An Alternative Form of Mental Health Care Gains a Foothold


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


What does the Mental Health Care Bill means For Persons With Mental Illness?


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

30 Years Later, Parliament Passes New Mental Health Bill: A Step That Falls Short

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

Uber slammed in lawsuit over accessibility by Brooklyn woman who uses wheelchair


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


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

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

Michael Carey, the founder of the Jonathan Carey Foundation 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.” 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. 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.

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.

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. 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 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.

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 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.

Mr. Michael Carey

Krishna Pushkaram ghats remain inaccessible to persons with disabilities


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

Lawsuit: State does too little for developmentally disabled

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.”