Tag Archives: Copyright 2017

REHABILITATION 2030- A Call For Action # 1

 

On Monday and Tuesday of this week, I attended the WHO meeting in Geneva, REHABILITATION 2030: a call to actionDownload the full call to action here: REHABILITATION 2030- A Call For Action, and follow this link to download a number of other background papers if you are interested.

Introduction

This meeting was the first of its kind focused on rehabilitation, similar to the First Ministerial Conference on Dementia held in March 2015, where I placed rehabilitation for dementia onto the global stage in my keynote speech. Everyone, including people with dementia have the right to rehabilitation. There were well over 200 people in attendance in the Executive Board room, representing organisations and almost all types or causes of disabilities from all around the world. I’d guess it was the first time dementia has been represented at a special rehabilitation event like this.

After introductions on Day 1 by Dr Krug on the importance of rehabilitation for all, he stated that we all must bring this topic into the political arena, as without change in policy, little will happen. He also talked briefly of the need to fully integrate rehabilitation into health care systems globally.

Following this, we watched a short film, with a very clear and strong message that;

“Everyone must be able to access available, and affordable rehabilitation services.”

I have many pages of notes from the two days, but feel rather than overload (or bore) you, there will be a s series of blogs covering the two day meeting over the next few weeks, commencing with here with Blog #1.

Early on Day 1, we heard three testimonies from people living with disabilities, who, without rehabilitation, would not be living productive and meaningful lives today. These are the notes I took from these powerful testimonies:

Three personal testimonies:

1. Dr Rita Sadana 

Rita works at the WHO, discussed why rehabilitation is essential. Cycling was a passion and also how she met her husband – but an accident with a car caused her severe spinal injuries, paralysed her, and caused many other medical problems. Basically, she said, she has been reconstructed, and is lucky to be back at work.

She says to people who tell her she is a miracle, but that it is not a miracle, but mostly due to full and authentic package of rehabilitation!

Family and friends and colleagues also important, but motivation and never give up attitude is what has helped as much as rehab. The result was a ‘new me’ but allowing her to live beyond her paralysis and other critical injuries – without it, she would still be like a robot, unable to walk properly, work, function and have a good life. She chose a holistic path for pain, instead of the addictive drugs; rehab has a huge impact, with immense value. Finally, she stated:

“Rehabilitation gave me a second life worth living.”

2. Dr Gopal Mitra

Works at UNICEF as a program specialist. He became blind in his late 20’s due to an explosion – rehabilitated, but still a very difficult journey. From a small lower SES small town in India, he says he was luckier than many other Indians, which was simply due to care and services being arranged by himself, not the health system. Support of family and friends was CRUCIAL, and even medical doctors do not know what is available; there was a lot os trial and error, and he found out through others living with disabilities, not the health system what was available. It was the only way he achieved, as there are no services. On top of that, all services in India are urban centric, even though most people live in rural communities, not the cities. Also, the quality of services was poor, e.g. given a shorter cane, simply because one for someone tall was not available – causing the chronic backache!

He was told “To forget everything as you are blind now”, and you can do things like basket weaving instead of living your life!! He was very angry and said he wanted to tell them to shove the basket… He was also told it would be 5 years before services, just in case his sight came back – he took out his eye and said, do you think this will grow back!

Things must change – his own experiences of rehabilitation and services was self sought and fought for, and costly. Most with disabilities live in poverty – he was lucky he had funds, and some support from his employer. System structures must be set up to make it affordable for all. Finally, he said, which I thought was the quote for the two days:

“Leaving no one behind, does not mean, leaving almost no one behind!”

3. Ms Cheat Sohka

She is the Executive Director of the Association of Spinal cord injury in Cambodia, which she established in 2012. Ms Sohka became a paraplegic during the civil war in Cambodia; at that time, no rehabilitation, no medical support, and the situation was getting much worse. Her family took her to the rehabilitation camp, and pushed hard for a humanitarian pathway.

She needed her family to earn money to support her rehabilitation and the equipment required, of which none was provided by health system in Cambodia. Finally, she said:

“Rehabilitation taught me to see a future, and that it was possible to continue to live and contribute to society.”

 

These were indeed three very powerful testimonies, and I have little doubt there will be many people diagnosed with dementia who will, as I did, relate to them. It has almost certainly been the self prescribed rehabilitation and lifestyle changes, that have allowed me to slow the progression of my own dementia.

Representing DAI

I was there in my capacity as one of eight co-founders, Chair and CEO of DAI, representing all members of Dementia Alliance International, and in reality, all people with dementia globally. There was no opportunity at the meeting to make a formal statement, although we had the opportunity to respond to three questions prior to the event. You can see our statement here:

As this is Part 1 of a blog series about rehabilitation and dementia, I will mention that there was however, only one opportunity to ask a question which was on Day 2, so I put the DAI sign up and was invited to speak. My question to the panel was this:

“How well will dementia and rehabilitation be focused on and how will we ensure people with dementia receive rehabilitation?”

Dr Shakhar Saxena, the Director of the Department of Mental Health and Substance Abuse at the WHO, answered very positively. He stated that we will all need to wait until the Global Action Plan for Dementia is accepted, but that if it is accepted (we all expect it to be), then he is confident it will be taken seriously. He said the WHO want to start a public campaign to remove the misconceptions around dementia [as DAI has begun], but additionally, the WHO will be collecting information from countries to find out what they are doing, and use the Global Dementia Observatory to pull together the data. Dr Sazena stated clearly the WHO will be relying on DAI to assist with this, as we are proving it can be done, and rehabilitation is very useful to enable us to live good lives for longer, as well as contribute significantly to society.

Marc Wortmann, CEO of our close partners, Alzheimer’s Disease International, sitting next to me, and I were both very happy with this response.

It is obvious, when the conclusion of the Organisation for Economic Cooperation and Development[i], based on an exhaustive study of the world’s 38 richest countries is that “Dementia receives the worst care in the developed world” that this is unacceptable.

It now seems clear that rehabilitation and proactive disability support for all newly diagnosed people with dementia has the greatest potential to change that. DAI is showing this by example of its members are living meaningful and significantly productive lives. There is also much emerging evidence showing it is possible to slow down and even reverse cognitive decline in some types of dementia, when diagnosed in the very early stages or at the pre dementia stage. We need to embrace this emerging evidence, or the negative impact to dementia care and our prognosis will be impacted greatly if we don’t.

It is also why we must continue to push for a human rights based approach in aged and dementia care, that includes rehabilitation and active disability support in the same way people would receive after a stroke or other brain injury. This will move us towards improving quality of life and well being for everyone including our families and care partners who support us, not just those with dementia or requiring aged care services.

[i] OECD (2015) Dementia: the OECD Response. Paris: Organisation for Economic Cooperation and Development.

 

A blog for our UK members

Over the last few weeks and months, I have been watching with interest various matters in the UK, things happening to people with dementia there, that are a lot more than unhelpful. Wendy Mitchell has written a number of excellent blogs on her experiences of being denied Personal Independence Payments (PIP), and I know Chris Roberts and have no doubt many others have also recently had significant issues around similar things. It seems they want us to live as well and as independently as humanly possible, but then when we do, we are not believed we have dementia, and for many, funding is cut, the very thing that is needed to maintain this independence.

Thanks to the Internet and social media, I often connect with professionals who may be able to offer support, and have connected with Rosalind Hughes via Twitter. Obviously, DAI does not endorse people or organisations, but if we feel sharing the services of a particular individual or organisation to our members might be of value, we do so. This blog is one of those times.

Rosalind Hughes is a solicitor and Head of Just Caring Legal. She has worked in the legal profession since 1995 and has become particularly interested in adult social care over the years due to her work at the Citizen’s Advice Bureau.

Having met families who were wrongly paying for substantial care home bills, who are experiencing significant healthcare issues such as Alzheimer’s, or other forms of dementia, cancer and Parkinson’s to name but a few, she felt driven to set up her own specialist firm dedicated to challenging these cases. Rosalind has a great deal of empathy with families who have been wrongly denied access to NHS Continuing Healthcare and seeks refunds of care fees and offers other vital services to complement her work to provide a holistic service. We do not know her fees, but her guest blog below may be able to support some members who run into issues such as the ones Wendy Mitchell is facing.

Possible ways of funding care needs when a family member has Dementia

By Rosalind Hughes, Solicitor and Head of Just Caring Legal

“Recognising that the care needs of a family member with dementia are more than family and friends alone can manage can be hard. Finding and affording a way of meeting those needs so they can continue to live as full a life as possible can be just as tough.

Many people don’t realise that there is full NHS funding available for care and nursing home fees where an adult needs ongoing support outside hospital as a result of disability, accident or illness. This funding, called NHS Continuing Healthcare is not financially means-tested and is managed and distributed locally by NHS Clinical Commissioning Groups (CCGs).

However, access to NHS Continuing Healthcare funding can be a particular struggle for people suffering from dementia. Some are lucky enough to be found eligible, while others with similar levels of need have to fund their own care or rely on local authority funding, which is means-tested and increasingly relies on having to be “topped up” and paid for by by third-parties, sometimes to the tune of hundreds of pounds a week.

Why this lottery? It is mainly because the criteria for assessing NHS Continuing Healthcare eligibility, which hinges on the person having care needs arising from a “primary health need”, leaves too much room for interpretation. While the National Framework for NHS Continuing Healthcare and NHS funded nursing care has been in place since 2007 to give guidance to CCGs, in reality there is very little consistency in decision-making. Also, the complexity means many people struggle to understand (and are often not fully informed) whether their loved ones are entitled to NHS Continuing Healthcare.

A recent report from the Continuing Healthcare Alliance (which counts Dementia UK, the Alzheimer’s Society and Age UK among its members) concluded that the NHS Continuing Healthcare system is failing people across the country. Entitled Continuing to Care?, the report describes how many people are being unfairly denied this desperately needed support. And how even those who are granted NHS Continuing Healthcare funding are often given inadequate care packages that don’t meet their needs.

The National Framework makes clear that eligibility for NHS CHC is not dependent on a particular disease, diagnosis or condition. It is based purely on establishing a ‘primary health need’ and a full assessment of the nature, complexity, intensity and unpredictability of someone’s overall care needs.

Yet the Continuing Healthcare Alliance found that people with Dementia are regularly incorrectly denied NHS Continuing Healthcare on the grounds that their care needs are a “routine” part of their condition and its progression and therefore outside the scope of NHS Continuing Healthcare. This can be incredibly distressing and frustrating for families and loved ones who believe that their loved ones actually do meet the eligibility criteria.

The National Framework also makes it clear that just because needs are being ‘well-managed,’ this does not mean they are no longer a factor and should not be marginalised. Nevertheless, the Continuing Healthcare Alliance reports people with dementia having their NHS Continuing Healthcare withdrawn because their condition has “improved or stabilised”, even where this is a reversible phenomenon purely down to the skilled interventions of trained carers.

The report concludes that many decisions on NHS Continuing Healthcare are budget-led rather than needs-based and person-centred as stipulated by the National Framework. There can be conflicts of interest within CCGs, where the person in charge of assessments is also the one charged with hitting savings targets on NHS Continuing Healthcare.

This can make applying for NHS CHC a highly distressing and frustrating experience. On the other hand, it also means in many cases, decisions can be challenged on the basis that the National Framework has not been properly followed. The Times Newspaper recently ran the story of how Vicki Keiller, a 90-year-old woman with dementia, paid nearly £100,000 in care fees when she should have been receiving NHS Continuing Healthcare. She got her money back – but only after a two-year struggle between her determined son Don, a university lecturer, and the local CCG. Success stories are possible with a bit of perseverance and first-class knowledge of the National guidance and benchmark cases such as Coughlan.

So, what advice do we have for people who believe that a loved one with Dementia should be receiving NHS Continuing Healthcare? In a nutshell, it is this.

Don’t believe everything you are told 

You may hear that your loved one “won’t be eligible” for NHS CHC because they are not “at death’s door” or “don’t have to be PEG-fed” – or that someone at the CCG has already carried out an assessment and they don’t qualify. But there are rules about the assessment process which the NHS has to follow, and these include carrying out an initial checklist to decide if an NHS CHC assessment is appropriate, when asked to by the family. If they do not comply you can challenge this.

Keep meticulous dated records of care needs 

When challenging an NHS CHC decision, evidence of care needs is crucial and the family have a unique perspective. Care home or hospital/medical records sometimes omit vital relevant information so check them regularly to make sure they are accurate, complete and up to date. Keep your own detailed journal charting your loved one’s condition and needs, especially (not solely) in the 12 vital NHS CHC “domains” – a copy of these can be downloaded here. Cross reference this with the care records to ensure they present a true and accurate picture. If they don’t, challenge and question those in charge of the care.

Be persistent

Unfortunately, it is regularly reported that CCGs may be making decisions on NHS CHC eligibility based on budgets rather than purely on care needs. It is often only those, like Don, who refuse to give up, that succeed. If local disputes resolution fails you can take the case to an Independent Review Panel, and if this fails, to the Parliamentary Health Service Ombudsman. At Just Caring Legal, I am regularly guiding clients through this complex process and I feel passionate about making a difference and seeking to secure positive outcomes for vulnerable elderly clients.”

Thank you Rosalind.

 

Mary’s 4th Blog from the UN Social Forum

screen-shot-2016-10-27-at-6-39-56-amFollowing on from our first blog, welcoming you to the new year, we begin the years blog series with our first one being the last account from Mary Radnofsky of the Social Forum she and Peter Mittler attended last year, representing DAI and all people with dementia.

Thanks again to them both for their excellent work, and special thanks to Mary for writing this particular series of blogs. It is quite a long read, so grab a pot of tea or coffee, and sit yourself down in an arm chair for a very interesting read.

Mary’s 4th Blog from the UN Human Rights Council – Social Forum

10th Anniversary of the Convention on the Rights of Persons with Disabilities (CRPD), October 3-5, 2016 (Geneva, Switzerland)

You know that family reunions are often fraught with peril when your cousin the hunter is seated next to your aunt the vegetarian, or when your nephew in med school talks about his latest dissection over turkey & gravy. Sometimes the things people say make us uncomfortable at the dinner table, and when it’s family, we often let them know – either with a disapproving glare or an interruption, sometimes a raised voice or an abrupt departure. Rarely does it come to slinging a handful of mashed potatoes across the room. (In fact, no food fights were allowed when I was growing up.)

So at the United Nations, when people with common problems but multiple perspectives get together to discuss how best to solve them, I was very comforted to see that everyone behaved quite respectfully.­ For the most part, everyone had to hear each other out if they wanted a seat at the table.

I saw only one exception, and it was on the last day of the forum. An audience member who’d been given two minutes to comment was rambling on through the five-minute mark with no intervention by the moderator. Another lady in the audience was squirming in her chair, looking around, raising the palms of her hands, then looking at me, as if appealing to me to do something. I whispered, “It’s ok; the moderator will handle it.” She shook her head no, slapped her knees, and loudly said, “But she’s not doing a thing!”

I was shocked by the breach in protocol, not having seen anything like it in over 20 hours of meetings. So I tried to calm her, and again whispered, though more firmly, “The moderator will take care of it.” She whipped her head around to search the audience and roll her eyes, then made an audible protest about how much time was being used, and how unfair it was. She’d metaphorically thrown a handful of mashed potatoes against the wall. But none of it stuck. No one reacted. I sat very still, facing forward, with my eyes focused on the panel of experts, also ignoring the outburst. But I expected a gravy boat to come flying from the opposite corner at any second.

About a minute later, the moderator thanked the speaker for her comments, and gave the floor to the next person. This is a civilized place, and moderators understand that sometimes it’s more important to allow a vague, meandering voice to be heard, than it is to respect time limits.

There may be criticism, avoidance, and disagreement, but no food fights at the UN. Enjoy.

Tuesday, October 4, 2016 Making Development Inclusive.

Moderator: Ms. Lidia Pretorious, Chief Director, Rights of Persons with Disabilities, Department of Social Development of South Africa

Ms. Judith E. Heumann, Special Advisor for International Disability Rights of the U.S. Department of State

Mr. Michael Njenga, Board Member, Pan African Network of Persons with Psychosocial Disabilities, stated that the purely medical model for assessment is not effective. There must be a needs-based social model.

Ms. Priscile Geiser, Chair, International Disability and Development Consortium IDDC

Ms. Rosangela Berman-Bieler, Senior Advisor on Children with Disability, UNICEF

(see the panel on UN WebTV: of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date)

Interactive Dialogue

Gian-Pierro Griffo, from Italy, spoke about the UN Sustainable Development Goals (SDGs), and that people with disabilities need to be consulted on the decisions and events that affect their lives. People are the actors in their own country in working for development. They have the capacity to apply the Convention, so their knowledge and competence need to be included.

Peter Mittler stated that disability organizations are dissatisfied with the implementation of the Convention, and with the lack of accountability of countries for CRPD. (Slide the Time Index to 1:02 of http://webtv.un.org/search/making-development-inclusive-social-forum-2016/5154707043001?term=social%20forum&languages=&sort=date.) Peter wants to ensure that people with disabilities are co-partners on governmental committees for implementation, as the Convention requires, and he wants disaggregated statistics about children with disabilities in schools.

Tuesday, October 4, 2016 Side Event: Underrepresented Groups of Persons with Disabilities.

Co-organised by the African Disability Forum (ADF), Pacific Disability Forum (PDF), World Federation of the Deafblind, World Federation of the Deaf, International Federation for Spina Bifida and Hydrocephaly, International Federation of Hard of Hearing People, co-sponsored by the Permanent Missions of (TBC), with support from the International Disability Alliance. (Transcription available at https://synchshare.de/ida-cassandra)

Peter was given a generous amount of time to speak. Part of what he said was on quality of care, “We have evidence from the Organisation for Economic Co-operation and Development (OECD) that dementia gets the worst care in the developed world and we know it is unsatisfactory in the less-developed world. Many don’t get a diagnosis. Because young people are leaving the villages, old people are left isolated.

Peter also spoke on the successes of DAI: “We have persuaded the Alzheimer’s Disease International, which is the main international organization for people with dementia, with 85 national societies, to support our policies. So now they have a human rights policy, which includes full access to the CRPD and other conventions.”

Peter was critical of progress saying, “As far as we can see from CRPD reports, not a single member state has included people with dementia in their implementation of the convention; we ask why not, because we are fully entitled to it in Article one. That is indisputable, yet we are absent.” He added that, “About 30 countries have launched dementia strategies. They’re quite good dementia strategies; they contain the right ingredients and they may say nice words about the CRPD, but they don’t use the CRPD which they have ratified in creating dementia strategies.”

Peter also discussed the rights of children: “I’m sorry that no one in this meeting has mentioned that of the 57 million children out of school, more than a third are children with disabilities… I’ve been trying to draw attention to this for 15 to 20 years, ever since 1990 when the UN promulgated Education for All… We have a promise of a report from UNICEF institute of statistics in Montreal, with disability-disaggregated data for the first year of the SDGs but it’s in the coffin marked ‘when data become available.’ There is only some focus on children already in schools. And the UNESCO monitoring reports have said that, year after year after year. Some of us have protested about it; nothing has happened.”

I then spoke about the need for “Rehabilitative Education” (academic or skills learning) for people with dementia: (Transcription available at https://synchshare.de/ida-cassandra)

“My name is Mary Radnofsky; I’m from Dementia Alliance International. My comment is about lifelong learning. I’m interested in knowing if “Rehabilitative Education” is considered part of this category of inclusive learning. When people with dementia are diagnosed, it is assumed that they can no longer learn and this is, of course, a myth that needs to be broken; it is entirely false.”

I said that “Rehabilitative Education” should apply to people with dementia, since cognitive education is already guaranteed for people with disabilities to be lifelong learners. This could be another tool for us in the legitimate argument for RE-teaching us things that we lose due to degenerative brain diseases. Despite myths that we can no longer learn, the DAI Chair is getting her doctorate, I explained. I strongly advocate for anyone with dementia to be able to take courses in finance, formal logic, or math, for example, when we start to lose the ability to balance our checkbook or manage finances. And I declared that this “Rehabilitative Education” should be funded, just as any other rehabilitative speech or physical therapy.

Tuesday, October 4, 2016 Strengthening Accountability

Moderator: Mr. Stefan Trömel, Senior Disability Specialist, International Labor Organization (ILO

Ms. Malena Pineda Ángeles, Chief of program persons with disabilities, National Human Rights Institution of Peru

Mr. Alastair McEwin, Commissioner, Human Rights Commission, Australia, wants to eliminate discrimination against people with disabilities, so they have equal rights before the law, and promote principle of human rights the same as with the wider community. He says a government should be able to set up standards in any issue, to give community guidance, to be sure they comply with their Disability Discrimination Act. But he also said it takes time and resources to maintain and monitor changes.

Ms. Godliver Omondi, Senator from Kenya

Mr. Geir Jensen, President of the World Federation of the Deaf-Blind – made a statement read by assistant. He spoke of capacity-building by the International Disability Alliance (IDA) which has provided technical support to advocates from over 90 countries in 62 national overseas workshops. People became engaged with treaty bodies. Specific and mainstream monitoring processes were managed. Increased use of these mechanisms reinforced UN mechanisms too. As they are not a homogeneous group, he said, it’s a challenge to include all disabilities; there is a lack of reasonable accommodations , and extensive training is still needed for assuring the CRPD perspective is recognized.

Peter Mittler criticized the CRPD regarding accountability, to hold member states responsible for including a person with disabilities (Go to Time Index 59:45 at http://webtv.un.org/search/strengthening-accountability-social-forum-2016/5155220168001?term=social%20forum&languages=&sort=date.) Peter says that member states are not complying with implementation of CRPD Article 4, and that pressure should be put on them by the Office of the United Nations High Commissioner for Human Rights (OHCHR) as a direct outcome of the Social Forum.

Wednesday, October 5, 2016

Peter and Mary met in the café with Zhijun from the Peoples Republic of China, who was in Geneva studying about human rights, and asked about people with dementia in China; he said the challenges they still have, are for families to deal with stigma, hidden [harmful] practices, and basic human rights issues.

Peter and Mary also met in the café with Catalina Devandas (from Costa Rica), UN Special Rapporteur on the Rights of Persons with Disabilities, who asked us to suggest ways in which Member States can provide services for people with dementia for her upcoming report. Basically, she says, it is be the obligation of the state to provide support from a human rights approach. We told her about some of the DAI documents we’re working on, (e.g. the report on accommodating people with dementia at conferences, and creating dementia-friendly communities) and that we needed to get them ok’d by the DAI president to send them, but that we would get a summary to Catalina by the end of October, which she said would be fine, since her report would be published in March 2017.

Wednesday, October 5, 2016 Realizing the Human Rights of Persons with Disabilities

Moderator: Mr. Vladimir Cuk, Executive Director, IDA.

Ms. Theresia Degener, vice-chair of the CRPD Committee insightfully and clearly-explained about the implementation of the CRPD and monitoring of the practices in the 30 first countries that have been reviewed.

Wednesday, October 5, 2016

Implementation of Agenda 2030 under the CRPD: The Future We Want

Moderator: Bat-Erdene Ayush, Chief, Right to Development, OHCHR Academia

Ms. Abia Akram, CEO National Forum of Women with Disabilities of Pakistan

H.E. Ms. María Fernanda Espinosa Garcés, Ambassador Extraordinary and Plenipotentiary, Permanent Representative of Ecuador to the United Nations in Geneva

Ms. Eppu Mikkonen-Jeanneret, Senior Adviser for Global Social Policy, Ministry for Foreign Affairs of Finland

Ms. Sanja Tarczay, President of the European Deaf-blind Union

Watch on UN WebTV here…  

Interactive DialogueMary suggested the creation of a CRPD resource database: (Slide the Time Index to 35:35 at http://webtv.un.org/search/implementation-of-agenda-2030-under-the-crpd-contd-social-forum-2016/5157102747001?term=social%20forum.) Mary said, “In the three days of this forum, I’ve heard people speak of some wonderful programs they have created or observed in their countries or communities…”

“I suggest that the United Nations Human Rights Commission create a Library of Best Practices, with Primary Resources used in each country that has ratified the CRPD, to improve the conditions of life for people with disabilities. These documents would not be reports by officials, but rather they would be brochures, workbooks, educational booklets, handbooks to help people in airports, computer programs to assist people, phone Apps tied to the CRPD, etc.”

Whatever we can do to spread knowledge, will help people with dementia to make better decisions about what they want and need, to fulfill their human rights.

Closure of the Social Forum was celebrated in a “Family Photo” by a few of us at the end of the meeting. (I’m not in this one because I was taking it!) You get the idea: the world’s family at the annual reunion, each with a special dessert to offer.

Mm-mm! Good!

Mary Radnofsky PhD