“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.”
“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.”
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.
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 #standup4humanrights 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 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.
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:
“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)
“Dementia is a shift in the way a person experiences the world around her/him.” (Dr A Power, 2016)
“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:
This week DAI held it’s third (or fourth?!) Annual General Meeting where we elected in new members to join the 2018 Board of Directors.
Although not officially in their roles until January 1, 2018, we are very pleased to announce who they are today. Three board members have also agreed to continue on in their Executive roles, and David Paulson was elected and accepted the position of Vice Chair. As always, we thank the current board for their commitment and passion, and our outgoing board members. In January 2018, we will also publish our full Annual Report.
The incoming 2018 Board of Directors will be:
Kate Swaffer, Chair & CEO
David Paulson, Vice Chair
John Sandblom, Treasurer
Eileen Taylor, Secretary
Volunteers: Sarah Yeates and Karen Bland (and soon, hopefully Leah Bisani!)
We would also like to thank Ian Gladstone and Valerie Schache (Val has been a co-opted board member this year), the two DAI members who were not elected as 2018 Board members, but who we hope will become or continue as active members in leadership roles, including as ‘shadow’ board members’. We thank them sincerely for nominating for the 2018 Board.
For those who could not attend the meeting, you can read the Chair’s Report here:
Chair’s Report, AGM, November 14/15, 2017
Welcome to everyone, and my sincere thanks to members of the board for 2017 for their hard work and commitment to DAI. Special thanks also to outgoing 2017 board members, Brian Le Blanc and Mick Carmody who stepped down earlier in the year for personal and health reasons and to the board members who are continuing on.
As we come to the end of another very busy year of advocacy and activism by DAI members, and others, either collectively or individually, I would like to thank everyone for their energy and efforts for all people with dementia. Today we hold our annual Annual General Meeting, and this year we have six nominations for four vacancies. This is such progress from our small start by 8 people diagnosed with dementia wanting to advocate as a global team. I’m proud of what we have achieved, our past and current Board members and Action group members, and am looking forward to the 2018 team being voted in.
Membership currently remains exclusively for people with a medically confirmed diagnosis of any type of a dementia from all around the world, and we continue to seek to represent, support, empower and educate others living with the disease, and the wider dementia community, and are an organization that strives to provide a unified voice of strength, advocacy and support with a dream for individual autonomy and improved quality of life for people with dementia and our families supporting us.
On behalf of us all, my very special thanks must go to our very hard working and loyal DAI volunteers. We could not have done it without them, and are indebted to tem for this support. Sarah Yeates continues to support DAI by attending the board meetings and AGM and providing the Minutes, as well as other business and operational advice, and is also helping us with the Strategic Plan. Thanks also to Karen Bland for her volunteer work and support with the support groups.
The Richard Taylor Memorial Advocates Award On World Alzheimer’s Day, September 21, we announced the winner of the 2017 Richard Taylor Memorial Advocates Award. Our long time member and a dear friend to so many around the world Susan Suchan was the recipient this year, and her incredible passion and drive to be a voice for those losing theirs, especially with PPA has been extraordinary, and has continued in spite of her rent diagnosis of cancer. DAI also sends Susan and her family our love at this difficult time.
World Alzheimer’s Month 2017 This year, we were less frenetic than in 2016 when we posted a daily blog, but importantly, we held our first public Seminar, also held as an online Webinar, co-hosted with the Dementia Advocacy Advisory Team in Brisbane, and supported by BlueCare, a service provider in Queensland. It was very successful, and included a powerful presentation from the two daughters of a mother with YOD now in aged care. This will be available on YouTube very soon.
Conferences and other events DAI members were well represented in Kyoto at the ADI conference in April, and again at the ADI Regional meeting held in conjunction with Alzheimer’s Indonesia. We hope to have strong representation at the ADI conference in Chicago next year, and again will support members who have never attended to submit abstracts.
I have represented DAI in my role previously titled the SE Asia Regional ADI Ambassador at a number of meetings in Taiwan, Japan and Indonesia, supporting their local Alzheimer’s offices to empower people with dementia to self-advocate. After a number of years of supporting NZ, we are thrilled they have recently set up their own Dementia Advisory Group of people with dementia; Taiwan is close to doing the same. In Taiwan, I also met with governments, the department of criminal justice on rights of people with dementia and the President of the Control Yuan, and am working closely with them on their national dementia strategy, as well as speaking at many public meetings. Taiwan and Indonesia this year, have had people with dementia speaking publicly for the first time.
Human Rights Update Our work on claiming the Human Rights for all people with dementia means we are legally entitled to be included, and not just consulted, or represented by others. We are also entitled to the appropriate disability support that any other persons or groups of disabled people are afforded. DAI works as an independent self-advocacy organization of people with dementia which is in a strategic partnership with Alzheimer’s Disease International (ADI), and where collaboration is also possible with all national Alzheimer’s organisations and national or local Dementia Working Groups. We work actively with the Dementia Working/Advisory Groups and other local or national groups, as requested by them to support their local or national work, or our global work.
It was exciting to attend the World Health Assembly in tandem with Peter Mittler, so that someone from DAI was there when the WHO Global Action Plan: A Public Health Response to Dementia was unanimously adopted in May. This was a big step, but there is a lot of work to be done by everyone, including by DAI towards the implementation of the Action Plan.
A number of members have also been busy with the continued pursuit of a human rights based approach to dementia, and many people with dementia have attended various WHO meetings or forums in Geneva. DAI has also become a full member of the Conventions of State Parties, and in March 2018, will apply to be in official relationships with the WHO. We have also been working with them by attending events and workshops in the implementation of the Global Dementia Action Plan adopted in May 2017.
DAI and ADI jointly produce a document Access to CRPD and SDG’s by Persons with Dementia, to present to ADI council members at the ADI conference in Kyoto, including a workshop for members on how to implement the CRPD for people with dementia in their countries.
DAI has made a number of submissions this year, including one this week to the WHO highlighting the draft of the 13th General Programme of Work 2019-2023 does not include people with dementia or older persons. We regularly co-sign letters written by the LEAD Coalition in the USA, in an effort to improve health care in the USA, and recently submitted a DAI letter to the U.S. Department of Health and Human Services, the Office of the Assistant Secretary for Planning and Evaluation Strategic Planning Team regarding their Strategic Plan on behalf of our members in the USA. In this letter, we highlighted the opportunities for their draft Strategic Plan to be more specific about strategies for diversity in clinical trials and research as well as strategies for improving quality of life among people with Alzheimer’s disease and other forms of dementia
The Older Persons Convention is currently under review, and we are also working towards ensuring it is aligned to the CRPD, and in which we hope the final draft will reflect this as well as include dementia.
Dementia Working Groups
This year, we acknowledge and congratulate the newly founded 3 Nations Dementia Working Group which represents England, Ireland and Wales was launched in May. New Zealand also just launched their first Dementia Advisory Group of people with dementia. The JDWG is becoming involved in global human rights work, and the OADG continues to work hard to turn human rights from rhetoric to action in Canada. Many national and local Dementia Working Groups are either increasing their presence, or being set up, ensuring the voices of people with dementia and our families are being heard.
A Meeting Of The Minds Webinars We have had an excellent year of events with many international speakers, and the program for 2018 is already in progress. Next week, we focus on OT, and in December, we will host two social events, one to celebrate Christmas, and the other, and online Faith service for those members who no longer wish to attend their local Church. If there are topics, or certain speakers you would like hear from next year, please let us know.
Fundraising Fundraising has been slow this year, but I wish to officially and personally thank every single person who has donated to DAI. Whether is it $5 or $500, every amount counts, and what we can do with 20, most other organisations would need more than $2000! We have to make the small funds we have stretch a long way, and also must keep funds in reserve for our future. Our fundraising team, also part of the Action Group are getting organised for campaign to get as many members to Chicago for the ADI conference in July next year as possible.
We also acknowledge and thank ADI for their ongoing support, strategic partnership and sponsorship.
International Disability Alliance We applied for membership of this organisation, as it will give us a much better grounding in our human rights and disability focus, and we have recently retained observer status for another year. IDA has set up a committee to review and revise its Constitution, in order to enable an organisation such as DAI or Autism International to become full members, without having to have national DAI organisations. Professor Peter Mittler represented us recently at their AGM in Athens, and worked hard to encourage the setting up of the 2018 committee to review their constitution to allow an organisation such as DAI to become a full member. He continues with us in a consulting role.
Website update We are in the process of updating out website, to make it more accessible and enabling, and where we will also soon have online member and supporter discussion forums similar to Talking Point.
Brain health Hub We have also recently set up a private Facebook group and weekly meeting, called The Brain Health Hub to support members wanting to manage dementia (either themselves, or with the support of their own doctor) with a lifestyle approach to dementia including the Bredesen Protocol.
DAI Printing We are also thrilled to be able to announce that Graphic Print in Adelaide has agreed to provide all of our printing pro bono. It wuld be helpful to find a print company in each country, e.g. the USA, UK and Canada, to ensure shipping costs do not undo the benefits of this.
Financial reporting update This year, we have had the services of Mr. Bill Kerr, from Hillstrom, Kerr and Company Incorporated to complete our monthly financial reports, and we will publish our second Annual Report in January 2018
Thanks to you all We continue to welcome new members and are finding the growth of our support groups is a unique free global service actively supporting and empowering our members to live with a better quality of life. My sincere thanks to everyone for their continuing dedication to improving the lives of people with dementia and our families, and I look forward to working with the new board in 2018.
Finally, I close by reminding us of the Margaret Mead quote, which we have had on our website from day one of DAI’s existence:
Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it’s the only thing that ever has.
We look forward to sharing our 4th birthday with your all in 2018!
Last week as Chair and CEO of DAI, Kate Swaffer was invited to attend the mhGAP Forum (mh = mental health) in Geneva. This involved some pre meetings and planning, and then two full days at the WHO attending plenary sessions, and attending topical side sessions.
Although we felt there was a priority to attend the Quality Rights side session, as DAI has been involved in that work, Kate was invited to present at the side session discussing the Global Action Plan on Dementia: A Public Health Response. The following is her speech:
Implementing the Global Dementia Action Plan into policy
“Thank you for this invitation to speak today, representing members of Dementia Alliance International, all people formally diagnosed with dementia now representing members from 44 countries. Thank you also to Drs Saxena and Dua and their team at the WHO for their work on the mhGAP App launched earlier today, and for the Global action Plan on A Public Health Response to Dementia, adopted earlier this year at the World Health Assembly.
I’d like to commence by saying the symptoms of dementia must be seen and supported the same way as people with any acquired cognitive disAbilities, and that by doing this, we will all then come to understand “there is a systemic and gross underestimation of the capacity of all people diagnosed with deMEntia, even in the later stages of the disease.”
Late stage management of dementia is still prevalent, and continuing this will have a significant cost, not only to the well being and Quality of Life of people with dementia and our families, but also on our economy.
In spite of often receiving earlier diagnoses, we are still being Prescribed Disengagement®, i.e. being told to go home and die via aged care, as if there is ‘nothing that can be done’
We are not provided with rehabilitation or other re-abling post diagnostic support
We are not being provided with the same disAbility assessment and support as every other person with an acquired disAbility receives
These points are all relevant to national dementia plans
By harnessing the UN CRPD and other Conventions in policy and national dementia strategies, we will:
Significantly improve the quality of life of persons with dementia and our families and care partners
Reduce the economic cost of dementia to individuals, families and governments
Ensure dementia inclusive and accessible communities
The CRPD is relevant to persons with dementia and there can be little doubt that persons with dementia are addressed by the definition of disAbility in the Convention, and are therefore intended beneficiaries.
The WHO Global Disability Action Plan 2014-2021 is fully based on CRPD Principles and Articles, and it also has good indicators for assessing progress. Hence this also means CRPD must be reflected in regional and national dementia plans and strategies.
The WHO Global Action Plan: A Public Health Response to Dementia set the stage in May 2017. Governments, in partnership with civil society, people with dementia, their families must start now by preparing national dementia plans in their own countries, which incudes a human rights approach to dementia. As I understand it, the only truly accountable parts of the Global Action Plan are the 7 cross cutting principles.
Community Based Rehabilitation (CBR) needs to be considered when implementing this Action Plan into policy. CBR is an important part of human rights, and of dementia friendly communities. The aim of community–based rehabilitation is to help people with disAbilities, by:
Establishing community–basedprograms for social integration, equalization of opportunities, and physical therapy rehabilitationprograms for people with any type of disAbility
This is important in the context of the GDAP and in the development of national policies.
For our communities to be supporting people with dementia, based on human rights, a new pathway of support is needed. It is also part of being a dementia friendly society, as without adequate health care and disability support, it won’t matter how many dementia friends programmes a country has, there will be very little tangible difference to our lives.
We need a new pathway of psycho social and disAbility support to live with, not only die from dementia, which is not based on deficits, and does more than assess ADL’s and medication.
Focus on well being/QoL
Acquired Brain Injury rehabilitation post Dx, that includes Speech pathology, Neuroplasticity, Occupational Therapy, Neurophysiotherapist.
disAbility assessment and support , immediately post diagnosis
Grief and Loss counselling, not just information about BPSD.
Peer to peer support groups for oeople with dementia, our care partners and families, and especially our children
Support to maintain pre dx lifestyle
Support to continue working if YOD (and is a personal choice)
Support to continue usual activities, socialising, sport, recreation, community engagement, etc
Inclusive and accessible communities (not just dementia friendly)
It is also imperative we focus on risk reduction strategies – e.g. life style changes (as we do for other chronic diseases).
DAI’s Next Steps:
Working with countries and civil society to ensure human rights and implementation of CRPD, SGD’s and CBR
Supporting Alzheimer’s societies in developing HR policies & plans
Continuing to submit parallel reports to the UN and the WHO
Promote human rights approach to dementia at all conferences and events
Raising our concerns about human rights of persons with dementia in WHO Disability Policy, CBR and regional and national dementia strategies
Working with disability organisations, e.g. IDA and IDDC
DAI is open to suggestions, advice, and above all support from all organisations and groupings of or for people with dementia. Some of our recommendations include:
Engaging with the United Nations Committee on the Convention on the Rights of Persons with Disabilities (CRPD), including through policy making processes
Seeking to develop productive relationships with the global network of National Human Rights and Disability Rights Institutions, e.g. the International Disability Alliance
Preparing and disseminating widely information, and developing policy on the UNCRPD and the rights of persons with dementia
Encouraging and supporting national and regional groups and organisations to participate in the examinations by the United Nations Committee on the Rights of Persons with Disabilities and other Conventions.
Finally, I have some questions for countries and civil society to consider:
To what extent are your dementia policies based on human rights?
How closely do you work with other disAbility organisations in your country or region?
Do you know how they have used CRPD?
Will you join them to ensure that people with dementia are included?
How are we going to measure 75% of countries have implemented the GDAP by 2025?
Chair, CEO & Co-founder
Dementia Aliance International
We are pleased to be part of the launch of this video, highlighting the impact of dementia on women, discussing the higher incidence of women people diagnosed with it, and the higher numbers of woman who become care partners to someone livign with it. Thanks to Amy Little and GAADA for pulling this project together in time for World Alzheimer’s Month 2017.
“Dementia is a global women’s health, social care and rights issue that can no longer be ignored.
And Then I Looked Up Dementia brings together women living with dementia, the actress Carey Mulligan, iNGO women’s specialists, dementia experts, government representatives and others to speak out for women affected by dementia everywhere.
Dementia is listed by the World Health Organisation in the top ten causes of death for women worldwide and is recognised as a global health priority. Around the world, more women than men live with dementia and face gender-specific barriers to living well with the disease.
Globally, women provide the majority of both unpaid and formal care to people living with dementia. People living with dementia can face stigma and even abuse due to their condition, for older women, age and gender-discrimination can compound this treatment. Take action to get it right for every woman living with or affected by dementia around the world.” GADAA, 2017
We understand there are a lot of people who see this approach as futile, especially if they have been diagnosed many years ago and their dementia has progressed. Perhaps some even see it as a scam.
However, for many of us diagnosed with dementia who have already worked hard changing our lifestyles and improving our health, and who also believe by doing so we may also have slowed down the progression of our individual dementias, it is still hopeful. Make up your own mind, but please do not discount new evidence.
This protocol is based on evidence based research, and hopefully one day, advice for people with dementia on improving our lifestyle, our diet and offering us appropriate disability support and authentic rehabilitation will become the norm, as it is already for most of the other chronic diseases. Improving well being and quality of life, even if it is not a cure (and even if it does not reverse or stabilise dementia), has to be a good thing…
It was a very lively Q & A Session following this webinar and which lasted over an hour, although for privacy reasons, we never show that part of the webinar publicly.
In DAI’s “A Meeting of the Minds” monthly Webinar series, we feature people who have unique perspectives on dementia and who challenge the status quo, most often speakers who are highly regarded eminent international academics, clinicians and well regarded speakers. These monthly webinars focus on a variety of topics, and provide an opportunity for people with dementia to connect with the wider community of those living with the disease. To participate, you need only an Internet connection, while a webcam and microphone will ensure a fuller experience.
Our guest speaker this month is Dr David Jenkins presenting on Professor Dale Bredesen’s protocol which he is trained to provide for patients titled:
“Preventing, stabilizing and reversing early Alzheimer’s”.
About Dave: Dr Dave Jenkins qualified from Otago University Medical School in New Zealand in 1982. His career includes general practice, senior lectureships at Auckland medical school, executive director for education for an Asian corporate health project, and founding Humanitarian NGO SurfAid and currently is a functional medicine practitioner specializing in stabilisation and reversal of cognitive decline.
Dave has won many awards including the prestigious social entrepreneur award the Rainer Arnold Fellowship and in 2007 and SurfAid was chosen from over 49,000 NGOs was voted “one of the best Non Government Organizations in the world” in 2007 by the World Association of NGOs winning their humanitarian award for that year.
His main work and mission is to dramatically improve the screening, prevention and treatment for all people with cognitive decline in Australasia and beyond. He has trained with Professor Dale Bredesen who has documented reversal in cognitive decline and early Alzheimer’s in over 230 cases using a multifaceted metabolic enhancement program. Dave is now documenting the first reversals of mild to moderate Alzheimer’s in Australasia. Dave is planning to collaborate with Australian scientists and contribute to a multisite trial of “The Bredesen Protocol” in 2017.
About the Webinar:
1. Successful case studies will demonstrate the programmatic components of reversing cognitive decline using the Bredesen Protocols
2. Learn the current challenges of applying the Bredesen Protocols in Australasia and details of the future controlled trials
Take Home Message
Using a comprehensive and highly personalised Functional Medicine approach Professor Dale Bredesen has reversed over 230 cases of cognitive decline including MCI and early and moderate Alzheimer’s at a 88% success rate including improvements in symptoms, cognitive scores and hippocampal volumes. Seventy five percent of those that had to leave work went back to work. Very early signs in Australasia are also confirming that cognitive decline can be prevented, stabilised and reversed using the Bredesen Protocols.
Wednesday July 27, 2017, USA/CA/EU/UK
Start Time (USA/CA/UK/EU):
2.00 p.m. Pacific Time (San Francisco);
3.00 p.m. Mountain Time (Denver);
4.00 pm Central Time (Chicago)
5.00 p.m. Eastern Time (Washington DC, New York);
2.00 p.m. Vancouver, Canada;
11.00 a.m. in Honolulu, Hawaii
10.00 p.m. in the UK (apologies to our members in the UK and Scotland);
11.00 p.m. in Amsterdam, Paris and Budapest (apologies to our members in Europe).
ThursdayJuly 27,2017, 2017 AU/NZ/JPN
Start time (Australia/NZ/Japan/Indonesia)
6.30 a.m. in Adelaide;
7.00 a.m. in Brisbane, Sydney, Canberra, Melbourne;
You will receive an email confirmation that contains login details and instructions on how to join the online Webinar.
COST TO ATTEND: Attending our events supports everyone connected to dementia, whether the person diagnosed, our care partners, or the professionals and research community who work to support us and improve our lives.
DAI MEMBER: FREE
UNEMPLOYED CARE PARTNER: FREE
EMPLOYED OR SELF EMPLOYED PERSON: FREE: PLEASE CONSIDER MAKING A DONATION
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]!
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.
“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.
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
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
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).
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.
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.
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.
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.
Driedger D (1989). The Last Civil Rights Movement. London: Hurst.
Equalities and Human Rights Commission (2010). The United Nations Convention on the Rights of Persons with Disabilities: What Does It Mean for You? A Guide for Disabled People and Disabled People’s Organisations. London: EHRC. www.ehrc.org.uk
Inclusion International (2008). Priorities for People with Intellectual Disabilities in Implementing the United Nations Convention on the Rights of Persons with Disabilities: The Way Ahead. London: Inclusion International. www.inclusion-international.org
International Disability Alliance (2010). E ective Use of International Human Rights Monitoring Mechanisms to Protect the Rights of Persons with Disabilities www.internationaldisabilityalliance. org
Mittler P (2010). Thinking Globally Acting Locally: A Personal Journey. Bloomington, Ohio and Milton Keynes: Authorhouse and Amazon.
Mittler P (2012). Overcoming Exclusion: Social Justice Through Education. World Library of Educationalists. London: Routledge.
O ce of the High Commissioner on Human Rights (2007). OHCHR Handbook for Parliamentarians. Geneva: OHCHR. www.ohchr.org
O ce of the High Commissioner on Human Rights (2010). Monitoring the Convention on the Rights of Persons with Disabilities: Guidance for Human Rights Monitors. Professional Training Series 17. Geneva: OHCHR www.ohchr.org
Sen A (2009). The Idea of Justice. London: Allen Lane
United Nations (2008). Convention on the Rights of Persons with Disabilities: Advocacy Toolkit. New York: United Nations
United Nations Development Group (2011). Including the Rights of Persons with Disabilities in United Nations Programming at Country Level: A Guidance Note for UN Country Teams and Implementing Partners. New York: United Nations.
United Nations International Children’s Emergency Fund (2007). Promoting the Human Rights of Children with Disabilities. Innocenti Research Series 13. Florence: UNICEF. (www.unicef-irc. org/publications
United Nations International Children’s Emergency Fund (2008). It’s About Ability: A Guide to the UN Convention on the Rights of Persons with Disabilities. www.unicef.org/protection
United Nations International Children’s Emergency Fund (in press). State of the World’s Children: Children with Disabilities. New York: UNICEF. www.unicef.org
Verdugo M , Navas P, Gomez L & Shalock R (2012). ‘The concept of quality of life and its role in enhancing human rights in the eld of intellectual disability’. Journal of Intellectual Disability Research, 56, 9, doi:10.1111/j.1365-2788.2012.01585.x
World Blind Union (2012). Nothing About Us Without Us: A Toolkit for the United Nations Disability Convention. www.worldblindunion.org
World Health Organisation (2001). International Classi cation of Functioning, Disability and Health. Geneva: WHO.
World Health Organisation (2007). Atlas: Global Resources for People with Intellectual Disabilities. Geneva: WHO
World Health Organisation (2012). The WHO Qualityrights Toolkit to Assess and Improve Quality and Human Rights in Mental Health and Social Care Facilities. Geneva: WHO. www.who.org/ mentalhealth/publications
WHO, UNESCO, ILO & IDDC (2010). Community Based Rehabilitation: CBR Guidelines. Introductory Booklet. Geneva: WHO www.who.int/disabilities/cbr/guidelines/en/index.html
World Health Organisation & World Bank (2011). World Report on Disability. Geneva: WHO. www.who.int/disabilities
World Health Organisation & Alzheimer’s Disease International (2012). Dementia: A Public Health Priority. Geneva: WHO. www.who.int/mental-health
Degener T (2005). Disability Discrimination Law: A Global Comparative Approach. In Lawson, A, Gooding, C . (eds.) Disability Rights in Europe: From Theory to Practice. Portland: Hart Publishing
Disability Rights and Promotion International (2012). Guide to Disability Rights Monitoring. York University. http://drpi.research.york.ca
Disabled Peoples’ International www.dpi.org
www.dcidj.org Vol 23, No.2, 2012; doi 10.5463/DCID.v23i2.141
European Disability Forum www.edf-feph.org
Harvard Law School Project on Disability (2010). Change Your Life with Human Rights: A Self Advocacy Book for People with Disabilities www.hpod.org/involve (available in Spanish and Japanese)
Inclusion International www.inclusion-international.org
International Disability Alliance www.internationaldisabilityalliance.org
International Disability and Development Consortium. 23 disability and development NGOs promoting inclusive development. www.iddcconsortium.net
International Federation of the Hard of Hearing www.i oh.org
International Labour Organisation (2002). Managing Disability in the Work Place. Geneva: ILO. www.ilo.org
Leonard Cheshire Disability and Development www.lcdisability.org
Leonard Cheshire Database of Government and NGO Projects in Africa, South Asia, South East Asia, Asia and Paci c. www.disabilitydatabase.org
Organisation for Economic Cooperation and Development (2007). Students with Disabilities, Learning Diffculties and Disadvantages: Statistics and Indicators. Paris: OECD. www.oecd.org/ edu/equity/sen
Rieser R (2012). Implementing Inclusive Education: A Commonwealth Guide to Implementing Article 24 of the UN Convention on the Rights of Persons with Disabilities (Second Edition) London: Commonwealth Secretariat. [email protected]
United Nations (2006). Convention on the Rights of Persons with Disabilities. New York and Geneva: United Nations. www.un.org/disabilities for current information and newsle er link
United Nations Economic and Social Commission for Asia and the Paci c (2010). Disability at a Glance 2010: A Pro le of 36 Countries and Areas in Asia and the Paci c. Bangkok: Social Development Division ESCAP. www.unescap.org.
United Nations Educational, Scienti c and Cultural Organisation (2003). Open File on Inclusive Education: Support Materials for Managers and Administrators. Paris: UNESCO. www.unesco. org
United Nations Educational, Scientific and Cultural Organisation (2004). Embracing Diversity: Toolkit for Inclusive Learning in Friendly Environments, Bangkok: UNESCO www.escap.org
A few weeks ago at the ADI2017 conference in Kyoto, DAI and DAAT member John Quinn gave a great presentation We Need to ‘Think Outside the Box”, especially in relation to rehabilitation enablement and dementia. Thank you John for allowing us to showcase it here.
“A friend of mine was diagnosed with Fronto-Temporal Dementia. He used to be a truck driver and tinkered with cars and engines most of his life. But only 18 hours after he had MRIs etc that resulted in his diagnosis, he lost his licence. He felt that his whole life had shattered. At the time, he was in his mid 40s, with four children. His wife had to return to full time work to continue paying off the mortgage and to support the family. But by the time he was 50 years old, when his youngest child was 7 years old, he was placed into a Care Facility, because there was no one at home to care for him. The average age of the other residents was about 85 years old. He felt hopelessness… and also a failure, because he couldn’t provide for his family.
There was no immediate rehabilitation for him, however; soon afterwards, his friend told him about a group of men who were rebuilding an antique truck. Years later, they still catch-up every week to work on this project together. Now he is proud of what he is achieving albeit small steps. In time, the organisers hope that there’ll be a restored, functioning, antique truck available for street parades, TV advertisements and movie sets.
This is an example of what rehabilitation might look like. OR is it enablement? OR… is it empowerment?
In some health areas, for example with various forms of addiction, the word enablement has different connotations than in the Dementia arena, so we must be mindful of the meaning of words here, too. Also, I’ll later refer to how I felt disempowered by others, then later with time and unexpected support, regained the sense of feeling empowered. Some of us who live with Dementia are advocating for the correct use of language in the media and within our Communities. Perhaps here is another area where better awareness of language can improve our lives. Whatever the correct word is, the result should be better outcomes for people living with Dementia. Here in this context, for simplicity, I’ll use Rehabilitation and Engagement interchangeably. However, it will only be effective if it empowers us.
In an ideal world, some types of rehabilitation relevant to the person’s current life and the personal symptoms of Dementia should be offered at the time of diagnosis. Everyone has a Right to Rehabilitation to his or her changing abilities, BUT let’s not dismiss ANY type of rehabilitation. We need to ‘Think Outside of the Box”, for the best outcomes to empower us. Everything with value will be valuable!! Who determines what is valued? I believe that it must be the person with the diagnosis in the first instance. This type of conversation and the ensuing negotiation is relevant regardless of the age of the person living with Dementia.
However, it is more important when someone young is diagnosed, as there is an emerging realisation that when a younger person is diagnosed with Dementia at the earliest opportunity, there will be a longer period of successful engagement with his or her current lives. Immediate support and contact with someone who can guide the person living with Dementia and their family through this tumultuous life-changing period, would maintain some hope for the possibilities for the future; and, feelings of being valued as a person who can still contribute to their family and society.
At least in my own case, I believe that I still could have had a sense of purpose and self esteem… But I lost them when I lost my career. The career that I loved and was respected in, had taught me skills and knowledge for 35 years. Yet suddenly, in 2008, I not only couldn’t do it due to my symptoms, I didn’t have the opportunity to return to it with support or adaptations post diagnosis.
Interestingly, for the past two years, with encouragement and lots of support, I’ve been able to use those skills that I learnt throughout my lifetime in my career… in my advocacy. This advocacy has also opened many new pathways and opportunities for me, that I couldn’t have envisaged, and I value that. Through my advocacy, I’ve met new, genuine lifelong friends; I’ve had the opportunity to meet with people who inspire many; and I’ve been to places that I wouldn’t have considered before. I’ve regained a passion, a focus and a purpose again. Prior to this, I’d felt that everything about who I was, had been taken away from me…..by Dementia, and by the responses of those who could have offered support if they’d only looked at me as the person who I was…………not just as Dementia.
I can’t learn new things easily. I get lost in the process and if I do manage to learn new things, it takes an enormous amount of time and effort on my part, and patience by others. However, I still had, and still have, many skills and expertise in particular areas that the post-diagnostic model forgot to address or encourage. In my case I was an educator…..a School Principal or Deputy Principal of large Primary Schools. Therefore, I spent my adult life in education, learning new things and mentoring others; encouraging both the students and fellow educators to engage in learning skills and knowledge for a successful life. In other words, life long learning
But who else was I? What else was I passionate about?
I’ve always been a caring person and a family man.
But also, what comes to mind is my interest in active participation in sports. I not only trained and encouraged the students in a number of sports, at the school that I was at, but I also enjoy being a spectator of many sports.
During the last 25 years, I’ve run 3 marathons, about 20 half-marathons, a triathlon, and 30 charity fun runs, so as you can imagine I’ve always been reasonably fit. However, I have also participated in many challenging feats in recent years since my diagnosis, such as the Great Wall of China half-marathon, and climbed Mt Taranaki in New Zealand. In addition, since I started being involved with advocacy, I’ve also used my athletic ability to raise much needed funds and awareness in 2 separate challenges…..cycling through Vietnam and Cambodia after buying a bike when I couldn’t drive any longer; and walked our second Camino de Santiago, 825 kms from France across the top of Spain. Whist I could do the physical challenges they wouldn’t have been possible without the support of others, particularly my partner Glenys who did the planning, organisation and problem solving to ensue that I was able to successfully undertake these events.
So each one of us already had expertise, interests, and passions prior to our diagnosis, which if acknowledged and carefully nurtured and encouraged, can enable us to remain independent and interested in engaging in our future lives, albeit with some adaptations and support where necessary.
We need to look beyond the deficit model of what we can’t do, and instead look at the skills and knowledge that we already have. Board-certified Internist and Geriatrician, Dr Allen Power agrees…In his book ‘Dementia Beyonds Drugs’, he states…“Although there are cognitive deficits, many complex abilities are already preserved, which should be identified and cultivated”…..Others in the medical field; allied health professionals; Governments and organisations; and, our family and friends, need to get on board with this concept to encourage us to maintain our skills; and, provide individualised personal programs and career support, so that we can continue to be independent for as long as possible.
I already know what I can’t do. I knew about them years before I received an accurate diagnosis. I’m reminded of them daily when I get confused or frustrated, knowing that everyone is thinking at a different speed and level. I am particularly reminded of them, when I travel; have the rare late night with my son at the football; or, after the many social interactions that occur throughout each day. And strangely, I’m subtly reminded of them when some people challenge my diagnosis, because I can interact with others and I’m reasonably fit, therefore don’t look like I have Dementia. However, they don’t see how I can’t function for hours, after engaging in most activities.
Please don’t misunderstand me though. The type of rehabilitation that people usually think of, is also very important, for example, Occupational Therapy, Speech Therapy, Physiotherapy. However, when it’s Dementia, aren’t these therapies really enablement? I’m never going to rehabilitate back to close to my former self, as I may have after a stroke or heart attack.
In about 2011, after my diagnosis, Glenys said to my neurologist that she was aware that there are Speech Therapists who specialise in rehabilitation after a Heart attack or Stroke. She questioned whether there was one who specialised in Dementia, to hopefully provide some strategies and knowledge that we didn’t have, that might assist us in our daily communication……His reply was that he’d never been asked that question before.
There have been some changes though. This time last year, we were asked to give the Consumer Perspective to the Australian Federal Minister for Health on a new government document for People with Dementia. This document has some excellent points enmeshed in the 109 ‘Principles of Care’.
There are two references to accessing Speech Therapists…..But we also need speech/language therapy for people who have word finding, processing problems, or other language concerns etc, like I have?
The medical profession needs to consider authentic rehabilitation which is vital for younger people living with dementia or those early in the dementia process. Are some attitudes because dementia is a terminal condition for which there is no cure? I don’t know…..However, through my involvement on a national committee where up to 40 different research activities are currently happening, I’m aware that there’s some good, innovative research that includes a focus on empowerment. So there’s emerging hope for a change in attitudes.
I have personally done a little research on what can impact on the progression of Dementia and what keeps our brains healthier…..things like the effects of music; and learning new languages and skills. As a result I’ve formed an acronym….It’s my N.A.M.E.S……names….N for Nutrition; A for Attitude and Acceptance; M for Mental activities, Music and Meditation; E for Exercise and Enjoyment; and S for Support, Sleep, Socialisation, and Setting Goals. Some of the activities that I engage in for my NAMES, include, learning Spanish; doing crosswords with my non-dominant hand; volunteering each week; advocating; writing to the Editor of the local newspaper; and, writing a blog. My N.A.M.E.S. keeps me on track to do what I believe will help me.
I want you to consider these questions. What value do our existing skills hold? What value is there in learning through experience rather than in isolation, for example, in a one-on-one class with a therapist? What value do we place on participation with fun, social engagement? How can we be empowered through support and opportunity to live as independently and as fulfilling a life as possible? I’ll finish with another quote by Dr Allen Power, in “Dementia Beyond Drugs”. Well-being is not dependent on cognitive and functional ability and should be maximised in all people. There has to be a paradigm shift in the way we view people with Dementia