Nilesh Singit
Accessibility Consultant / Equality Trainer / UNCRPD Expert /Disability Researcher

By: Nilesh Singit | September 05, 2016

By Asif Kalam

What might it mean for people who live with mental illnesses to be given control over how they will receive medical care? The Rajya Sabha recently passed the Mental Health Care Bill, 2013, which aims to safeguard the rights of people with mental illnesses. It prioritises choices made by patients, and replaces the archaic Mental Health Act, 1987. One of the Bill’s significant new provisions is the Advance Directive, which allows persons living with mental illness to create a document with instructions on how they must be treated and cared for in the event that they are incapacitated by an episode of illness.

The Bill also allows individuals to nominate a representative to take treatment decisions on their behalf if required. Mental Health Review Boards (MHRBs), quasi-judicial bodies that will be set up in every district, will be entrusted with the certification, custody, review, and arbitration of Advance Directives.

Representational image. AFP

"Part of the terror of mental illness is losing control over your mind, and knowing that you will probably lose even more as you grow older,” says Sneha, a 30-year-old writer based in Bangalore, who is bipolar. “To be able to write advance instructions for one’s treatment helps give back some of that control," she adds, when asked about what it might mean for her to be able to make these decisions for oneself. Manisha*, a 26-year-old writer who lives with borderline personality disorder, seems to echo this when she says, “Having a treatment plan in place — even if it’s as simple as a document stating whom to call, what I do not consent to under any circumstances, whom to treat as my next of kin, what my psychiatric and psychopharmacological history is, who my doctors are — would be a level of visibility and explicitness I’d be grateful for.”

Both Sneha and Manisha say that they are willing to go through the process of paperwork to get these Advance Directive documents in place. This is despite how long the process sounds — they both insist that it is important that the directive allows them to maintain control over their treatment. Manisha says she would do it despite not being clear on how the logistics of such a plan would come together. Sneha also mentions that she is willing to and will need to keep updating it, based on the new developments that take place in her illness, its treatment, and her own world view.

Stakeholders we spoke to were in broad agreement that the Bill seems to be a step forward. It has finally decriminalised attempts to commit suicide, and mandates that governments provide affordable, quality, geographically accessible mental healthcare. Vandana Gopikumar, co-founder of Banyan, a mental health NGO for women, sounded hopeful when she said, “I’m happy that the Bill takes into account the large service gap and mandates access to care as a right. This will address the needs of many who live in low resource contexts, who today have to travel long distances to access care, or often forgo treatment in the absence of a functional health and social care system.”

But while the Advance Directive is seen as greatly significant in recognising the autonomy of people for their treatment and care, some policy experts and rights groups are sceptical. Section 11 of the Bill allows doctors and relatives of a person to approach the Mental Health Review Board (MHRB) to revoke or modify the Advance Directive under certain grounds.

Jayna Kothari, lawyer and co-founder of the Centre for Law and Policy Research, argues that the power of Advance Directive is seriously undermined by Section 11. She says, "On one hand the whole provision is to give people with mental illness the right to autonomy and to recognise that they have capacity to take decisions for their own lives. If those decisions that they have made for themselves can be challenged, then you are basically saying that you can make a decision that we can revoke because we know better.”

The grounds on which other parties can challenge an Advance Directive include considerations of whether the person was well-informed, and had the capacity to take the decision. Manisha says, “No matter how distressed or incapacitated I might be at a particular time, I — and the people I trust — know what’s likely to help me and what’s definitely likely to make it worse.”
Kothari argues that in the case of patients who require treatment for other non-mental-health related illnesses, there is no such provision to challenge their decisions, so why is there a lack of patient autonomy in mental health care? “You don’t even raise these grounds for people in non-mental-health situations,” she says.

When asked how she would react if she learnt that her Advance Directive had been overturned, Manisha says, “I'd be unsurprised but bitterly angry. It's a question of autonomy and self-determination. In some cases this sense of autonomy and self-determination is hard-won. I'd be shattered to realise that having a mental illness somehow translates to my ownership of my life not mattering.”

*Name changed on request.

The Ladies Finger is a leading online feminist magazine.

Category: Amita Dhanda 

Tags: UNCRPD 

By: Nilesh Singit | September 05, 2016

Gargi Gupta

In a society where the dice is heavily loaded against them, the differently-abled find that the insensitivity and ignorance they battle daily get amplified when it comes to romance and marriage. Gargi Gupta gets a sense of the challenges they face and how they cope

Preeti Monga was just six years old when she lost her vision. What followed next is a story more or less common to most differently-abled people in India – or used to be back in the 1960s, when Monga was growing up in Amritsar. She was chucked out of school in class VIII, and married off at 23 – "'Arrey, hamare baad koi toh ho isko dekhne wala (There should at least be someone to look after her after us),' my parents thought," says Monga.

Except that it didn't happen that way; her husband turned out to be abusive and a compulsive liar. That would have stumped many a woman, especially a visually-challenged one with two children. Not Monga. She got back to school, sat for the class X board exams via open school, learnt aerobics and started her own classes. Then, after becoming economically self-reliant, she filed for a divorce. "But I didn't want to spend my life alone. I wanted romance, I wanted a partner," she says with disarming candour. And so, she proposed to a colleague she liked. Monga, at the time, was sales manager with a pickle brand. "He was ten years younger and said no. So I asked him again and again every day for 22 days until he said yes," she laughs. "When you want something, you should be ready to go for it. There's nothing to feel shy about."

Preeti and Ashwini completed two decades of marriage this September.

It's a heart-warming story, but Ashwini Monga is an exception in a country where the differently-abled battle staggering degrees of insensitivity and ignorance, attitudes that get amplified manifold when they seek a partner, someone to fall in love with, or marry.

More hurdles for women

Sweta Mantrii, a 29-year old freelance writer, editor and documentary filmmaker in Pune who has spina bifida, a condition where the vertebral column bones do not cover the spinal cord entirely. Mantrii studied in a regular school, has an MBA in communications management from a reputed private institute, worked and lived by herself in Mumbai for a year before coming back and has many friends, male and female. Yet, six years ago, a distant relative, presumably invited by her parents to help in their search for a groom for Mantrii, asked her to "Show me how you walk".

That was about six years ago, and her parents are still at it. Mantrii isn't against marriage; she would like, like many girls her age, a partner, home, love, companionship. But it's been a difficult quest marred by rejections and jolts to her self-esteem. Families of prospective grooms, says Mantrii, have "implied" to her parents that they expected a financial incentive in exchange for marriage.

"The problem is our social conditioning. Even men with disabilities expect to marry an able-bodied woman," says Versha Kewalramani, 29, a corporate lawyer in Mumbai who has a rare skin condition called epidermolysis bullosa, characterised by skin blisters. Kewalramani speaks of a gendered bias in marriage prospects of the physically-challenged. "While a man, if educated with a well-paying job, expects to marry an able woman, a woman is expected to only marry someone with a disability," she says. Kewalramani, by her own confession, has a "liberal, well-to-do" background, grew up in cosmopolitan Mumbai, went to a regular school and has a mother who pushed her to go out, travel the world, get a career and be independent. She's just broken up with an able-bodied man she'd dated for a few months. This was her second boyfriend – her first had been a differently-abled man with whom, too, she broke up after a few months. "We found that we our personalities didn't match," she says.

Romantic liaisons such as Kewalramani's, with or without marriage in mind, may be fairly common especially among white-collar professionals in cities, but it is practically unthinkable for the differently-abled. As Mantrii found to her cost, her able-bodied male friends were fine with friendship, but were hesitant when it came to romance.

For those from somewhat conservative backgrounds, it's often their own inhibitions that get in the way. "Unfortunately, most differently-abled people have a poor sense of dignity and self-worth, which gets in the way of finding happiness with a partner. And it's the parents themselves who are responsible for not giving them a sense of self-confidence. Disabled members of a family are often not invited to come out and interact with visitors – as if they are a shame on the family," says Monga, who also counsels the differently-abled, including couples. "If their own families don't give them confidence, then how do you expect them to overcome their inhibitions and take a chance with happiness?"

Neha*, a 29-year-old accountant with a real-estate firm, exemplifies such diffidence. Polio-affected and wheelchair-bound, she is apprehensive about marriage. "At home, I have everything to cater to my needs. My family is sensitive and cares for me. I am independent. I don't know whether another person or family can be as sensitive to my problems. I'd rather be unmarried than find myself in an unhappy relationship. I am lucky my parents agree with me about this," she says.

Women with disabilities may have the dice loaded heavily against them, but men also face constraints when contemplating marriage or finding a partner. Forty-one-year old Ankur Dhir, who runs a small stationery business in Delhi and suffers from muscular dystrophy, says the thought of marriage has until recently been far from his mind. "It's not just my disability. I first need to earn enough to support a wife and family before thinking of such things," he says. "It was hard because my parents died when I was young and I had little support. It's only in the last two years that I feel I have the income and a household to offer a partner."

Blame it on the infrastructure

Others like Jatin Agarwal*, a software consultant in a Gurgaon MNC, want a partner who understands them and share the same values. "I'd like to get married to a differently-abled girl because I feel only someone who is differently-abled herself can understand me. But I also would like someone who is educated and independent and will fit in with my family," says Agarwal, who's registered on several matrimonial sites in his search for a bride.

"The problem, even in cities, is that there are so few places where the physically-disabled can meet and interact," says Kalyani Khona, co-founder of Inclov, a matchmaking app for the differently-abled and people with long-term illnesses. Inclov launched early this year and runs an off-line initiative, Social Spaces, where the differently-abled who've registered on Inclov can meet. Khona, just 23 years old, points to her own difficulties in finding a public space with requisite accessibility facilities for the event: "How many restaurants in the city have ramps and toilet facilities for the disabled, or passageways wide enough for wheelchairs? In a place like Delhi, there are just one or two like that."

The discourse on the differently-abled, says Preeti Monga, has until now been largely limited to inclusive schools and colleges and making sure they find employment. "These are important, but more important, I feel, are avenues for social networking. After all, what's the point if you don't have friends or a family to come home to?" she asks.

It is needs like these that Inclov are helping to meet. In just nine months, the app has notched up 4,000 registered members and brought about one marriage. Monga herself runs a similar initiative called Fusion, which brings together the differently-abled and able-bodied so they can network for jobs or romance.

These are, as yet, isolated and periodic efforts. Inclov has had six such meet-ups in Delhi, Mumbai, Chennai and Bangalore, while Fusion meets have been held only in Delhi until now. But both Khona and Preeti Monga recognise the initiative needs to reach into small town India to be really effective. Inclov, for one, instituted an "ambassador" programme under which it will support anyone who volunteers to organise a Social Spaces meet-up. Monga, meanwhile, is trying to get the Rotary Club, with its wide network, to support Fusion so the differently-abled can take part in their meetings.

The idea is to get the differently-abled out and about, interacting with those like themselves and others, gaining in confidence. Marriage or romance can follow.

(*Names changed on request)

| Sun, 4 Sep 2016-06:35am , Mumbai , dna

Category: Ableism 

Tags: UNCRPD 

By: Nilesh Singit | September 02, 2016

THE HINDU ARCHIVES During a tug-of-war contest in a mental hospital in Kerala, a file picture. It is important that all persons with mental disability are treated as autonomous persons worthy of respect.

By AMITA DHANDA

IN his classic study on famines, Amartya Sen contended that avoidance of famines did not just require food stocks but also the freedom to raise one’s voice against dwindling stocks. To prove the point, Sen referred to China, where people died of starvation just kilometres from well-stocked granaries because they did not have the freedom to speak of their piteous condition. Sen was arguing for the indivisibility of rights and contending that people could not be asked to choose between food and freedom, and that they needed both as the absence of one could result in the loss of the other. Despite Sen’s highly persuasive reasoning, it is often believed that freedoms are the luxuries of the endowed and there is no point in offering a choice to the deprived as it is obvious what they would choose. Material goods and facilities are not accorded greater importance only when issues of hunger and starvation are discussed. They are also seen to be critical for other survival needs. It is often claimed, not just in India, that in order to promote mental health, the development of infrastructure, personnel and services should be given greater importance than the will and preference of the persons receiving the services; that questions of choice and preference can be addressed after a robust system of mental health care has been established.

The piteous condition of the inmates of Berhampore Mental Hospital and the unanimous passage of the Mental Health Care Bill, 2013, by the Rajya Sabha were two pieces of news that were widely reported recently. This simultaneous surfacing of the problem and the solution causes one to ask, will the new mental health care law improve the life chances of those abandoned in these obsolete institutions? Does the Mental Health Care Bill have an exit plan for the inmates of these hospitals? Does it ensure that such institutions will be phased out?

The Bill starts on an ambitious note, promising every person the right to access mental health care and treatment from mental health services run or funded by the government. This mental health care has to be affordable, of good quality, plentiful, available to all without discrimination and, most significantly, “provided in a manner that is acceptable to persons with mental illness and their families and caregivers”. If for a moment it is presumed that the person with mental illness, the family and the caregivers have identical expectations from mental health care, this generic phrase has the potential to forge a link between services and choice. Unfortunately, this has not happened and instead the Bill has proceeded in the opposite direction.

The Bill allows a person, who so desires, to formulate in advance a direction to the doctors on permissible treatment and the manner in which it may be administered. Considering that the legislation makes patient preference in the manner of providing mental health care a right, it would be expected that the honouring of advance directives would be an article of faith. Instead, the Bill designs both the making of the advance directive and its subsequent implementation an obstacle race for the maker. Successful completion of the race does not ensure that the doctors and the family are obliged to obey the directive; both the doctors and the family can bypass the directive by following the procedure provided in the Bill. The discomfiture with following patient preference also comes to the fore when the doctors are exonerated from any liability, which may arise if they follow the patient’s advance directive.

In a similar fashion, the facility to appoint a nominated representative has been converted from a right of the patient to a power of the state. Thus where the patient does not nominate a representative, the statutorily designated list takes over. This is like asking a student to choose her working partner and as she is weighing her choices, a partner is provided and the teacher believes the student was provided an opportunity to choose.

As already mentioned, there was a possibility to construct the mental health care system premised on the preferences of persons living with mental illness. This required policymakers to accord respect to the choices made by them. Yet, the legislation only refers to drugs and treatments devised in allopathy and other systems of medicine such as Ayurveda, Unani, and homeopathy and yoga. No reference is made to the recovery interventions devised by persons with psychosocial disability, be it peer support, open dialogue, family therapy or culture-based interventions such as faith and temple healing, which even the mental health programmes of the country have admitted to provide relief to some persons with psychosocial disability. The Bill does not bar these preferences; but neither does it permit them. And users relying on these services cannot be sure of their choices being respected as the Bill requires persons with mental illness, unlike the rest of the populace, to prove they possess legal capacity. Just the presence of mental illness does not mean that the persons lack legal capacity, but the presence of mental illness is sufficient to question the legal capacity to make contemporary choices or issue advance directives.

So when the Bill refers to an essential drug list or state-of-the-art treatment facilities and medical insurance on an equal basis with persons with physical illness, it is primarily referring to the biomedical interventions provided by allopathy. For other medical systems, the Bill concedes inclusion in the essential drugs list if they have any drugs. Non-drug interventions which are being preferred by a number of people with psychosocial disability have just been ignored. If an ambulance or other means of swift and safe travel is provided to take an individual for the medical or other intervention they desire, then the ambulance service is perceived as support, but if the service is provided to transport an individual to a service they detest, then the home service would be seen as arrest and abduction. If a person with physical illness is provided an emergency treatment and he or she wishes to discontinue it after the emergency is over, they are free to do so. The same freedom is not available to persons with mental illness and this situation has not been remedied by the Bill.

CRPD and the Bill

This is the case even when the Bill is being enacted in order to bring the mental health law in the country in consonance with the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which was adopted by the world body in 2006 and ratified by India in 2007. Equality and non-discrimination is the centrepiece of the Convention and the full inclusion of persons with disabilities within the polity its overarching objective. Singling out persons with mental disability for legal capacity questioning and allowing such disability to be a criterion in procedures ordering compulsory institutionalisation are provisions that are in breach of the equality mandate of the CRPD. In acknowledgement of the fact that the perceptions of the non-disabled world do not match with the lived experience of persons with disabilities, the CRPD was drafted with the active participation of persons with disabilities. Absence of persons with disabilities could cause prejudice to resurface and stereotype to rule. To avoid this consequence, the CRPD expressly obligated the states to make all laws and policies relating to disability in active consultation with disabled persons and their organisations. The two-member team that drafted the Bill as also the Standing Committee for Parliament consulted disabled persons and their organisations and did introduce some amendments in the 2013 Bill on the strength of those representations. However, all submissions asking for recognition of will and preference, ouster of compulsory care and guardianship have been ignored.

What is the consequence of this selective engagement? The Bill makes some commitment in relation to services, essential medicines, and non-discriminatory medical insurance, but these services and medicines are not linked to actual preferences of persons with disabilities but what professionals and practitioners consider suitable. People with disabilities whose preferences are in line with what the professionals suggest stand to gain; others are left in the cold or made to accept whatever is on offer. Nobody asks whether recovery can result from such forced interventions. During the negotiations, persons with mental disabilities testified before the Ad Hoc Committee of the United Nations on how the humiliation of the forced intervention prevented them from seeking any treatment from the formal system.

If force and compulsion closes communication and drives persons into isolation, then is there not a case to legislate dialogue and negotiation?

The Bill has several provisions addressing the rights to liberty, expression, information and the right to legal capacity. However, these provisions primarily provide for procedures by which these rights may be deprived or curtailed. The legislation does not speak of means and methods by which these rights can be promoted, respected and realised. If this effort is not made, then can it be claimed that the Bill upholds the CRPD when the CRPD states that in no case shall a person with disability be deprived of liberty by reason of disability?

The quality of services is known to improve when the users of the service are empowered persons whose voices would be heard. Inmates of institutions, who have the highest stake in improving the quality of services, can do little in the matter as they enter the service voiceless and powerless. Lawmakers are concerned with wrongful admission, and they do not want institutions to be used if services that impose lesser restrictions on inmates are available. And yet there is no obligation to create such institutions. And the responsibility for ensuring that nobody obtains wrongful admission is placed on a Mental Health Review Commission, courts and legal aid. These are all review mechanisms external to the institution, and the Bill has no inbuilt correction mechanism. It has not built alliances with the natural watchdogs of any institution—the inmates themselves.

To go back to the question raised at the beginning of this piece, will the new law help the inmates of the Berhampore Mental Hospital? Despite all the additional resources the Bill promises to pour into the sector, the answer remains a reluctant no. For the inmates of the Berhampore hospital to have a better deal, it was important that all those with mental disability were treated as autonomous persons worthy of respect. If even one person can be forcibly treated or projected as dangerous or incompetent, then all overt, covert and hibernating persons with disabilities can be so treated. By not recognising this reality, the Mental Health Care Bill has failed to create a regime of universal mental health care.

The legislation has not looked at freedom and services as one indivisible whole, and thus services are being created not according to what persons with disabilities want and need but according to what the experts in the field believe they need. The decade of the brain tried to prove that “mental illness” was just a biomedical aberration. It failed. The descriptor “psychosocial disability” on the other hand captured the idea of a differently wired mind which is excluded by social norms, practices and beliefs. The biomedical approach towards mental diversity is concerned with fixing the individual, whereas the psychosocial is geared towards acceptance. Evidently, a robust mental health care law and policy require both. The Bill, in only seeing mental health care as a repair job, has failed to recognise the value of psycho-neural diversity.

With the Bill having such a smooth ride in the Upper House, its passage in the Lok Sabha is assured. However, just because the Lok Sabha has the numbers to enact the Bill is no reason to do so. A psychiatrist colleague has referred to the Bill as a work in progress. I agree. My only submission is to let the progress in the Bill happen when it is debated in the Lok Sabha and not a decade later. There are possibilities of transformation in the Bill, and I hope that those possibilities are seized by the House of the persons so that the most excluded members of the polity get their just due.

Amita Dhanda is professor of Law and Head, Centre for Disability Studies, at NALSAR University of Law, Hyderabad.

Category: Amita Dhanda 

Tags: UNCRPD, MSJE 

By: Nilesh Singit | August 28, 2016

 

The Tamil Nadu Association for Rights of All Types of Differently Abled and Care Givers has called upon the government to recognise mental illness as disability in need of government disability assistance. A resolution was passed to this effect at TARATDAC State Conference held here on Friday.

The resolution also called upon the State Government to implement the Government Order 27 that recognised 40 per cent disability and relaxed rigid norms for differently-abled assistance.

According to TARATDAC, the GO was passed in February following sustained campaign by the federation of disability rights groups. However, it is yet to be implemented. Also, disability assistance is being disbursed through Revenue and Differently-abled Welfare Department following two different guidelines and norms.

These variations should be removed, and assistance should be disbursed through the differently-abled department to all differently-abled persons.

Similarly, 40 per cent leprosy should also be considered for disability assistance, the resolution said.

According to TARATDAC, disability assistance of Rs.1,500 is issued under the category of ‘severe disability’ to those with over 75 per cent bodily disability. But, the same is denied for those with 75 per cent visual or hearing impairment.

The variations in disability assistance eligibility should be removed, the resolution said.

The TARATDAC also pledged their solidarity with the September 2 nation-wide strike of All India Trade Unions.

According to TARATDAC, the Centre has not yet shown any signs of bringing into force a Disability Rights Act, as promised by during the 2014 elections.

The resolution also alleged steady slashing of budgetary allocation for the differently-abled.

Despite Supreme Court’s directions, 3 per cent quota for differently-abled was yet to be enforced in the government jobs, the resolution said. TARATDAC also recorded that the allocation of Rs.200 crore under the Accessible India Scheme was negligible.

By: Nilesh Singit | August 28, 2016

 

Today, 26th August, Peter Lambreghts (ENIL Senior Officer to whom we said last goodbye yesterday) was going to pay his respect to the victims in Japan, one month after the attack of a man who killed 19 disabled people living in a care centre in Sagamihara – a small town near Tokyo. At least 25 more disabled residents of the care centre were injured. This attack once again brought forward the violations of human rights on disabled people, many of whom live with the threat of abuse and even murder.

ENIL with Peter Lambreghts as one of our lead activists has been continuously promoting the closure of all institutions – now and not later! Disabled people placed in institutions are often deprived of their legal capacity and of their right of choice and control over their own lives. Cases of abuse and neglect happen now and again in institutions in Europe and worldwide. The majority of these cases are not reported, since disabled people are often not aware of their rights and have no access to justice. Usually these cases become forgotten… too quickly. But not by us!

Disabled people have the right to receive support to be able to fully participate in and contribute to society. That can only happen if governments develop and invest in community-based services and promote independent living. An inclusive society is a better society not only for disabled persons but for everyone.

ENIL, in the memory of the Japanese victims and the memory of Peter, reminds once again governments in Europe and world-wide that institutions and care centres where disabled people are placed – often against their will – are in violation of human rights and the UN Convention on the Rights of Persons with Disabilities (CRPD). Article 19 of the UN CRPD recognizes the equal right of all disabled people to live independently and be included in the community.

Our thoughts are still with the victims of the attack, the ones injured and traumatised, and their families. May all rest in peace and may the governments react faster and stronger showing their commitment to making this world a place where human rights are guaranteed.

European Network on Independent Living – ENIL

Category: Independent Living 

Tags: UNCRPD 

By: Nilesh Singit | August 11, 2016

altspychcover-blog427 Caroline White at the office of the Hearing Voices Network in Holyoke, Mass. The program, which relies on members supporting one another, does not use the words “patient” or “treatment.” Ms. White, who hears voices in her head, said psychiatric therapy had made her feel “hopeless, because the drugs just made me feel worse.”

HOLYOKE, Mass. — Some of the voices inside Caroline White’s head have been a lifelong comfort, as protective as a favorite aunt. It was the others — “you’re nothing, they’re out to get you, to kill you” — that led her down a rabbit hole of failed treatments and over a decade of hospitalizations, therapy and medications, all aimed at silencing those internal threats.

At a support group here for so-called voice-hearers, however, she tried something radically different. She allowed other members of the group to address the voice, directly:

What is it you want?

“After I thought about it, I realized that the voice valued my safety, wanted me to be respected and better supported by others,” said Ms. White, 34, who, since that session in late 2014, has become a leader in a growing alliance of such groups, called the Hearing Voices Network, or HVN.   At a time when Congress is debating measures to extend the reach of mainstream psychiatry — particularly to the severely psychotic, who often end up in prison or homeless — an alternative kind of mental health care is taking root that is very much anti-mainstream. It is largely nonmedical, focused on holistic recovery rather than symptom treatment, and increasingly accessible through an assortment of in-home services, residential centers and groups like the voices network Ms. White turned to, in which members help one another understand each voice, as a metaphor, rather than try to extinguish it.

For the first time in this country, experts say, psychiatry’s critics are mounting a sustained, broadly based effort to provide people with practical options, rather than solely alleging abuses like overmedication and involuntary restraint. “The reason these programs are proliferating now is society’s shameful neglect of the severely ill, which creates a vacuum of great need,” said Dr. Allen Frances, a professor emeritus of psychiatry at Duke University.

Dr. Chris Gordon, who directs a program with an approach to treating psychosis called Open Dialogue at Advocates in Framingham, Mass., calls the alternative approaches a “collaborative pathway to recovery and a paradigm shift in care.” The Open Dialogue approach involves a team of mental health specialists who visit homes and discuss the crisis with the affected person — without resorting to diagnostic labels or medication, at least in the beginning.

Some psychiatrists are wary, they say, given that medication can be life-changing for many people with mental problems, and rigorous research on these alternatives is scarce. I would advise anyone to be carefully evaluated by a psychiatrist with expertise in treating psychotic disorders before embarking on any such alternative programs,” said Dr. Ronald Pies, a professor of psychiatry at SUNY Upstate University, in Syracuse. “Many, though not all, patients with acute psychotic symptoms are too seriously ill to do without immediate medication, and lack the family support” that those programs generally rely on.  Alternative care appears to be here to stay, however. Private donations for such programs have topped $5 million, according to Virgil Stucker, the executive director of CooperRiis, a residential treatment community in North Carolina. A recently formed nonprofit, the Foundation for Excellence in Mental Health Care, has made several grants, including $160,000 to start an Open Dialogue program at Emory University and $250,000 to study the effect of HVN groups on attendees, according to Gina Nikkel, the president and CEO of the foundation. Both programs have a long track record in Europe.

About three quarters of people put on a medication for psychosis stop taking it within 18 months because of side effects or other issues, studies suggest. Some do well on other drugs; others do not.  “I was told by one psychiatrist at age 13 or 14 that if I didn’t take the meds, my brain would become more and more damaged,” said Ms. White, who began hearing voices in grade school. “Of course I believed it. And I became hopeless, because the drugs just made me feel worse.”  On a recent Tuesday, Ms. White and seven others who hear voices gathered at the Holyoke Center of the Western Massachusetts Recovery Learning Community, which hosts weekly 90-minute hearing voices groups, to talk about what happens in those sessions. The group meetings themselves, guided by a person who hears voices, sometimes accompanied by a therapist, are open to family members but closed to the news media.

The culture is explicitly nonpsychiatric: No one uses the word “patient” or refers to the sessions as “treatment.”  “We need to be very careful that these groups do not become medicalized in any way,” said Gail Hornstein, a professor of psychology at Mount Holyoke College and a founding figure for the American hearing voices groups, which have tripled in number over the past several years, to more than 80 groups in 21 states.  Most of the people in the room had extensive experience being treated in the mainstream system. “I was told I was a ticking time bomb, that I’d never finish college, never have a job, never have kids, and always be on psychiatric medication,” said Sarah, a student at Mount Holyoke who for years has heard a voice — a child, crying — and in college started having suicidal thoughts. She was given diagnoses of borderline personality disorder and put on medications that had severe side effects. She asked that her last name not be used, to preserve her privacy.  In the group, other members prompted her to listen to the child’s cries, to ask whose they were, and why the crying? Those questions led, over a period of weeks, to a recollection of a frightening experience in her childhood, and an effort to soothe the child. This altered her relationship with the voice, she said, and sometimes the child now laughs, whispers, even sings.

"That is the way it works here,” said Sarah, who is set to graduate from college with honors. “In the group, everyone’s experience is real, and they make suggestions based on what has worked for them.”  Like many of the other alternative models of care, Hearing Voices Network is not explicitly anti-medication. Many people who regularly attend have prescriptions, but many have reduced dosages.

“I walked in the door on Thorazine and thought I couldn’t get better,” Marty Hadge said. “About all I could do is lie on the couch, and the doctors would say, ‘Hey, you’re doing great — you’re not getting in trouble!’” Mr. Hadge is now a group leader who trains others for that role. He no longer takes Thorazine or any other anti-psychosis medication.  Not everyone benefits from airing their voices, therapists say. The pain and confusion those internal messages cause can overwhelm any effort to understand or engage.  “People will come to our program because they’re determined not to be on medication,” said Dr. Gordon, the medical director of Advocates. “But that’s not always possible. The idea is to give people as many options as we can, to allow them to come up with their own self-management program.”

To do that, proponents of alternative care have much work to do. The programs are spread thin, and to scale up, they will probably have to set aside their native distrust of mainstream psychiatry to form alliances with clinics. In parts of Europe, including Britain and Denmark, such integration has occurred, with hearing voices groups and Open Dialogue-like programs widely available.   In this country, there is very little collaboration. Ms. White runs a hearing voices group in the forensic psychiatry unit of a hospital in Springfield, Mass., and there is a scattering of other medical clinics that work with voices groups. But the culture gap between alternative and mainstream approaches to psychosis and other mental problem remains deep, and most psychiatrists and insurers will need to see some evidence before forming partnerships. Last month, the influential journal Psychiatric Services published the first study of the Open Dialogue program in the United States, led by Dr. Gordon and Dr. Douglas Ziedonis of the University of Massachusetts.  The results are encouraging: Nine of 14 young men and women enrolled in the program for a year after a psychotic episode were still in school or working. Four are doing well without medication; the others started or continued on anti-psychosis drugs. Insurance covered about a quarter of the overall costs.

“It’s tiny, just a pilot study,” Dr. Gordon said. “But it’s a start.”

Correction: August 10, 2016
An article on Tuesday about a movement toward treating mental illness with largely nonmedical approaches that are focused on holistic recovery rather than symptom treatment misidentified the location of Advocates, a center that runs such a program. It is in Framingham, Mass., not Worcester. And because of an editing error, a caption with a picture of Caroline White misidentified the location of Hearing Voices Network, where the photograph was taken. It is in Holyoke, Mass., not Worcester.

New York Times

Category: Disability 

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By: Nilesh Singit | August 11, 2016

mentalhealth-bill1 Featured Image Credit: A demonstration outside the Health Ministry on World Mental Health Day in October 2012. Photo: V. Sudershan | The Hindu

The Mental Health Care Bill 2013 was passed in the Rajya Sabha on 8th August 2016. Since I have not seen the complete Bill with the 134 official amendments as yet I am not going to analyse the Bill per se in this article. This piece is more of an overview with some critique thrown in for people who are not directly involved with mental health sector. Also let me clarify at first place that comments made in this article are personal and do not reflect the views of organisation/network I am attached with. This Bill created lot of controversy within the sector as there seemed to be a never-ending tussle between persons with mental illness, the caregivers and the professionals who offer medical services. Sometimes the debates became too nasty to digest during discussion of the bill. At certain point of times I felt that care-givers are eternal enemies of persons with mental illness and vice-versa.

This whole debate made my life quite difficult –  as many friends in this sector know that I started working as a professional, became a person with mental illness and now I’m also a primary care-giver. Since I have gone through all the roles in my life, it was difficult for me to understand why we were quarreling so much – let’s be clear, the more fragmented we are within our movements, we give leeway to the government to divide us further.  It became mandatory for Indian Government to amend or rewrite few laws after we ratified United Nations Convention on Rights of Persons with Disabilities (UNCRPD); Mental Health Act of 1987 was one of them. The 1987 Act was archaic in nature which replaced the 1992 Indian Lunacy Act. Though there had been some changes like the terminologies where Lunatic Person was changed to Mentally Ill Person, the critics feels that changes had been cosmetic and situation of persons with mental illness remained as pathetic as before.

Now will the new Mental Health Care Bill bring in many changes? It is difficult to believe so; in general mental health care is a low priority for the government. Not only there’s severe scarcity of trained persons to deal with the need of the sector, the stigma attached to mental health remains abundant in our society. So much so that people like us, when we talk about our own illness, find deafening silence from general society and social campaigns like #ImNotAshamed are required to publicize that we are not ashamed to talk about ourselves. As a caregiver, I find it difficult that close friends or relatives, who call up and enquire about physical health if one of my family member has fever or any other ailment, turn off totally if I want to share with them the mental health issue of the same family member. One does not have someone to turn to share the issues surrounding care-giving entails.  There are definitely some good features in the proposed new law. The decriminalization of suicide is a positive step and there’s option for advanced directives where patients can choose what kind of treatment they want. However, in a country like India, where literacy rates are still not satisfactory, how will common people be aware of different kinds of treatments available to them, so that they can choose from the same remains a mystery to me. Like every other sphere, people coming from different marginalised groups will have less access to this information.

There are also chances that the state will utilise this clause of the Law by not giving treatment to a person with mental illness saying they opted for it – and getting treatment from state should actually be a basic right.  The most important issue that I find we are missing is that in our country we do not have specific law on Right to Health. Though this was proposed a few years ago and was put up in the Ministry’s website, the idea was completely forsaken for reasons unknown. Personally, I feel we would not have required separate Mental Health Legislation if we could include this in our Right to Health Law – mental health is essentially part of larger Right to Health. When we segregate mental health from general health, the stigma increases.

We also have Persons with Disabilities Act of 1995 which we hope will soon be replaced by Rights of Persons with Disabilities Act. For natural reasons mental illness is a component of both of them. Now, if Disability part of persons with Mental Illness could be addressed through this law and Health part through the Right to Health Act, it would have been an ideal situation. But we do not have much hope to achieve this ideal situation as “Divide & Rule” policy seems to please everyone.

Feminism in India dot Com

Category: Amendment 

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By: Nilesh Singit | August 11, 2016

MANISHA SHASTRI
Monday, August 08,2016

The Mental Health Care Bill, which was first introduced in the Rajya Sabha in August 2013, was finally debated and passed by the Upper House of Parliament yesterday.   The Bill repeals the Mental Health Act, 1987 and consists of 134 amendments, which many MPs in the Rajya Sabha hailed as historic, while also warning the Speaker that he must not rush through it given the importance of this amendment.

The first legislation addressing issues of Mental Health/ Illness in India was during the colonial era known as the Indian Lunacy Act, 1912; later it was amended and enforced in the form of the Mental Health Act, 1987. The focus of the Indian Lunacy Act and the Mental Health Act were primarily on treatment, regarding admission and discharge of diagnosed individuals and regulations for psychiatric institution among several others; however, both these legislations hugely lacked in making any provisions against the discrimination and upholding of the rights of persons with mental illness.

Mental Health/ Illness in India has always lacked awareness, understanding and nuanced perspective and the discourse on it has mostly been driven by Psychiatrists and other medical practitioners. Persons diagnosed with mental illness have a history of being discriminated, marginalised, and excluded and being denied basic fundamental rights. The Mental Health Care Bill was introduced in the light of the provisions made under the United Nations Convention on the Rights of Persons with Disability (UNCRPD), which was ratified by India in 2007. The Bill is an attempt towards aligning with the UNCRPD and addressing mental health issues from a right based perspective; while some amendments such as the decriminalisation of suicide are progressive, the Bill fails to holistically address the issues of Mental Health/ Illness. Some of the salient features of the Bill are:

  • The primary objective of the Bill is to ensure the right of every individual without discrimination to access affordable and good quality mental health services; which as per the provisions are to be made available by the Government in sufficient quantity and easily accessible geographically. It also states that persons with mental illness have the right to equality of treatment, protection from inhuman and degrading treatment, free legal services, access to their medical records, and complain regarding deficiencies in provision of mental health care.
  • The new Bill defines mental illness as ‘a substantial disorder of thinking, mood, perception, orientation or memory that grossly impairs judgment, behaviour, capacity to recognise reality or ability to meet the ordinary demands of life, mental conditions associated with the abuse of alcohol and drugs, but does not include mental retardation which is a condition of arrested or incomplete development of mind of a person, specially characterised by subnormality of intelligence’
  • It decriminalises suicide and allows for Electroconvulsive Therapy (ECT) only with muscle relaxants and anaesthesia, prohibiting the use of ECT on minors Makes provisions for ensuring ‘informed consent’ and for treatment procedures which maybe least restrictive in nature.
  • The Bill also makes provisions with regard to individual capacity, it states that every individual shall be deemed to have the capacity to make decision unless it is proved that the individual is (i) unable to understand and (ii) unable to appreciate the foreseeable consequences of his decision
  • The Bill makes provisions for the setting up of a Mental Health Review Commission; Central and State Mental Health authority and establishment of more treatment centres/ hospitals for mental illness.
  • The Bill provides that each individual has the right to make an Advanced Directive specifying whether or not they want to be treat for a mental illness; the nature of treatment and who the care – giver might be. However, if the doctor or care – giver do not wish to follow the directive they can apply to the Mental Health Review Board.
  • While certain provisions of the Bill are progressive in nature; the Bill in its entirety is not as progressive and does not reflect a nuanced understanding of mental illness. From the definition of mental illness to the various provisions in it, it is evident that the Bill does not take into account factors such as poverty, the immediate environment of the individuals and other socio – cultural factors which affect an individual’s mental health. Kanimozhi (DMK) and Viplove Thakur (INC) in their respective speeches emphasised on the need to look at and address environmental factors affecting mental health instead of only focusing on treatment; Husain Dalwai (INC) also pointed out that the Bill focuses only on illness and does not make provisions for prevention.

The Bill lays great emphasis on setting up several commission and boards for monitoring and regulation of Mental Health Care facilities; however, it fails to address issues of creating awareness, lack of human resource, absence of data regarding how many individuals in India suffer from mental illness, social integration of persons with mental illness and support systems for care – givers and family members. Madhusudan Mistry (INC), in a passionate speech raised several relevant issues pointing out that the Bill fails to lay down any provisions for creating awareness and addressing the stigma associated with mental illness. He also spoke of the need to entirely prohibit the use of ECT – a view held by several civil society/ user/ survivor groups; pointing out that internationally too there is a movement opposing ECT as a method of treatment. He also pointed out that the Bill is ‘individualistic in nature’ and does not make sufficient provisions for family members and care – givers who also face a lot of challenges – a view echoed by Rajeev Gowda (INC) in his speech demanding that counselling support also be provided to family members and caregivers.

Several other parliamentarians such as A. K. Selvaraj (AIDMK), Madhusudan Mistry (INC) and Vikas Mahante (BJP) also raised the need for a thorough survey and data base of the number of persons with mental illness.  While several speeches made in parliament yesterday were backed by facts and ground realities, several points raised reflected the lack of understanding regarding mental health. Towards the end of the debate, while the voting was being carried out the Deputy Chairman of the House P. J. Kurien referred to persons with mental illness as ‘mentally challenged’; several other parliamentarians in their speeches too seemed to confuse mental retardation with mental illness – which reflects the poor understanding of the very basic difference between mental illness and intellectual disabilities.

From several studies conducted in the country it has been found that 9 out 10 cases of mental illness go untreated – in the light of these appalling statistics the Bill does little to address mental illness and mental health keeping by taking into consideration the various socio – economic, political and cultural factors. It is also worth noting the poor turnout in the Rajya Sabha for the debate.   While the Bill is a welcome move towards the inclusion and better treatment of persons with mental illness, there is a lot more which need to be addressed and taken into account to ensure that the rights of persons with mental illness are protected.

(The writer holds a M.A. in Social Work in Disability Studies and Action; She is a Social Activist (Disability, Mental Health, Gender and Sexuality, Women and Child Rights); Poet and Writer.)

The Citizen is you

Category: Amendment 

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By: Nilesh Singit | August 09, 2016

article-uber-1-0807 Elizabeth Ramos outside of her apartment in East New York. Ramos has filed a new lawsuit against Uber and its lack of wheelchair accessible cars. (Kevin C. Downs/Kevin C Downs/For New York Daily)

A new lawsuit against Uber filed by a Brooklyn woman who uses a motorized wheelchair calls the ride-sharing app’s service linking people in wheelchairs to accessible yellow and green taxis “a paltry smokescreen.”

Uber touts the service as a lifeline for people with disabilities who have trouble traveling around the city.

But Elizabeth Ramos, 54, who belongs to disability rights groups and has used a wheelchair since she was 12 due to scoliosis, tested out the service twice — once outside her Brooklyn apartment building and again in Midtown.

On July 20, she tried unsuccessfully three times over the course of an hour from her home in Starrett City in East New York to get an accessible taxi through the app's UberWAV platform.

No rides showed up, leaving her with "no viable alternatives that offered the same level of service, response time, or convenience available to able-bodied passengers seeking on-demand transportation services,” the July 29 suit filed in State Supreme Court in Brooklyn says.

In Midtown on Nov. 5, it took Ramos about 40 minutes and two canceled pickups before she was able to find a yellow or green taxi through Uber that would take the trip, according to a separate complaint she filed with the city’s Human Rights Commission.

The city has more than 2,000 accessible yellow and green taxis out of a fleet of more than 20,000, according to the Taxi and Limousine Commission, which is aiming to eventually make half the fleet accessible.

It is also planning to expand its accessible cab dispatch system in Manhattan to cover the entire city early next year.

Even if there were more viable alternatives to Uber, Ramos said they would be no substitute.

Members of the Taxis For All Campaign, along with United Spinal Association and Disabled In Action, protest outside Uber's Manhattan office.

(James Keivom/New York Daily News)

“Uber is known, in its history, for being a little more economical,” she said. “Not having them defeats the purpose for people like myself, for people in a wheelchair, to live a normal life.”

An Uber spokesman declined to comment on the suit. But disability advocates have long protested the app’s lack of accessible vehicles.

Jim Weisman, of the United Spinal Association, said he’d love for Uber to make half of its fleet accessible, saying that “50% is better than no percent.”

Ramos, who uses the unpopular Access-A-Ride service, recalled the moment that Uber caught her attention.

After visiting her while she was at New York Presbyterian Hospital, her 29-year-old daughter booked an Uber back to Starrett City for about $35.

“In my head, I was saying to myself, ‘Wow, I wish I could do that,’” she said. “I would like to try and be more independent, on my own. Not just wait on Access-A-Ride.”

She is suing Uber under the city and state's human rights law to get the app classified as a public accommodation, like taxis.

“Everything that makes Uber what it is, everything that makes it attractive to any customer — the fact that it's fast, convenient and on demand — you just don't get that," Ramos' attorney Stan Sharovskiy said. “She tried to go ahead and get UberWAV and they said, sorry not available. Is any other able-bodied customer going to get that treatment? Absolutely not.”

Daily News : New York

 

Category: UNCRPD 

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By: Nilesh Singit | August 09, 2016

New York Governor Blocks 911 Legislation to Protect Disabled that would End Decades of Discrimination

Michael Carey, the founder of the Jonathan Carey Foundation http://jonathancareyfoundation.org/ has taken every imaginable step possible to assist former NY Attorney General Andrew Cuomo and now Governor Cuomo to stop the gross unequal treatment of people with disabilities in New York State to no avail. The outright obstinacy by Cuomo to provide equal rights, equal privileges and “equal protection of laws” for our most vulnerable disabled has been great. People with disabilities are precious human beings and can no longer be treated unequally. People with disabilities because of their disabilities and vulnerability need extra protections, not less protections. According to the NYS Constitution Article 1 under the Bill of Rights Sections 1 & 11 treating the disabled unequally is “discrimination in civil rights.” https://www.dos.ny.gov/info/constitution/article_1_bill_of_rights.html. On a federal level, the discrimination and civil rights violations are the same. The U.S. Constitutional rights for all people under the 14th Amendment are for every citizen of the United States to have “equal protection of laws”; this does not disqualify people with disabilities. https://www.law.cornell.edu/constitution/amendmentxiv New York State is discriminating against the disabled by violating their most basic of civil rights to immediate 911 emergency medical and police assistance when they are victims of crimes.

Governor Cuomo and his administration are treating 1,000,000 New Yorkers with disabilities differently, far differently, than other New York State residents. This horrific discrimination is costing many innocent people their lives as reported by Disability Rights New York (DRNY). The purposeful under staffing of facilities and group homes in efforts to cut costs and then to direct improperly trained direct care staff to call a nurse triage hotline instead of 911is extremely dangerous, it is discriminatory and has been proven to be deadly. DRNY has documented this known trend leading to many “untimely” deaths in their own words. In legal terms these “untimely” deaths would be called criminally negligent homicides. When these types of deaths are purposefully kept from 911, local police, District Attorney’s and even medical examiners they are being deemed “untimely” internally and almost always covered-up. In many case these are preventable deaths, but the person with a disability living in residential care facilities and group homes never had a chance because 911 was bypassed and never called. Swift emergency help could never arrive because they were not called, this is the worst type of discrimination because it is deadly. Call 911 for everyone else in immediate danger or when they are a victim of a crime, not so for the disabled in New York.

Governor Cuomo cannot continue to pick and choose whose equal rights or civil rights he wants to fight for; every New York State resident is equally important and valuable. Civil rights and equal rights are for everyone, not just for hand selected specific groups of people. New Yorkers with disabilities are of no lesser value or importance than anyone else and can no longer be treated differently and denied immediate 911 first responder medical and police services. The Cuomo administration has chosen to look the other way, stonewall and block emergency 911 legislation that directs mandated reporters and witnesses to physical and sexual assault crimes and deaths of people with disabilities to be reported immediately and directly to 911. http://assembly.state.ny.us/leg/?bn=A08307&term=2015

Emergency medical and police first responders cannot assist the disabled or ensure their equal privileges to 911 emergency services and their basic rights to “equal protection of laws” like for any other New York State resident if the 911 call systems are purposefully bypassed. Currently, tens of thousands of posters and wallet cards spread out throughout New York State direct mandated reporters that witness abuse and neglect of a person with a disability to report directly to Cuomo’s hotline, wrongfully titled the “Justice Center” not to 911. Here lies the extremely dangerous, deadly and discriminatory issue, the 911 call systems were set up decades ago to protect and assist everyone, not to negate and shun the disabled. Bypassing 911 cost 13 year old Jonathan Carey his life. http://www.nytimes.com/2011/06/06/nyregion/boys-death-highlights-crisis-in-homes-for-disabled.html

http://www.nytimes.com/video/nyregion/100000000849083/a-failure-to-protect.html

These civil rights violations and the clear discriminatory practices of keeping local police and emergency medical personnel out of the picture is only the tip of the iceberg regarding systemic cover-ups in NYS that in many cases lead to “untimely” deaths. Governor Cuomo took significant actions to remove all outside oversight of his abuse hotline to conceal staggering numbers of crimes and deaths from local authorities. Cuomo’s abuse hotline for the disabled receives massive numbers of calls; over 7,000 every month on average and most cases are never criminally investigated. https://www.justicecenter.ny.gov/sites/default/files/documents/monthly-data-report-February-2016.pdf Eleven to twelve people are dying in New York State’s extremely dangerous mental health care system on average every day and most deaths are never investigated as a possible crime, even when large numbers of deaths are individuals dying extremely young. State information obtained through New York State Freedom of Information Law (FOIL) reveals a large percentage of deaths where there was never a cause of death determined one to two years later. Other State documents obtained through FOIL reveal a pattern of most deaths reported to Cuomo’s abuse hotline never reported to medical examiners or coroners as required by law. Most reported suspicious and “untimely” deaths of people with disabilities living in NY State run or privately sub-contracted facilities and group homes are not handled the same as for everyone else. What is going on in New York State is insanity and is illegal.

Instead of finally leading to rectify severe systemic and deadly failures brought to light by the New York Times “Abused & Used” investigative reporting series http://www.nytimes.com/interactive/nyregion/abused-and-used-series-page.html?_r=0 Governor Cuomo took decisive actions to cover-up more crimes and deaths of people with disabilities than ever before. Federal civil rights and criminal investigations are critical to finally stop these horrific civil rights violations and criminal cover-ups. The Jonathan Carey Foundation and its founder Michael Carey who is Jonathan’s dad is insisting on swift federal civil rights and criminal investigations by the U.S. Department of Justice.

The Jonathan Carey Foundation “Civil Rights Walk for the Disabled” to Washington D.C. is one of the important battles in the war against the gross civil rights violations and discrimination of people with disabilities. The Jonathan Carey Foundation is following similar steps that Dr. Martin Luther King Jr. took to end discrimination and will persevere until the injustices and unequal treatment of some of our most vulnerable citizens is stopped. It is hard to fathom such levels of discrimination still exists over 50 years after Dr. Martin Luther King Jr. began fighting for civil and equal rights, but it does. Jonathan in an entirely different way suffered and died for a great cause which is to help many other innocent and extremely vulnerable children and adults with disabilities. Jonathan died at the age of 13 because he was disabled and because he was denied immediate 911 first responder medical and police assistance. As Jonathan’s dad I vowed and promised Jonathan that I would never forget his friends and I will not. We as a civil society cannot forget our most vulnerable, Jonathan’s friends, they need us and we need them. https://www.youtube.com/watch?v=gf4JxtSRygY

Jonathan was in dire need of help, he was ignored, he was shunned and Jonathan was discriminated against and as a direct result he was killed. These egregious human rights, civil rights and equal rights violations can and must be stopped. Great changes can happen when people begin to speak up and stand up against such injustices. Countless lives will be saved and many others spared the horrific grief of losing a child as well if we do. Stand with us for “equal rights” and “civil rights” for people with disabilities in New York State and throughout our great country by signing our petition at www.jonathancareyfoundation.org. Consider a donation of $9.11 to help 911 become required by law to be immediately called by all mandated reporters regarding all physical and sexual assaults, gross negligence of care, significant and suspicious injuries and when a person with a disability is in medical distress or stopped breathing all together and has died. Many people are resuscitated, if they are only helped and given a chance. http://jonathancareyfoundation.org/donate/

Mr. Michael Carey 5188529377

Category: UNCRPD 

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By: Nilesh Singit | August 09, 2016

7-w-ms2 Devotees offering prayers to the river Krishna

Devotees with disabilities, who want to take part in the Krishna Pushkarams, are likely to face severe inconvenience. The reason: there are no ramps at any of the bathing ghats.

Instead, the state government has come up with alternative arrangements to address the concerns of Persons With Disabilities (PWDs). Trained volunteers, belonging to NGOs will carry disabled people to the ghats for Krishna Pushkarams in Mahbubnagar and Nalgonda districts, as part of government's alternative arrangements.

"Volunteers will carry PWDs and senior citizens on special chairs from the booking counters to the ghats, assist them in bathing and bring them back to where they were picked up from," said Mahbubnagar district assistant commissioner (Endowments) B Krishna.

However, the state's initiative to utilise the services of volunteers to carry disabled people is being questioned by disability rights associations.

President of Network of Persons with Disabilities B Sreenivasulu demanded that barrier-free environment be provided for them in Pushkarams. "We are not dead bodies to be carried on shoulders but living human beings," he said, while explaining about the problems that are likely to be faced by the persons with disabilities during Pushkarams.

"Carrying us like dead bodies to ghats will not create a barrier-free environment that we are entitled to. An inclusive barrier-free environment that enables us to go on our own or through assistance of an escort, and not on their shoulders, should be put into place. Ramps should be created, announcements accessible to deaf be ensured and all officials from lower to upper ranks should be oriented and sensitised to deal with PWDs," said Sreenivasulu, a disabled person himself.

"During the Godavari Pushkarams, our car was parked very far from the ghat. My son carried me in his arms to the ghat and brought me back. There were no escorts or wheelchairs," said P Kamala, another PWD.

Meanwhile, Endowments department said that ramps have not been created with a purpose. "If we build ramps, all non-disabled persons might also use them and fall down into the river waters. That would bring more disaster," Krishna added.

Legal view

Prof Amita Dhanda, head of Centre for Disability Studies, Centre for Legal Philosophy and Justice Education, NALSAR University of Law, and a nodal officer of the Government of India preparing a national report on disability, stated, "We need accessible pathway till the ghats. Carrying disabled till ghats can be a substitute arrangement but not the end, not the permanent solution to ensure barrier-free environment. The government has to take forward from just providing special chairs. A more inclusive approach is needed which can be done technologically to ensure direct access to the ghats."

Visually-challenged can't access ‘krisP App’

The 'krisP app', launched by the Mahbubnagar district police especially for pilgrims to the Krishna Pushkarams in the district, has no features that can help the visually-challenged pilgrims. "We have not thought of the visually-challenged people while making the app. I would consult the police team who made the app and some features can be added to it so that the blind can use it for navigation," said Mahbubnagar SP Rema Rajeshwari.

The krisP App, available on Google play, can be used to navigate the 52 ghats of Mahbubnagar district. A voice navigation and information through recorded voice, if added to the app, will come handy for the visually-challenged pilgrims.

The New Indian Express

Category: Amita Dhanda 

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By: Nilesh Singit | August 08, 2016

SEATTLE (AP) — JoHanna Pratt, a 32-year-old, developmentally disabled woman, says she'd like to be able to take walks by herself, to visit friends and to participate in Special Olympics softball practices without having to get permission.

But Pratt lives at the state-run Rainier School, in the Pierce County city of Buckley, where, she says, the staff keeps a pretty tight rein. She's been unable to obtain support services that would allow her to live in her own home, despite having been approved for them.

"I don't like people following me outside," Pratt said in a phone interview this week. "Staff is always with me. It's stressful."

A disability-rights organization called Disability Rights Washington filed a federal lawsuit on behalf of Pratt and other developmentally disabled adults this week, alleging that the state's failure to place them in the living arrangements they seek violates the Americans with Disabilities Act.

U.S. Supreme Court precedent has established that developmentally disabled adults have a right to avoid being unnecessarily institutionalized, the complaint says, but Washington has failed to set up a system where they can receive services that allow them to live as independently as possible.

"The individuals we're talking about in this case, they've been assessed by the state to be able to live in the community and they've said they want to live in the community," said Sarah Eaton, a lawyer with Disability Rights Washington. "The difference living in the community is being able to go to the doctor, you can choose your provider. You can walk around your neighbourhood and say hi to your neighbour. You can have a job. You can go swimming at the Y."

The state's Department of Social and Health Services disagreed with the group's allegations in a response posted on its website, saying it is committed to empowering adults with such disabilities to "live the lives they want." The agency's Developmental Disabilities Administration has 44,000 clients, and only 726 live in the state's four "residential habilitation centers" — Rainier School, Fircrest School in Shoreline, Lakeland Village in Medical Lake, and Yakima School, the statement said.

"Throughout DSHS there are plans, supported by budget allocations, which support clients in community settings," the department wrote. "Looking at where and how individuals with intellectual disabilities live in Washington, it is easy to see the DSHS, and state policy, commitment in action."

The number of people living in the four institutions is the lowest it's ever been, down from more than 4,000 people in the 1970s. The number has fallen by about one-quarter in the past decade, the state said.

In an email, Eaton acknowledged that the state has been "incrementally reducing" the number of people in the institutions over the past four and a half decades, but "Washington is still far behind other states that have decided to invest in community-based services to more drastically reduce or eliminate the need for institutions."

DSHS itself has identified at least 91 developmentally disabled adults being institutionalized against their will because the state could not find them appropriate community-based services, or who were at risk of being institutionalized against their will, the lawsuit said.

The key issue is that the Legislature hasn't provided enough money for the 140 supported-living agencies across the state, said Scott Livengood, legislative chairman of the Community Residential Services Association. The organizations, which serve close to 4,500 people, are dependent on the state for funding. A decade ago, he said, the agencies received enough money to pay 24 percent above minimum wage; now, the funding level is just 14 percent above it. And the drop is even more pronounced in King County, where Seattle's $15 minimum wage law is in effect.

The low pay has significantly worsened turnover and made it tough to hire more staff, Livengood said.

"You can't look at serving new people when you can't staff the houses you already have," he said. "We look at this as a legislative issue. DSHS does what it can with the funding it's provided."

SFGate

Category: UNCRPD 

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By: Nilesh Singit | August 08, 2016

U.S. Supreme Court precedent has established that developmentally disabled adults have a right to avoid being unnecessarily institutionalized, the federal lawsuit says, but Washington has failed to set up a system where they can receive services that allow them to live as independently as possible.

JoHanna Pratt, a 32-year-old developmentally disabled woman, says she’d like to be able to take walks by herself, to visit friends and to participate in Special Olympics softball practices without having to get permission.

But Pratt lives at the state-run Rainier School, in the Pierce County city of Buckley, where, she says, the staff keeps a pretty tight rein. She’s been unable to obtain support services that would allow her to live in her own home, despite having been approved for them.

“I don’t like people following me outside,” Pratt said in a phone interview this week. “Staff is always with me. It’s stressful.”

A disability-rights organization called Disability Rights Washington filed a federal lawsuit on behalf of Pratt and other developmentally disabled adults this past week, alleging that the state’s failure to place them in the living arrangements they seek violates the Americans with Disabilities Act.

U.S. Supreme Court precedent has established that developmentally disabled adults have a right to avoid being unnecessarily institutionalized, the complaint says, but Washington has failed to set up a system where they can receive services that allow them to live as independently as possible.

“The individuals we’re talking about in this case, they’ve been assessed by the state to be able to live in the community, and they’ve said they want to live in the community,” said Sarah Eaton, a lawyer with Disability Rights Washington. “The difference living in the community is being able to go to the doctor, you can choose your provider. You can walk around your neighborhood and say hi to your neighbor. You can have a job. You can go swimming at the Y.”

The state’s Department of Social and Health Services disagreed with the group’s allegations in a response posted on its website, saying it is committed to empowering adults with such disabilities to “live the lives they want.” The agency’s Developmental Disabilities Administration has 44,000 clients, and only 726 live in the state’s four “residential habilitation centers” — Rainier School, Fircrest School in Shoreline, Lakeland Village in Medical Lake and Yakima School, the statement said.

“Throughout DSHS there are plans, supported by budget allocations, which support clients in community settings,” the department wrote. “Looking at where and how individuals with intellectual disabilities live in Washington, it is easy to see the DSHS, and state policy, commitment in action.”

The number of people living in the four institutions is the lowest it’s ever been, down from more than 4,000 people in the 1970s. The number has fallen by about one-quarter in the past decade, the state said.

In an email, Eaton acknowledged that the state has been “incrementally reducing” the number of people in the institutions over the past four and a half decades, but “Washington is still far behind other states that have decided to invest in community-based services to more drastically reduce or eliminate the need for institutions.”

DSHS itself has identified at least 91 developmentally disabled adults being institutionalized against their will because the state could not find them appropriate community-based services, or who were at risk of being institutionalized against their will, the lawsuit said.

The key issue is that the Legislature hasn’t provided enough money for the 140 supported-living agencies across the state, said Scott Livengood, legislative chairman of the Community Residential Services Association. The organizations, which serve close to 4,500 people, are dependent on the state for funding. A decade ago, he said, the agencies received enough money to pay 24 percent above minimum wage; now, the funding level is just 14 percent above it. And the drop is even more pronounced in King County, where Seattle’s $15 minimum-wage law is in effect.

The low pay has significantly worsened turnover and made it tough to hire more staff, Livengood said.

“You can’t look at serving new people when you can’t staff the houses you already have,” he said. “We look at this as a legislative issue. DSHS does what it can with the funding it’s provided.”

GENE JOHNSON

Category: UNCRPD 

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By: Nilesh Singit | August 08, 2016

Click here for the video

WATCH ABOVE: Tim Rose, a disabled man trying to fly to Cleveland, became emotional in describing his "dehumanizing" experience when an Air Canada representative told him that his wheelchair was akin to oversized luggage.

TORONTO – A Toronto man is accusing an airline of discrimination after he says he was barred from a flight because his wheelchair is about 13 centimetres too tall for the plane’s cargo area.

Tim Rose, 31, said he was told he wouldn’t be able to fly on an Air Canada flight this September to Cleveland, where he’ll be speaking to a large corporation about rights for people with disabilities.

Rose said he felt dehumanized when a representative from the airline told him that his wheelchair was akin to oversized luggage.

“I said, ‘This is discrimination,’ and they said, ‘No it’s not, it’s the same thing as if you had an oversized bag. If it doesn’t fit, it doesn’t fit.’ So essentially, she just compared me to luggage.”

The Canadian Transportation Agency says that transportation service providers must “ensure that persons with disabilities have equal access to federal transportation services” and accommodate people with disabilities up to the point of “undue hardship.”

It’s unclear, however, whether that applies to Rose’s case. The agency, a quasi-judicial tribunal mandated to ensure that Canada’s national transportation system is accessible to everybody, has not weighed in.

Rose, who works as an advocate for people with disabilities, said that while there are laws protecting the rights of people with disabilities, this situation is a bit murky because Canadian laws don’t explicitly mention mobility devices.

Rose said that since he posted about his situation on social media, all the airline has done to get in touch with him is post publicly on Facebook.

A representative from Air Canada said the plane that travels between Toronto and Cleveland – a CRJ regional jet – has a cargo hold door that is too small for Rose’s wheelchair.

The representative said the airline contacted Rose and presented him with two options: to take an indirect flight on planes that have a larger cargo door or to have the wheelchair transported on a different flight and sent to him when he arrives in Cleveland.

But Rose denied receiving any such offers.

“They have not presented me with any options. They haven’t even spoken to me (since posting on social media),” he said.

Rose said that taking a connecting flight isn’t a good option for him anyway because he also has a service dog, and transferring between planes takes extra time for him. In this case, he said it would be quicker for him to get a ride to Cleveland rather than take a flight with a layover.

In a video posted to Facebook, which now has more than 14,000 views, Rose said that there are no other carriers that offer direct flights between Toronto and Cleveland.

The Air Canada representative also said that the airline is looking at doing tests to see if there’s any way Rose’s wheelchair could be made to fit through the cargo door without causing damage.

Rose said all he wants is the same access to services as people who don’t need mobility devices. He said he’s not asking for special treatment – just the same access that everybody else gets.

Marc Roy, a spokesperson for Transport Minister Marc Garneau, said the minister’s office has held a number of roundtable sessions in the past few months to determine ways to “modernize” transportation policy, adding that an update to the policy is required every 15 years.

He said the most common feedback was about transparency in ticket prices, a faster security check process and greater accommodations for people with disabilities. He said there was a particular demand to make travelling easier for people with “invisible disabilities” like autism and dementia.

But Roy didn’t say whether any changes would be coming soon, saying only that they’re in the process of seeing “how or when” people’s suggestions could be implemented.

© 2016 The Canadian Press

Category: Aviation 

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By: Nilesh Singit | August 08, 2016

by on August 1, 2016

Can Disability Rights Movement Offer Model for Housing Activists?

The Republican and Democratic National Conventions are over, and the nation’s affordable housing crisis has struck out. Not a single prime time speaker even uttered the words “housing crisis” or relayed stories about working people unable to obtain a safe, healthy and affordable place to live.

President Obama noted that veterans’ homelessness has been cut in half, and Cory Booker referred to 2.3 million homeless persons in America. But there was no housing policy discussion, and none of the personal stories about the crisis from “average” Americans that dominated the Democratic Convention.

A person watching both conventions could easily conclude that housing is not among the many problems besetting working people. Yet whenever cities do polls on the biggest problems people face, housing is inevitably at or near the top.

Why this stark disconnect?

The nation’s history since the mid-1970’s shows a direct connection between the withdrawal of federal housing assistance and the emergence of widespread homelessness. The federal government provides housing assistance to a smaller percentage of eligible recipients than ever before. The lack of federal housing aid is widely recognized as a chief cause of homelessness and the inability of working people to obtain affordable housing.

Yet affordable housing remains off the national political radar.

On January 28, 2016 I wrote “Why the Presidential Race Ignores Urban America.” This was still at an early stage in both parties’ primary process. Unfortunately, the situation did not improve. No question about the nation’s affordable housing crisis was raised at any of the many debates. Even debates that had questions from “real people” rather than media ignored the housing crisis.

Given this pattern of exclusion, when Hillary Clinton’s convention speech offered a laundry list of action plans for her first 100 days I did not expect to hear a call for one million new Section 8 vouchers or an emergency 10 billion appropriation for new affordable housing construction. I was right. But I was struck by Clinton’s focusing on people with disabilities.

This was no accident. Disability rights activists had long been working with the Clinton campaign to get their issues into her standard stump speech. The disability community kept up the pressure at the grassroots with activists launching an impressive social media campaign to encourage candidates to address concerns of disabled constituents. Using the hashtag #CriptheVote  the initiative held Twitter chats and its founders — activists Alice Wong, Andrew Pulrang, and Gregg Beratan — gave interviews and wrote about a wide range of issues disabled voters care about in an election year.

So when disability rights activist Anastasia Somoza spoke to the Democratic Convention on Monday night, and when Clinton then referencing her talk during her convention acceptance speech, it was the culmination of a focused campaign to get disability rights on the national radar. It’s no wonder that some concluded that “2016 is the year disability rights broke through in national politics.”

I understand that focusing on disability rights at the convention dovetailed with Clinton’s early personal history of helping to secure the right of disabled kids to attend public schools. But Tim Kaine was a fair housing attorney for 18 years and a founder of a Virginia organization seeking to reduce homelessness. Yet this aspect of his background did not trigger any prime time DNC discussion of policy proposals in these areas.

Disability rights vaulted on to the national stage and the affordable housing crisis did not because advocates for the former more aggressively and unceasingly pushed for a spot at the table. I say this not to criticize the millions of activists working on affordable housing and homelessness issues; rather, disability advocates’ success shows that activists can get the affordable housing crisis on the national stage if this becomes a top priority.

A Fall Strategy

Injecting demands for national action on America’s housing crisis into the Clinton-Trump campaign will not be easy. The campaign scripts have already been written and this is by all accounts an unusual election.

Yet there is still an opportunity to force housing to get attention when any of the four candidates topping the national tickets comes to your town. Consider how cameras at the DNC could not avoid regularly showing delegates wearing No TPP signs.  It didn’t matter that most prime-time speakers bypassed the issue; the message was delivered to millions.

A large turnout of housing activists wearing “Fund Housing” or another slogan at presidential campaign events might not cause candidates to talk about affordable housing, but the signs may well end up in media photos of the event. Or a housing rally could be called within the campaign event or nearby. Housing advocates have to start somewhere. When decades have passed without affordable housing being part of presidential campaigns, creating visibility with signs is an easy first step.

Housing activists should also seize upon the opportunities made available by the many competitive U.S. Senate and House races. Both contests often include smaller public debates where questions about House opposition to HUD funding can and should be raised. And activists can prepare media to push the candidates on their position toward increasing affordable housing funding.

And housing needs a hashtag.  Just as #CriptheVote mobilized disabled people and their allies to push the disability rights agenda, housing advocates should seize the tools that social media offers to galvanize voters and influence decision-makers. Whether it be #FundHousing, #HousingRights or something else,  activists need a hashtag that can unite all those who support national action on the affordable housing crisis.

Other Priorities?

Housing activists spend so much of the year protesting evictions, building support for housing developments and dealing with local state governments that it seems there is no time left to focus on federal campaigns. Presidential events are often scheduled on very short notice, so activists cannot spend weeks or even months preparing as the anti-TPP folks did for the DNC.

But the past four decades have shown that the absence of federal action has caused the nation’s affordable housing crisis to steadily worsen. Housing advocates must get the crisis back in the national conversation, even if the path seems daunting.

This means that housing activists must do what disability rights folks did: push, push, and keep pushing to demand their agenda reaches the national stage.

The price of inaction is too steep.

Randy Shaw is Editor of Beyond Chron and Director of San Francisco’s Tenderloin Housing Clinic. His latest book is The Tenderloin: Sex, Crime and Resistance in the Heart of San Francisco

BeyondChron

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