Category Archives: Human rights

Announcing the 2018 DAI Board & the AGM Chairs Report

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:

  1. Kate Swaffer, Chair & CEO
  2. David Paulson, Vice Chair
  3. John Sandblom, Treasurer
  4. Eileen Taylor, Secretary
  5. Maria Turner
  6. Phyllis Fehr
  7. Jerry Wylie
  8. Bill Turner
  9. Agnes Houston
  10. James McKillop
  11. Alister Robertson
  12. Carole Mulliken
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!

Best wishes and thanks,
Kate Swaffer

Phyllis Fehr at the NCD Alliance Workshop: “Our Views Our Voices”

Dementia Alliance International (DAI) board member and ODAG Human Rights Advisor Mrs Phyllis Fehr represents DAI at the NCD Alliance Our Views, Our Voices workshop. This workshop has brought together people living with NCDs from across the world. The objectives are to:

  • Share the Our Views, Our Voices consultation results with participants
  • Contribute to finalising the Advocacy Agenda of People living with NCDs
  • Explore notions of community identity among people living with NCDs
  • Articulate the vision of the Advocacy Agenda
  • Discuss how to implement the Advocacy Agenda of People Living with NCDs

The workshop will result in the finalizing of the Advocacy Agenda of People Living with NCDs which will be launched at the Global NCD Alliance Forum. It will also serve to cultivate a group of people living with NCDs that will go on to champion the Our Views, Our Voices initiative.

Representing DAI, Phyllis was invited to present as part of the second workshop on Day one, on social justice. This is her speech:

Thank you for this invitation to speak today, representing Dementia Alliance International, whose members are formally diagnosed with dementia representing 44 countries.

It is also an honour to be here to represent the estimated 50 million people living in the world living with dementia, also listed as a Non Communicable Disease. We know there are a lot more people without a diagnosis, too often one they do not want, often because of stigma and social justice related issues. 

When I was 48 when I started noticing signs of dementia, but it took until I was 53 to get a formal diagnosis. Once I received this diagnosis I was told to go home, get my affairs in order and try to enjoy the time I have left.

I did this at first but it wasn’t good enough for me either. I still had my intelligence, I still had all my nursing knowledge, I felt I could use this to help others living with dementia and I initially did do this in Ontario Canada. I sit on the Ontario Dementia Advisory Group (ODAG), and am one of four co founders, as well as their human rights advisor. We are a group of people living with dementia advocating for policy change and social justice.

I also found Dementia Alliance International and joined them, and am now an active board member.

DAI was exactly what I was looking for. They are global, and they are the voice OF people with dementia. Kate Swaffer spoke at the WHO First Ministerial Conference on Dementia in March 2015, and placed human rights and disability rights onto the global stage. Many people with dementia are now actively working individually and collectively towards claiming them!

I have attended meetings in Geneva twice this year, once to speak at the opening of the 17th session on the Charter of Rights for People with Disabilities (CRPD) representing DAI. The next time as part of the civil delegation when Canada presented on their human rights issues for people with dementia. In their report back to Canada dementia was mentioned, which I believe was the first time that this is ever happened. This has given me further drive to stand up for people’s rights from a human right’s perspective.

We know the people with dementia are stigmatized in many different ways so they hide away to avoid that stigma. If we look back to the 60s people were with dementia were told to go home and that is what they did.

Let’s jump ahead to round the year 2000 when my mother was diagnosed with dementia; she too was advised to go home get your affairs in order. My mother hid her diagnosis for many years but at this time they were still very little they could do for people with dementia. In the end my mother ended up in a nursing home because of her diagnosis she was most times left in a chair and wasn’t included in anything.

But it is still happening today!

I too was given the same advice but because of my intelligence and my nursing background I refused to take it. Kate Swaffer has termed this Prescribed Disengagement®; it happened to her, and it is still happening to people being diagnosed today.

I’m going to stand up and fight this because there’s has to be a better way. When we consider the continuing breach of human rights for people with dementia, there is no other choice. For example, in Canada one of the provinces has decided and is taking it to the supreme justice in the province, to have it made into law that people with dementia cannot make decisions on their own due to their disease. This is wrong, as it contravenes our human rights; people with dementia do not instantly lose capacity to make decisions for themselves at the time of diagnosis. It is a violation of the human rights and the CRPD. So we are fighting this in Canada and will have to wait to see what happens because if they do make it a law then we will be going to court and fighting this as a human rights violation.

In the early stages of dementia we are able to do things, but we need support for the disabilities caused by the symptoms of dementia to find different ways to support us to live with dementia, not only to die from it.

We need supports that currently are not offered. Things are finally starting to change for people with dementia around the world you may ask why this is happening. This is happening because of people like the late Dr Richard Taylor and DAI’s Chair Kate Swaffer and many other persons living with dementia standing up to the social norms and challenging them. I hope by being here today I have been able to instill a little bit of knowledge on you about what people with dementia are going through. If you have any questions I am more than willing to answer them, if we have no time then please come up to me during one of our breaks I am open to talking to anybody about this disease process.

In closing I want to give you an analogy received from Brenda Avadian of The Caregiver’s Voice. She said as one [Phyllis Fehr] who lives with a non-communicable disease –dementia –

We’re doing all we can to raise awareness worldwide and make dementia “communicable” by finding strength in working together and sharing our stories for advocacy.

This struck a chord with me. People are still not made aware of it and I fully believe that the more it is spoken about, and the more we fight for our human rights, the better off people living with dementia will be. Thank you.

DAI’s Chair & CEO Kate Swaffer will be following up this as she has been invited to attend the Global NCD Alliance Forum on 9-11th December in Sharjah UAE, “Stepping up the pace on NCDs; making 2018 count.” where the Advocacy Agenda of People living with NCDs will be launched and where the NCD Alliance will be mobilising NCD civil society community and bringing together approximately 300 people to discuss  I am looking forward to seeing you in Sharjah, UAE.

Dementia: the impact on families

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

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

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

Grandchildren and Dementia

By Davida Sassler © 2017

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

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

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

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

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

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

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

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

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

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

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

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

Thank you Davida for sharing your story.

DAI attends mhGAP Forum 2017

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
  • Increase independence
  • 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 communitybased rehabilitation is to help people with disAbilities, by:

  • Establishing communitybasedprograms 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.

  • Timely Diagnosis
  • 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:

  1. To what extent are your dementia policies based on human rights?
  2. How closely do you work with other disAbility organisations in your country or region?
  3. Do you know how they have used CRPD?
  4. Will you join them to ensure that people with dementia are included?
  5. How are we going to measure 75% of countries have implemented the GDAP by 2025?

Thank you.”

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

“Can You Hear Me Now?” by Carole Mullikan

We are honoured to have an article written by dementia advocate and pioneer, Carole Mullikan. Thank you Carole, for sharing your story, and for living so well since her diagnosis in 1995, by role modelling to us all by focusing on what she can still do, and that for many of us, it is possible.

Can You Hear Me Now?

“Not so long ago a man in spectacles paced everywhere testing his phone in a Verizon commercial.

“Can you hear me now? Can you hear me now? Can you hear me now?”

As a first-year teacher, that was a question I often asked myself when in front of a noisy bunch of teenagers. Over time, I learned how to quiet and focus teenagers in a classroom. Yet sometimes I still needed to ask the very back row,

“Can you hear me now?”

When I began making luncheon presentations in ballrooms at state teachers’ conferences, the question arose again. Sometimes microphones are forgotten. Sometimes they malfunction, necessitating greater lung power. Other times they must be tested and adjusted.

“Can you hear me now?”

At one national conference, the microphone was working just fine, but as I took the podium, I glanced up, seeing the massive, multi-layered crystal chandelier above. Good grief! I thought to myself, what could I possibly have to say that was worthy of such splendor? But being a seasoned speaker, I persisted.

These days, I no longer speak in classrooms or at conferences. Most often I speak to just one or a few individuals. That should seem easy, but having been diagnosed with dementia, “Can you hear me now?” is still an issue. The stigma attached to dementia causes others to listen through a perceptual filter telling them the person with dementia is often confused. What he says may be wrong. She may not have her facts straight. He might be dwelling in the past or experiencing delusions. What a person with dementia says cannot be trusted. Even when I am certain of my facts and speak with authority, I question that they can hear me through the diagnosis of dementia. Too often I fall silent.

Hear me now, please!

Being automatically deprived of my credibility hurts!

Copyright: Carole Mullikan 2017

More about Carole Mulliken: Carole is a DAI member and a member on our recently reinstated DAI Action Group, about to commence moderating a Discussion forum currenty being set up for members. She is also a founding board member of the Dementia Advocacy and Support Network International (DASNI), which was the first international online support group for people of dementia. Unlike DAI, membership was not exclusive to people with dementia.

With a diagnosis of multi infarct dementia, obviously now well over twenty years ago, Carole regards dementia advocacy as a second, unpaid career and herself a veteran of the dementia wars. She lives near Saint Louis, MO, and those of us at DAI salute her for being one of the shining lights who led the way for the rest of us.

Carole worked as an educator, a school counselor, a suicide crisis interventionist, an adjunct professor of composition, an educational consultant for a division of the U.S. Department of Education, and a freelance writer. She wrote and published a monthly online newsletter for an animal shelter and maintained its website. She has published freelance feature articles for print publications and for several websites.  Lisa Genova, Ph.D., author of Still Alice, recognizes DASNI and Carole Mulliken by name as contributing to her own understanding of the lived experience of dementia.

And Then I Looked Up Dementia – Women Speak Out

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

To find out more visit https://www.gadaalliance.org/women

UN Special Rapporteur: The Right to Health


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

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

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

In the Introduction of this report, it states:

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

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

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

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

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

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

Register for the DAI #WAM2017 event: “Voices of dementia”

Whilst DAI has held a number of workshops as part of the Alzheimer’s Disease International or Regional conferences, including in Melbourne, Budapest, New Zealand and Japan, we have not yet held our own DAI conference, seminar or event where people can attend in person.

This year, we’ve worked hard to achieve hosting a DAI event, but also have been lucky to be supported by BlueCare: Live life your way to enable us to co-host our first event during World Alzheimer’s Month with the Dementia Awareness Advocacy Team in Brisbane, to be held on September 20, 2017.

We will also hold this as an online webinar at the same time, so that others can join us, and this event will replace our usual “A Meeting Of The Minds” Webinar in September. It will therefore be in two times zones, on September 19 & 20, 2017, but is still only one event.

Let’s hope this becomes and annual event, working together with local or national Dementia Advisory or Working Groups or Teams of people with  dementia and their families, towards ensuring a better world and a stronger voice for all people impacted by dementia.

You can register here…

 

We apologise to those who live in a time zone where for you to attend it will be extremely inconvenient, but we do hope to record the sessions so they will be avialable to watch afterwards on our YouTube channel.

 

 

 

DAI granted NGO status at the COSP

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:
 
1. AbleThrive
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.

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

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

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

Abstract

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

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

INTRODUCTION

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

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

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

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

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

THE IMPORTANCE OF THIS CONVENTION

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

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

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

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

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

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

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

CONVENTION PRINCIPLES

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

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

MAIN ARTICLES OF THE CONVENTION

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

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

HOLDING GOVERNMENTS ACCOUNTABLE

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

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

Ratifying States accept a number of general obligations to:

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

MONITORING

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

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

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

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

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

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

Optional Protocol

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

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

AN AGENDA FOR CHANGE

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

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

1. Develop a National Disability Strategy

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

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

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

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

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

2. Support People with Disabilities and their Organisations

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

3. Promote Access to Mainstream Services

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

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

4. Improve Services for People with Disabilities

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

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

5. Develop Appropriate Quality Assurance Processes

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

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

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

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

6. Develop a National Training Strategy

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

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

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

Community-Based Rehabilitation

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

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

7. Public Awareness

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

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

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

8. Think Regionally

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

CONCLUSION: CONFRONTING THE ECONOMIC CRISIS

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

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

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

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

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

* 173 countries have now ratified the CRPD

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

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