advocacy work! It is always wonderful to see our members empowered to become more active and to live positively in spite of dementia.

Long live Dementia Alliance International.

Frankly, this is the only truly helpful support I have ever received.

Now, what we also need to do it to make sure our care partners, and if we have younger onset dementia, our parents and sons also are provided with the same level of support. Unfortunately, just like people diagnosed with dementia setting up DAI, they may have to do it for themselves…

Finally, the members of DAI are very sorry to hear of Mick and Sue Carmody’s recent very serious health issues, and wish them a speedy recovery, or at least that their health stabilises soon. Our thoughts and love are with them, and their family at this time.

Girl With No Arms Sings & Plays Piano With Her Feet | Romania’s Got Talent | Got Talent Global

Have a great week,

Kate Swaffer, Co-founder, Chair & CEO, Dementia Alliance International

IT’S OUR CONVENTION: USE IT OR LOSE IT? by Peter Mittler

The article below was written by Professor Peter Mittler as a Guest Editorial for the Disability, CBR and Inclusive Development journal,  published in 2012 for people to promote Community Based Rehabilitation (CBR) for all people with disabilities in Low and Middle Income countries.

However, it is now very relevant for the same reason for people with dementia in all five continents. Peter is an Emeritus Professor of Special Needs Education, University of Manchester, UK, and a former President of Inclusion International and UN Consultant on disability and education. He is also a DAI member and the current Human Rights Consultant for both DAI and ADI. Thank you Peter for suggesting we share it here. It has taken a few days, as copying from a PDF means many letters are missing from words, so time has been needed for editorial accuracy. If I’ve missed any, please let us know [KS]!

Abstract

Unless action is taken now, at national and local levels, to ensure that the world’s one billion people with disabilities derive real and lasting benefits, the United Nations Convention on the Rights of Persons with Disabilities is in danger of being consigned to the graveyard of missed opportunities. Although many governments have signed and ratified the Convention, evidence of actual implementation is an immediate priority, especially in the midst of a global recession.

The scene is now set for governments to bring their policies into line with the principles and Articles of the Convention and to provide regular reports to the Disabled Persons’ Commi ee of the United Nations High Commission on Human Rights. Use of the internet can ensure that accountability is made public and includes the full participation of people with disabilities.

INTRODUCTION

“If the demands of justice have to give priority to the removal of manifest injustice (as I have been arguing throughout this work) rather than concentrating on the long-distance search for the perfectly just society, then the prevention and alleviation of disability cannot but be fairly central in the enterprise of advancing justice” (Amartya Sen, The Idea of Justice, 2009, p. 259).

“The Convention on the Rights of Persons with Disabilities is only as good as its implementation. And even though countries are competing with each other in a race to ratification, its implementation thus far is abysmally poor” (Javed Abidi, Chairperson, Disabled Peoples’ International, 2011).

“We are the leaders of today. We have broken the status quo. And within the next five to ten years you will see persons with disabilities being leaders, being ministers, and ultimately holding the position of president in our countries” (Seray Bangura, Sierra Leone Young Voices, 2012).

Unless immediate action is taken at national and local levels to ensure that the world’s one billion people with disabilities derive real and lasting benefits, the United Nations Convention on the Rights of Persons with Disabilities is in danger of being consigned to the graveyard of missed opportunities.

The passing of the CRPD into international law in 2008 marks the culmination of decades of struggle by people with disabilities to ensure that their basic human rights as citizens are respected and the barriers to their participation in society are removed. The UN has set the scene and is doing what it can to persuade its member states to translate its principles into practice. However, Disabled Persons’ Organisations and their supporters in civil society must now put pressure on national governments to implement the Convention. The fact that the Convention has coincided with a global economic recession creates a new urgency to turn rights into realities.

THE IMPORTANCE OF THIS CONVENTION

The struggle for disability rights began as part of the wider civil rights movements of the 1960s. In 1980 it ‘went global’ at the now historic Rehabilitation International Conference in Winnipeg, when people with disabilities decided to form their own association which became Disabled Peoples’ International a year later (Driedger, 1989). DPI received strong support from the United Nations which had just launched its International Year of Disabled Persons. Since then, DPI, working with other international disability organisations, has played a leading role in shaping UN policy, starting with the World Programme of Action for Disabled Persons, the Regional Decades and the Standard Rules on the Equalisation of Opportunities for Disabled Persons. The Rules were influential, but lacked the force of law and international accountability now provided by the Convention.

The Convention does not aim to create new rights for people with disabilities but validates their full and equal access to the Universal Declaration of Human Rights promulgated in 1948. It was necessary in the light of overwhelming evidence of their exclusion from these rights, in all countries of the world. This exclusion will continue unless action is taken to implement the Convention.

The Convention was the first to include members of Disabled Persons’Organisations (DPOs) as full and equal participants at every stage of its development, together with politicians, professionals and officials. Their participation is relected in the adoption and application of the social model of disability which highlights the wide range of obstacles confronting the rights of people with disabilities, and ways in which these can be overcome. The international disability NGOs continue to work together as members of the International Disability Alliance, which is actively promoting the implementation of the Convention and has produced detailed guidelines for monitoring and advocacy (IDA, 2010).

The United Nations and the wider international community now recognise disability as one of the major inequalities faced by people in all societies, along with inequalities related to poverty, gender and membership of a minority group. Consequently, the Convention now places an obligation on all United Nations agencies and organisations to ensure that people with disabilities are included in all policies and development programmes, and particularly in the eight Millennium Development Goals in which their needs were not explicitly identified or included in monitoring criteria. Since one-third of the 77 million children still excluded from school are children with disabilities, it is self-evident that the goal of universal free primary education for all by 2015 cannot be a attained if their rights continue to be overlooked.

The United Nations Development Group (2011), which coordinates the work of 25 UN agencies at regional and country team levels, has issued detailed guidelines on strategies and mechanisms to ensure that people with disabilities are included in the whole range of UN-sponsored aid and development programmes from which they have previously been excluded. This document encourages UN country teams to work closely with Disabled Persons’ Organisations. In addition, the UN is also working to ensure that people with disabilities are not overlooked in emergencies and humanitarian disasters, and has published a CRPD advocacy tool kit with particular reference to ensuring support to survivors with disabilities caused by landmines and cluster bombs (United Nations, 2008). The rights of people with disabilities also have to be taken into account by government reports on all other UN Conventions, sent to the O ce of the High Commissioner on Human Rights – for example, those concerning women, children, torture, racial discrimination and civil and political rights (OHCHR, 2010).

The 2013 UNICEF State of the World’s Children report (UNICEF, in press) will focus on children with disabilities and provide up-to-date information and examples of progress in all countries. This follows earlier reports, including Promoting the Human Rights of Children with Disabilities (UNICEF, 2007) and a child-friendly version of the Convention (UNICEF, 2008).

A comprehensive World Report on Disability has been published by the World Health Organisation and the World Bank (2011). The report takes the principles and priorities of the Convention as its starting point and provides a wealth of information with special reference to low and middle income countries. Consistent with the social model of disability and the International Classification of Functioning, Disability and Health (WHO, 2001), it emphasises environmental factors in creating disability, identifies obstacles to the expression of rights and to the development of services, and provides many examples of ways in which these obstacles are being removed or at least confronted by countries at all stages of development. It has been followed by an equally informative world report on dementia (WHO and Alzheimer’s Disease International, 2012), again with particular emphasis on the health implications of an ageing population for middle and low income countries.

CONVENTION PRINCIPLES

The Convention is based on a number of fundamental principles which can be used for purposes of monitoring or accountability: These include:

  • Respect for inherent dignity, individual autonomy, including the freedom to make one’s own choices, and independence of persons
  • Non-discrimination
  • Full and active participation and inclusion in society
  • Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity
  • Equality of opportunity
  • Accessibility
  • Equality between men and women
  • Respect for the evolving capacities of children with disabilities and respect for the rights of children to preserve their identities.

MAIN ARTICLES OF THE CONVENTION

The core articles of the Convention address substantive issues of importance for people with disabilities of all ages. Each focuses on speci c domains in which barriers to participation are experienced by people with disabilities, and lays down broad principles and policies for their removal. These include:

Women; children; awareness raising; accessibility; right to life; situations of risk and human emergency; equal recognition before the law; access to justice, liberty and security of the person; freedom from torture, cruel, inhuman or degrading treatment and from exploitation, violence and abuse; protection of the integrity of the person; liberty of movement and nationality; living independently and being included in the community; personal mobility; freedom of expression and opinion and access to information; respect for privacy and home and family; education; health; habilitation and rehabilitation; work and employment; adequate standards of living and social protection; participation in social, political and cultural life, recreation, leisure and sport.

HOLDING GOVERNMENTS ACCOUNTABLE

The scene is now set for national governments to be accountable to their own citizens, and for people with disabilities to insist on their right to participate in the process of national implementation.

Since its adoption by the UN General Assembly in 2006, 153 countries have expressed their broad agreement with the principles of the Convention by signing it. The 113* countries that have since proceeded to ratify it now need to be commi ed to a time-tabled plan of action to implement each Article of the Convention. Countries that have neither signed nor rati ed it should be held to account and pressed to do so. Up-to-date information on the status of all countries in relation to the CRPD can be found on the UN and IDA websites.

Ratifying States accept a number of general obligations to:

  • modify or repeal laws, customs or practices that discriminate directly or indirectly against people with disabilities
  • include disability in all relevant policies (mainstreaming)
  • refrain from any practice inconsistent with the CRPD
  • consult with people with disabilities and their organisations in implementing the CRPD.Consistent with the social model of disability the Convention, as well as many existing examples of national legislation, also imposes obligations on both public and private authorities to make “reasonable accommodations” to all relevant aspects of the environment so as to enable people with disabilities to exercise their rights. Guidance documents have provided examples of accommodations that might be considered reasonable and unreasonable (OHCHR, 2007).

MONITORING

Since Conventions incorporate international law, the UN provides a comprehensive framework for monitoring and accountability. Accessibility of the internet ensures that this process can take place in the public domain, rather than in closed committees or official reports. Monitoring tools are increasingly available in accessible language (Inclusion International, 2008; Equalities and Human Rights Commission, 2010; World Blind Union, 2012). Both the High Commission (OHCHR, 2010) and the International Disability Alliance (2010) have published helpful guidelines on the preparation of civil society submissions, stressing that they need to refer to the specific principles and Articles of the Convention in framing their comments.

All ratifying states have to submit regular reports on their progress to the new Disabled Persons’ Committee of the UN Office of the High Commissioner for Human Rights which has overall monitoring responsibility for all UN Conventions. In addition to reports submi ed by governments, the committee is open to submissions by non-governmental and civil society organisations. These are published on the internet, together with the Committee’s own report and recommendations on the degree to which the Member State is compliant with the Convention. Since the Committee’s recommendations are not legally binding, it is important for national organisations of persons with disabilities to use and publicise the Committee’s findings in their advocacy campaigns.

A press release and full report of the Committee’s conclusions and recommendations relating to individual countries can be found on the OHCHR website. The Committee has already published its findings on Peru and Spain and will consider reports from Argentina, Hungary and China (with Hong Kong and Macau) in September 2012. Some sessions can be watched live or viewed via the IDA website, which also includes a link to the Hungarian national disability consortium’s response to the policy of their government.

In the case of Peru, the Committee commended the government for its dra bill on the rights of persons with disabilities, the adoption of a law on sign language and an increase in funding for programmes for persons with disabilities, but expressed strong criticisms concerning forced sterilization as a method of contraception and the fact that 81 % of people with disabilities had no rehabilitation services and only 1.42 % were covered by social security programmes. The Committee also expressed its concern about the forcible use of medication and the poor conditions in psychiatric institutions where some persons had been institutionalised for more than ten years without appropriate rehabilitation services.

The report on Spain commended the adoption of a new long-term strategy (from 2012 to 2020) including objectives over the short and medium term, and welcomed the high percentage (78.35%) of enrolment of children with disabilities in the mainstream education system. Recommendations included measures to ensure the active participation of persons with disabilities in public decision-making processes, including the right to vote at the regional level and the inclusion of children with disabilities at all levels, and a more comprehensive consideration of women and girls with disabilities in public programmes and policies, in order to promote their autonomy and full participation in society and to combat violence against them.

The Commttee has a backlog of reports from Austria, Azerba an, Bahrain, Belgium, Brazil, Bulgaria, Cook Islands, Costa Rica, Croatia, Czech Republic, Dominican Republic, Ecuador, El Salvador, Finland, Germany, India, Indonesia, Mexico, Mongolia, Morocco, Netherlands, Paraguay, Philippines, Poland, Republic of Korea, South Africa, Sweden, Turkmenistan and the United Kingdom. All these reports will be on the OHCHR website and should also be in the public domain at national level. Therefore, there is still time for NGOs in all these countries to make independent representations to the Commi ee.

Optional Protocol

The Optional Protocol, which has so far been rati ed by 65 States, enables individuals or groups of individuals who believe that their rights are being violated to submit a complaint to the Disabled Persons’ Commi ee. In addition, it gives the Commi ee the authority to examine grave or systematic violations of rights under the CRPD. DPOs can use both of these procedures to report on violations of rights under the CRPD (OHCHR, 2010; International Disability Alliance, 2010).

The Committee has received its first complaint from an individual under the Optional Protocol, and supported her objection to a Swedish municipality’s refusal of permission to extend her property for installing a hydrotherapy pool, considered essential to her treatment and rehabilitation programme (CRPD/ C/7/D/3/2011).

AN AGENDA FOR CHANGE

Over the last 50 years there have been many recommendations to implement sustainable policies, designed to support people with disabilities to take their rightful place in society. Although significant progress has been made in many parts of the world, including some of the poorest countries, there is still abundant evidence of people with disabilities being ignored and marginalised everywhere. The Convention therefore provides a unique opportunity for every country to do a rethink about the quality of life of its citizens with disabilities, and to make a fresh start in xing its priorities. This is not only a task for all governments, but also a challenging opportunity for citizens.

Since the 1981 International Year of Disabled Persons, the UN and NGOs have highlighted a number of priority areas which have proved e ective in countries at varying stages of development.

1. Develop a National Disability Strategy

Governments should be urged to create a high-level focal point for disability, responsible directly to the Head of State or Prime Minister, who should publicise their full commitment to promote the rights of all citizens with disabilities and to combat discrimination at every level. These are already working well in some countries, including the Philippines, Japan, Turkey and South Africa.

This group should be entrusted with the development of a Convention Implementation Programme as one element of an overall national disability strategy, with clear targets, time-frames and mechanisms for monitoring and accountability at local levels.

The group must include a representative consortium of national DPOs. These must be granted time and resources to meet in accessible environments before and between meetings, in order to develop a common strategy. It goes without saying that all documents and proceedings have to be accessible to all participants.

In addition to high-level representation from ministries with existing responsibilities, such as health, education, employment and social welfare, other ministries such as nance, housing, transport and justice will also need to commit to a comprehensive national strategy.

Information about the work of this coordinating commi ee should be reported to Parliament and to regional and local bodies, and be freely available on the internet, preferably in an interactive form so that members of the public can express their views.

2. Support People with Disabilities and their Organisations

At the heart of the Convention lies the participation of people with disabilities in the process of reform. This involves much more than inviting them to join commi ees. It calls for support and strengthening of DPOs, and the creation of a climate of debate and discussion of a kind which brought the UN Convention into being in the rst place.

3. Promote Access to Mainstream Services

Each public and private agency needs to conduct an audit of its buildings, facilities and procedures with a view to removing barriers to participation. This can be done with the help of DPOs with experience of access audits based on the needs of people with a wide range of physical, mobility, sensory, cognitive and mental health impairments. These are already active in many places like Malaysia (WHO and World Bank, 2011, p. 176) but could be replicated more widely given the opportunity. Governments should also support the development of access standards for all services and amenities available to the general public, including vocational and professional training.

Incentives for Universal Design should be put in place, whereby provisions for access are incorporated into the original speci cations for pavements, buildings, transport and other amenities. Most personal computers already include basic access so ware, but people with disabilities should be able to receive additional so ware needs free of charge.

4. Improve Services for People with Disabilities

Global surveys such as those carried out by WHO (2007, 2011) make it clear that no country can be satis ed with the quantity or quality of the supports and services provided for its citizens with disabilities.

While access to mainstream services is fundamental, many people with disabilities will always need supports and services to use them. These include not only low vision, hearing and mobility aids, but also personal support for people with intellectual and mental health impairments, to help them become more independent as well as contributing members of their community.

5. Develop Appropriate Quality Assurance Processes

There have been reports of poor quality services, inhumane treatment and abuse of people with disabilities even in countries with highly developed provisions. This is despite elaborate quality assurance mechanisms and inspections by organisations funded by government or professional bodies.

Quality assurance is essential but a balance has to be struck between procedures and guidelines agreed between service providers and their clients on the one hand, and national standards imposed from the centre on the other. Accountability must be to individual service users who have to be at the centre of decision-making, and must be supported if they wish to make a complaint. Organisations of people with disabilities are increasingly involved in quality assurance and accreditation processes, but should be more fully supported in evaluation of services and supports.

Two very different but complementary approaches to quality assurance have just been published. A new WHO Qualityrights Toolkit (WHO, 2012) provides detailed guidelines for the assessment of a range of mental health and social care facilities in all countries, by NGOs and human rights organisations as well as accreditation agencies and government bodies. Assessments are carried out under ve broad thematic headings, each based on relevant articles of the CRPD. For example, theme 5 focuses on Article 19 which deals with four components of ‘the right to live independently and be included in the community’.

In contrast to evaluations which focus on services and sta , Verdugo and his colleagues (2012) have come out with a proposal to assess the impact of the Convention by asking those whom it is intended to bene t about their Quality of Life (QoL), drawing on three decades of international research in which QoL measures have been developed with populations of persons with disabilities, the elderly and the disadvantaged. Their paper demonstrates that the eight domains identi ed by QoL research can be both conceptually and operationally related to speci c Articles of the Convention (Verdugo et al, 2012).

6. Develop a National Training Strategy

Since many staff lack appropriate quali cations, the training and retraining of sta at all levels can be seen as an investment in human rights.

A national and regional state development and support strategy has been shown to be an indispensable component of reform. Priority should be given to locally-based sta who are in daily contact with persons with disabilities and their families. Education, health and community workers may need support in extending their skills to these people, or may be prevented from doing so by discriminatory practices or a itudes. They in turn need support from more experienced itinerant multi-disciplinary teams who themselves need access to refresher courses to update their knowledge and skills and to provide leadership in changing outdated attitudes and practices. National or regional centres for advanced study, research, training and dissemination are also needed.

People with disabilities can make a major contribution towards training, but to do this systematically they need to be paid, supported and treated as experts in the same way as other contributors.

Community-Based Rehabilitation

CBR is more relevant than ever in the light of the new imperative to implement the Convention. It is now the accepted strategy in 90 countries, providing supplementary training to health, education or social welfare sta who already work in the community but o en lack the con dence to extend their skills to people with disabilities. WHO has recently published radically revised CBR Guidelines on the basis of experience and evaluation in many countries (WHO, UNESCO, ILO & IDDC, 2010).

Equally important is a well-designed strategy of providing awareness, information and con dence to people working in general community services who may have only occasional contact with people with disabilities but whose a itudes and actions are critical to the lives of these fellow citizens. This includes the whole range of health, social welfare and education professionals, as well as public o cials, the police, the judiciary and the media.

7. Public Awareness

Perhaps the biggest obstacle to the participation of people with disabilities is society’s persistent under-estimation of their ability to do so. Implementing the Convention provides an opportunity to promote a more inclusive society (Mi ler 2010, 2012).

People with disabilities are their own best ambassadors, especially when the general public becomes aware not only of their presence but also of the contribution that they can make to the community once barriers to their participation are removed.

Full involvement of the media is essential at a number of levels. These include awareness-raising about the rights, abilities and achievements of people with disabilities of all ages, in contrast to portrayals which re ect a charity or welfare model. The media should be provided with accurate and up-to-date information about government policy and its progress in implementing the UN Convention in ways which will have a direct and positive impact on the lives of people with disabilities and their families.

8. Think Regionally

The power of regional networks and partnerships has been demonstrated in the UN Decades of Disabled Persons, with the Asia-Paci c region launching its third decade in 2013. All are strongly supported by UN regional o ces and by the UN Development Group. Most of the international disability NGOs such as DPI, Inclusion International, World Blind Union, and World Federation of the Deaf also have a strong regional base and should now be fully supported by UN regional o ces. The European Union and most of its member states have rati ed the Convention and is in dialogue with a very active European Disability Forum.

CONCLUSION: CONFRONTING THE ECONOMIC CRISIS

Seeing an agenda for change in the midst of a world economic crisis is likely to meet with resistance.

We are used to governments – and even the United Nations in earlier days – using phrases such as ‘within existing resources’ or ‘as resources become available’, which is usually an excuse for doing li le or nothing. Such language is unacceptable where fundamental human rights are concerned. Few politicians would now say that there is no money for the education of girls, so how can lack of resources be used as a justi cation for the exclusion of girls and boys with disabilities from education?

The UN knows that its 190 member states are at vastly different stages of development and that implementation of this Convention will require resources, especially for countries with limited provision for all its citizens. That is why the Convention speaks of the need for evidence of “progressive realisation” of its principles and policies. That means targets, time-lines and accountability. Good intentions or even legislation are not enough.

The Convention was drafted by realists and ratified by politicians in full knowledge that it had resource implications. However these should not be exaggerated. Many resource-poor countries have made remarkable progress by harnessing community support and by judicious investment in human resources, including people with disabilities themselves. Resources tied up in institutional provision can be responsibly diverted to community services. People with disabilities, considered as ‘the poorest of the poor’, have become economically active as a result of job creation and start-up loans.

People with disabilities are not asking for a disproportionate share of resources but they do want to be given opportunities to develop what the economist-turned- philosopher Amartya Sen has called their ‘individual capability’ – a wish expressed by the novelist Katherine Mans eld many years earlier when she wrote, “I want to be what I am capable of becoming”. Such a wish is universal but is particularly apt for people with disabilities.

* 173 countries have now ratified the CRPD

You can download the article as a PDF here: UN Convention_Use it or Lose It_DCID July 2012_Peter Mittler (2016_07_08 11_51_56 UTC)

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