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.
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.
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.
This presentation will provide an overview of dementia including common types, epidemiology and treatments. It will also present highlights of current research into prevention and care, with the opportunity for Q & A.
Associate Professor Lee-Fay Low’s main areas of expertise are in home and residential care for older people, wellbeing in people with dementia, dementia risk factors for dementia, dementia literacy, and people from culturally and linguistically diverse backgrounds. She is particularly interested in developing and evaluating interventions to improve the quality of life of older people.
Lee-Fay has methodological skills in population studies, systematic reviews, clustered randomised trials, instrument development and evaluation, and translation of research into practice. She has attracted over 4 million dollars in research funding, authored over 80 peer-reviewed articles, six book chapters as well as two books (one co-authored with DAI Chair, CEO and co-founder Kate Swaffer) on dementia. She thinks that research is fun, and sometimes even admits to liking statistics.
This key note presentation was given by co founder of DAI, Kate Swaffer at the ADI conference held in Kyoto in April 2017. The WHO and others are now taking human rights for people with dementia seriously, this is an introduction about why it is so important, and the role DAI has played in the World Health Assembly adoption of the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva in May.
Membership of Dementia Alliance International is free, and open to anyone with a diagnosis of any type of dementia – go to www.joindai.org to complete the membership application form
Or you can subscribe to our newsletter or weekly blog by visiting us at www.infodai.org
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.
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.
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
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
DAI receives new NGO accreditation to the Conference of States Parties to the CRPD
The submission of DAI’s application for new NGO accreditation to the Conference of States Parties to the CRPD (COSP) was formally received on 23 May, 2017. In accordance with the Rules of Procedure of the Conference, our application was forwarded to States Parties to the CRPD, for their review.
At the first meeting of the 10th session of the Conference of States Parties on 13 June (10 a.m. to 1 p.m.), States Parties approved our new NGO application, on a consensus basis. This means we will be allowed to attend future COSP Conferences in our own right. Due to unsecured funding, we were unable to send anyone to New York this year to represent us, although we could have registered under ADI. Next year, we will be sure to find secure funding in time to attend! This is a portion of the acceptance email we received:
Congratulations! Your application for new NGO accreditation to the Conference of States Parties to the CRPD has been approved by consensus at its first meeting at the 10th session on 13 June, in accordance with the Rules of Procedure of the Conference. The list of newly accredited NGOs is copied below, and will also be published in the final report of the 10th session of the Conference of States Parties to the CRPD...
List of non-governmental organizations accredited to the Conference of States Parties to the Convention on the Rights of Persons with Disabilities on 13 June 2017:
2. Access Exchange International (AEI)
3. Action on Disability Rights and Development (ADRAD)
4. Alhassan Foundation for Differently Abled Inclusion
5. Associação Nacional de Membros do Ministério Público de Defesa Dos Direitos dos Idosos e Pessoas com Deficiência (AMPID) (National Association of Members of the Public Prosecutor’s Defense of the Rights of the Elderly and Persons with Disabilities)
6. Atfaluna Society for Deaf Children, ASDC
7. Benemérito Comité Pro Ciegos y Sordos de Guatemala (Meritorious Committee for the Blind and Deaf of Guatemala)
8. Cambodian Disabled Peoples Organisation (CDPO)
9. Center for International Stabilization and Recovery
10. Dementia Alliance International (DAI)
11. Disabled Peoples’ International – Europe (DPI-E)
12. Disabled Peoples’ International Korea
13. Dream for Disability Foundation
14. The Family Resource Network Inc.
15. Federação Brasileira das Associações de Síndrome de Down (FBASD) (Brazilian Federation of Down Syndrome Associations)
16. Fight the Stroke
17. Fundación Descúbreme (Discover Me Foundation)
18. Fundación Dime, A.C. (Dime Foundation)
19. Instituto ser educacional (Educational Institute)
20. International Disability Alliance
21. International Dyslexia Association (IDA)
22. International Society of Physical and Rehabilitation Medicine (ISPRM)
23. Kids Brain Health Network
24. Kpakpando Foundation for Physically Challenged Persons
25. Markaz-e-Umeed for Special Needs Children – Pakistan
26. National Federation of the Blind (NFB)
27. New South Wales Consumer Advisory Group -Mental Health Inc.
28. New South Wales Council for Intellectual Disability
29. New World Hope Organization
30. Potohar Mental Health Association (PMHA)
31. Progetto Filippide (Philippine Project)
32. Sierra Leone Campus Civitian International
33. Swedish Disability Federation
34. Tangata Group
35. The Lucy Foundation
36. UCP Wheels for Humanity
37. Women Enabled International
38. Women’s Refugee Commission
We are now in the process of creating our DAI profile in CSONET which then means we will be able to register our representatives for future Conferences of States Parties to the CRPD. We will also be applying for Consultative Status with the ECOSOC now that we have been accepted as an NGO.
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.
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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
The World Health Assembly today adopts the WHO Global Action Plan for a Public Health Approach to Dementia in Geneva.
We are delighted DAI member and Human Rights Consultant, Professor Mittler CBE arrived on Friday and took the baton from me to represent us all, along with Amy Little, Executive Lead of GADAA. Paola Barbarino, ADI’s CEO was privileged to make a statement on behalf of ADI and although it is not in the text of her statement, in the video recording of her speech, she specifically thanked DAI and GADAA for our contribution to this very important work.
ADI stated in their media release, “The plan opens a new era in understanding, care and treatment – but governments must act now. The plan acknowledges that dementia is not a normal part of ageing and that those affected should be helped to live as well as possible.”
Listening to the speakers on the live feed broadcast, I have felt that the global community and governments are taking this very seriously, and feel hopeful change will take place. DAI does have some reservations (read our response below), as do many others on the human rights elements of the plan, and how this plan will be implemented, evaluated and monitored. Feeling optimistic…
The following is DAI’s full response to the Global Action Plan for a Public Health Approach to Dementia:
We wish to applaud and recognise the leadership of Dr Saxena and Dr Saxena and their team, and also that of Dr Margaret Chan at the World Health Organisation. We greatly value their vision in working on this plan, the process of consultation with all stakeholders, and their efforts to provide this plan in record time of approximately six months. It is a plan which seeks to meet the needs of people with dementia, and their families.
“We need this plan because care is failing, and research for a cure is failing.”
With regard to the global action plan, whilst we are delighted it has been adopted, DAI wishes to ensure Health Ministers are aware that people with dementia and their care partners are rights bearers in the 173 Member States legally committed to the UN Convention on the Rights of Persons with Disabilities by ratification.
Within the Global Action Plan for a Public Health Approach to Dementia, human rights, empowerment and accountability are characterized as three cross-cutting principles.
Ten years after the adoption of the CRPD by the UN General Assembly, these principles cannot be realised without full commitment to the General Principles and 33 Substantive Articles of the CRPD and its Optional Protocol.
This is also reflected in the WHO’s Global Disability and Development Action Plan, its revised Guidelines for Community-Based Rehabilitation and in its new Quality Rights Indicators for Mental Health (including dementia).
All Member States who have ratified the CRPD will be aware of its precise requirements for citizens with other disabilities. These include an obligation for;
“States Parties to closely consult with and actively involve persons with disabilities, including children with disabilities, through their representative organisations… in the development and implementation of legislation and policies to implement the present Convention” (Article 4.3).
Ten years after the Convention, States Parties have provided little evidence of including persons with dementia in its implementation or monitoring. This may reflect a widespread perception that people with dementia are not rights bearers under this Treaty, and could also be seen an example of systemic discrimination, although not intentional.
We must always remember, people with dementia are fully recognised by the UN as CRPD rights bearers.
Furthermore, Health Ministers must have been involved in the response of their governments to the CRPD Committee in relation to people with sensory, physical, intellectual, mental health, cognitive and other disabilities.
Following representations by Dementia Alliance International and Alzheimer’s Disease International, the CRPD Committee has responded to our joint request to make it clear to Member States that persons with dementia and their care partners are fully included in the implementation of the CRPD on the same basis as those with other disabilities.
This year, dementia has been specifically mentioned in the review process on Canada and in a Parallel Report submitted by Disability Rights UK in the ongoing review of the UK government. Dement is now described in UN documents as a cognitive disability.
This issue was also discussed at the 2016 UN Social Forum on the Convention, particularly at a session on Under-Represented Minorities, which included DAI. The UN Special Rapporteur on the Rights of Persons with Disabilities chaired the session in the presence of the UN representative for all Geneva-based UN agencies.
The 1948 United Nations Declaration of Universal Human Rights and all subsequent Human Rights Treaties can now enable the 50 million people living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.
It is pertinent to remind us here, that 67 years after the 1948 UN Declaration, in 2015 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.”
All of civil society must work towards changing this, and there is a distinctive role for the WHO as Secretariat to the Plan to “offer technical support, tools and guidance to Member States”.
We therefore assume that, in the next phase of implementation, the WHO will ensure that Member States use the accountability framework of the CRPD as set out in Cross Cutting Action 10 (a) of the Plan.
We ask for the support of all Health Ministers and their governments to enable the 50 million people now living with dementia and the 100 million who must not be Left Behind in 2030 to have access to their rights in international law on the same basis as those with other disabilities.
Finally, it is now up to all of us to campaign and work together collaboratively, to ensure all people with dementia and our families are treated with the same rights, and equal access to health, disability support, dignity and health care, and are included, the same way as every other person in society.