Sterilisation first option for the disabled

by Vince Chadwick
Jan. 2, 2013, 2:30 a.m.

PARENTS of women with intellectual disabilities are going straight for sterilisation procedures rather than ”existing and viable options” to help control menstruation and contraception, a national Senate inquiry has heard.  Associate Professor Sonia Grover, a gynaecologist at the Royal Children’s Hospital, told the hearing she was horrified when she received ”straight-out” requests for hysterectomies. She said increasing access to respite care, helping women manage their periods, and ensuring contraception is in place are options ”so these young women, if they are able, can enjoy a close sexual relationship without risks of pregnancy if they are not able to have a pregnancy and care for a child”.  Under Australian law, parents wishing to sterilise a child or adult children who cannot give consent for non-therapeutic reasons must apply to the Family Court or, in some states, a guardianship board.

However, Dr Grover expressed frustration with the therapeutic test. ”The question really is: Is this a procedure you would do on a non-disabled person?” she said. ”We should not be doing a sterilising procedure if we would not be doing it in somebody who did not have a disability.” The inquiry into the involuntary or coerced sterilisation of people with disabilities in Australia began in September as part of the government’s response to a series of calls from the United Nations for an end to non-therapeutic sterilisation without consent, regardless of disability.  The executive director of Women with Disabilities Australia, Carolyn Frohmader, said options such as family planning and menstrual management were not being explored because the sexuality of young women with disabilities was not widely accepted.

”Parents and other care-givers are not made aware of these or are discouraged from understanding their effectiveness,” Ms Frohmader told a recent hearing in Melbourne.  In one case from Queensland in 2010, an 11-year-old intellectually disabled girl (”Angela”) was sterilised after she began getting her period, which was heavy and irregular, at age nine. Contraceptive pills were ineffective, two gynaecologists reported she would benefit from the removal of her uterus, and a Family Court judge was satisfied less-invasive treatments had been exhausted.  ”I am not a doctor but I am the mother of a nine-year-old child and I found that case very problematic for a whole range of reasons,” Ms Frohmader said.

The inquiry has so far received just five submissions, including one from a parent explaining her wish to have her 27-year-old intellectually disabled daughter sterilised.  ”Her own life is not stable enough to support another life,” the parent wrote. ”Advocates who say she has the ‘right’ to have a child need to factor in her ability to be responsible for that child.”  The author said they had already raised three children, but at 54 did not want to raise their grandchild. ”Sterilisation of my daughter is one thing that I can ensure for her before I die, otherwise who will?”  The inquiry is receiving submissions until February 22 and is due to report on April 24.

http://www.naracoorteherald.com.au/story/1213079/sterilisation-first-option-for-the-disabled/?cs=7

Voice of Courage

From initial denial, a long fight against the condition, to her final triumph – Reshma Valliappan talks about life after being diagnosed as schizophrenic

The dark mascara and unusual piercings reflect her rebellious spirit. But five minutes into the conversation and one spots other shades of her personality. For 30-year-old Reshma Valliappan, life changed when she was clinically diagnosed as schizophrenic. Now recovered, she talks about her over 10-year-long battle with the dreaded condition.  Before our conversation, the screening of a film based on her life is in progress at Mazda Hall, Dastur Primary School on Saturday. Directed by Aparna Sanyal, A Drop of Sunshine traces the problems that schizophrenics face in India through Valliappan’s story. Conducted in association with Connecting, an NGO works for suicide prevention, the film speaks of the tag attached to mental illness.

Each frame is filled with details from her life starting with her initial denial. “I was 22. I couldn’t accept it. I really did not even know what Schizophrenia was!” she says, “I was told I am suffering from a mental illness. It took me a while before I made peace with the fact.”  At that time, Valliapan was pursuing a Bachelors in Philosophy from Fergusson College. After a range of treatments – right from drugs to therapy, she got a sense of what was happening with her. In a world that already seemed delusional, dealing with the society’s close-minded attitude was the biggest challenge for her and her family. “When I was on the antipsychotic medicines, I still heard voices but I was too low on energy to even respond to them,” she reveals. It was then that she decided to get off the drugs. “I am not against medication. It’s a personal choice. But, for me giving up the medication made me fight harder,” she says.

Between bouts of complete insanity and hallucinations to violent outbursts, she started seeking solace in art. “Art was my catharsis. Alternative therapies helped a lot. It gave me a new lease of life,” she says. She remembers her father looking at her paint one day. “My paintings soon became a way of communication between my parents and me.”  The real breakthrough came when she decided to leave home. “I was tired of being around. I wanted to be out in the world – dealing with real issues. And my family let me do that. I would drive to Mumbai, sleep in cars. I did odd jobs like bartending. I even rented a room, stayed at a friend’s place but eventually I would always return home.”

Valliapan’s resilient spirit never let her down. But she was not making any headway in dealing with her condition. “One day, a friend advised me to do something that I had never thought of. She said: ‘why don’t you talk to the voices and find out what they want?’” The thought itself was overwhelming for Valliapan. “I remembered how when I painted, the voices would guide me. I knew I was symptomatic but I had to do it. I gave names to them. With the help of my doctor, parents, and friends, I learnt to differentiate between them and everything else,” she says.  Today, Reshma is still hounded by the voices. Ask that is what gives her strength too. "The power of vulnerability is huge. They say your biggest strength and weakness is the same thing,” she says. Her artwork, with bold strokes and vibrant colours – represents her strength. She paints for a living now. This year, she and a group of friends have come together to start ‘Red Door’. “We are trying to make people aware about this condition by going to unusual places and talking to people. I know there are many out there who need help. I can’t wait for them to come to us, so that’s why we are going to them,” she says.

Indian Express

New disability bill draws mixed response from experts, activists

As the final draft of the Rights of Persons with Disabilities Bill, 2011 was submitted to the ministry of social justice and empowerment on June 30, activists working for people with disabilities, have mixed responses about the proposed Act.

According to Bhargavi Davar, managing trustee of the city-based Bapu trust for research on mind and discourse, the bill includes a liberal definition of ‘disability’ and disability rights unlike the existing Act. However, in some ways, it is inferior to the existing one.

"The Bill lists at least 20 disabilities as illustrative of the disability experience. A significant contribution is the inclusion of a range of civil political rights, such as right to liberty, life, political participation, among others. In terms of socio economic rights, the Bill offers manifold duties of the government and new entitlements. However, the new Bill is inferior to the existing Act in the context that the existing Act do not impose a limit on legal capacity, nor does it talk about guardianship," said Davar.

The new Bill, which promises to usher in landmark clauses to promote human rights and fundamental freedoms for all Persons with Disabilities (PwDs) without discrimination, has been drafted in harmony with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). 

Among other things, the proposed law suggests setting up of a National Disability Rights Authority to formulate regulations for ‘service animal’ training facilities so as to ensure that persons with disabilities are provided suitable animals to help them.
The bill also proposes to replace the existing practice of plenary guardianship with limited guardianship, a system of joint decision-making which operates on mutual understanding and trust between the guardian and the person with disability.

The ministry of social justice and empowerment had earlier constituted a committee with members representing persons with disabilities, NGOs and experts from the disability sector, to draft a new legislation to replace the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.

According to Davar, though the draft bill gives the right to full legal capacity, the concept of limited guardianship takes that benefit away.

"With any kind of guardianship, limited or plenary, the exercise of right for a person with disability becomes all the more difficult. The clause on ‘limited guardianship’ will again push the people with disabilities back to colonial times, as vested interests will take advantage of the clause and take away rights otherwise granted in the new Bill," said Davar.

At the same time, Davar is not sure about the implementation of the bill in the state, where the basic PwDs are, in many cases, non-existent. "The state coordination committee does not meet regularly and the budgets of 3% provided for, under the Action Plan for disability spending under all government heads, has been unutilised. State budgets for social welfare in general has been unutilised, whereas there is a crying need for huge reform of social / disability sector," she said.

Sadhana Khati, project leader, Bapu Trust, said, "Granting full legal capacity includes an array of rights – from the right of marriage to the right to vote. Though the draft grants the right to legal capacity, it does not grant ‘absolute’ right to legal capacity."
A lawyer, part of the Human Rights Law Network (HRLN), a collective of lawyers and social activists dedicated to the use of the legal system to advance human rights in India and the sub-continent, said on condition of anonymity, "The proposed law should have expounded on the concept of limited guardianship, instead of giving it a minimal definition. What the act proposes to do, i.e., replace plenary guardianship with limited guardianship sounds like a gain; but the finer details on the latter have not been specified. What the new Bill should have done is describe the process by which persons with mental disabilities – in conflict with law or in need of care and protection – are identified as a class apart, ensuring a participatory process, as the one ensured by the provisions of the Juvenile Justice (Care and Protection of Children) Act."

Pune, Times of India

"Why two different Bills on mental Health?"

Disability rights groups are up in arms against the divergent views being taken by the Ministry of Health and Family Welfare and the Ministry of Social Justice and Empowerment on the rights of persons with disabilities.

As per the United Nations Convention on the Rights of Persons with Disabilities, ratified by India, all human beings are presumed to have legal capacities. However, while the new Persons with Disabilities Act, 2011 under the Ministry of Social Justice and Empowerment propagates the concept of “full legal capacity” of persons with disabilities as per the Convention, the draft of the Mental Health Care Act, 2010 being piloted by the Ministry of Health and Family Welfare goes against the tenets of the UNCRPD.

“As someone explained to me the other day, the old Mental Health Act could forcibly cage people in a mental asylum for up to 90 days; whereas the new draft envisages caging people for up to 30 days. And, the signature of two psychiatrists is enough to make that happen,” says Javed Abidi, Director, National Centre for Promotion of Employment for Disabled People.

Wondering why there was a need to have two different laws as mental health was covered in the draft Persons with Disabilities Act, Mr. Abidi told The Hindu that the two views were diagrammatically opposite. “So, which view will ultimately prevail? What is Government of India’s position on legal capacity and the rights of people living with mental illness? The time has come to settle this extremely complex and yet critical matter,” he said, adding that he had brought this to the attention of the Union Social Justice and Empowerment Minister Mukul Wasnik.

“Logically, this should have been settled long ago. That is why we have been saying that the Social Justice and Empowerment Ministry has failed to discuss, debate and settle substantive issues. The non-governmental organisations in whom trust was placed were just too happy in each other’s company, listening to each other’s voices and patting each other’s back. Neither did they listen to people with disabilities, nor did they engage with the bureaucracy,” Mr Abidi said.

Pointing out that there was a huge gap between the positions of the two Ministries, Mr. Abidi said the draft of the Mental Health Care Act had been sent to the Ministry of Social Justice and Empowerment, but have received no comments have been received so far. “While Ministry of Health and Family Welfare is going ahead with another consultation next week, the Ministry of Social Justice and Empowerment should attend the meeting and sort out the issues,” Mr. Abidi has suggested to Mr. Wasnik.

The Persons with Disabilities Act grants all legal rights to the differently abled persons to decide even on their treatment, the proposed law drafted by the Health and Family Welfare Ministry categorises persons with mental illness as those who do not need any support or need minimal support and those who do need support.

The Hindu

Idaho to cut $8 million in Medicaid services

OISE, IDAHO

The Idaho Department of Health and Welfare is poised to make more than $8 million in cuts to Medicaid programs and services for low-income adults with severe mental illness and children with autism and other developmental disabilities.

The agency has drafted a new set of rules that authorize cuts in services or elimination of some programs designed to trim about $1.6 million from its current fiscal year budget. Those cuts, however, would also trigger the loss of another $6.5 million in federal Medicaid matching funds used to reimburse care providers.

The agency has been under pressure all year to find ways to cut more than $57 million from its Medicaid budget in fiscal 2011 to offset the financial pounding to the state general fund amid the economic downturn. The agency has only cut $36.2 million and will ask lawmakers in January for an additional $41.5 million to plug holes in the Medicaid budget.

"I know nobody wants to see a further reduction in services," said Leslie Clement, the department’s Medicaid administrator. "But we have to move forward. I think we’ve been pretty careful about the changes we’re making."

The temporary rules, obtained by The Associated Press through a public records request, are scheduled to be published Dec. 2 and go into effect in January.

News of the cuts have angered advocacy groups and organizations that provide services for hundreds of mentally ill and developmentally disabled clients who will be affected by the rules.

Critics say the cuts unfairly target a vulnerable population that can ill afford rollbacks in community-based services and preventative care and have no money to pay for them on their own.

Providers who stand to lose even more billable revenue say the changes could prompt layoffs or push organizations already reeling from state cuts to the brink of closure.

"This latest round of cuts is just hitting deeper to a population that can’t afford it," said Jim Baugh, executive director of Disability Rights Idaho. "What I think these particular cuts are going to do is pretty serious.

The cuts are spelled out in two separate, temporary rules, both set to expire at the end of the fiscal year on June 30 unless made permanent by the Legislature.

Changes identified by the department cover a range of services, from support in managing medication for mentally ill clients, teaching life skills and appropriate behaviours for those trying to live independent or more self sufficient to group therapy for adults with the most severe and persistent mental illnesses.

Clement says the agency made decisions based on input from providers and advocates and the agency’s own review aimed at eliminating duplication of services and preserved programs that could show clear, positive results.

"It’s a fairly common concern that certain Medicaid benefits … don’t seem to lead to any positive outcome," Clement said. "In the end I think we’ve preserved our full array of benefits to our population."

Idaho is not alone in looking to Medicaid cuts as a way to cut government spending in the recession, even as enrolment in Medicaid programs has ballooned amid rising unemployment.

A report issued by the Kaiser Family Foundation in September found that 48 states took some action to limit spending in Medicaid, the state-federal partnership started in 1965 to help low-income families and elderly.

Thirty-nine states cut or froze payments to hospitals, doctors and other service providers, and most, including Idaho, face the likelihood of more cuts in fiscal 2012, according to the report.

Advocates and providers acknowledge the state must make difficult choices to balance budgets. But they contend the new round of cuts will lead to devastating problems for affected clients and more expensive, long-term social costs.

They point to a recent case in Pocatello, where a man was shot at random and severely wounded by another man police say was recently dropped from a state mental health program. Police say the shooter suffers from mental illness and had been recently dropped from programs eliminated in a round of state cuts designed to save $9 million.

"These kinds of changes aren’t going to save us any money in the long run," said Kelly Keele, a board member for Human Supports of Idaho. "These people are going to get worse without those services and then we’re going to bear the brunt of that in our justice system and corrections."

Businesssweek

Kansans To Vote On Voting Rights of Kansans with Mental Illnesses

Right now, the Kansas legislature has the authority to prohibit someone with a mental illness from voting. Next Tuesday, voters will decide whether or not to change that. Constitutional Amendment Two, as it’s called, has not met much formal opposition, but proponents say a victory would still be extremely significant.

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Kansans with mental illnesses have been voting without state constitutional protections for decades. It was no big deal. Until about two years ago, when Rocky Nichols, director of the state’s disability rights centre, was working on a case involving the voting rights of a client with an intellectual disability.

"And I said, well, let me check the constitution. So I went to the suffrage provision and read it, and found out that there’s no prohibition for a person with an intellectual disability, but there is a potential prohibition for a person with a mental illness," says Nichols. "And it just hit me like a ton of bricks. I was just shocked."

Section two, article five of the Kansas constitution states ‘the legislature may, by law, exclude persons from voting because of mental illness, or commitment to a jail or penal institution.’
Nichols says what ensued after sharing what he learned with others in the mental health community was a groundswell of support to try and eliminate the prohibition. The campaign’s been largely funded by the Health Care Foundation of Greater Kansas City, which underwrites health reporting at KCUR.

Kansas is not the only place that includes such language about mental illness in its books. And a century ago, referring to people as idiots or insane within areas of voting restrictions and other legal issues was the norm. In fact, the Kansas legislature removed that language from article five in the mid seventies, but then replaced it with the term mental illness.
Still Lewis Bossing, a senior attorney at the Bazelon Centre for Mental Health Law, says in recent years, many states and the federal government have been moving away from statutes that exclude general groups of people – like those with disabilities – from voting.

"As a country, we’re moving toward a recognition in our voting laws that people with mental illness should have the same right to vote that everyone else does," says Bossing. "It’s a crucial distinction to note that for the most part, people with mental illness at most times are capable to make a choice. And for state governments to take away that right based a categorical blanket kind of concern about the impropriety of voting or some voter irregularity is simply a form of discrimination. There are a lot of people without mental illness who come into the voting process without a lot of information or perhaps without having given it a lot of thought. I don’t think there’s a reason to classify people with mental illness as having harder times making the choice than anyone else does."

To date, Kansas has not actually acted on its authority to prohibit people with mental illnesses from voting. Bossing says with the passage of legislation like the Americans with Disabilities Act, courts would likely overrule any attempt to do so. That happened several years ago in Maine, after voters twice rejected a measure to amend similar language in their state’s constitution.

Local advocates say they still view the language as a potential threat here, and concerns over public perceptions of the issue have many out this campaign season.

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Cherie Bledsoe faces a crowd of about seventy five at an Amendment Two rally in Overland Park. She says she’s struggled with mental illness but, has gotten help and since recovered. She now directs a consumer organization and says it’s crucial for the state to clean up the threatening language of the constitution.

"It stigmatizes those of us with mental illness. It furthers the discrimination, the disrespect, fear and misunderstanding that surrounds mental illness," says Bledsoe. "It gives a false impression of our capabilities and makes assumptions that paint a negative picture of people with mental illness."

Mark Wiebe, the rally’s M.C., and director of Wyandotte Centre, tells the crowd the issue is one that directly and indirectly affects just about everyone.

"Mental illness can strike anyone at anytime," says Wiebe. "Consider this: one in five Kansans can be expected to have a mental health disorder in a given year. That comes to more than half a million Kansans. It includes people with post traumatic stress disorder and many other disorders. Think about that last illness, PTSD. It can affect anyone who experiences a traumatic incident, but it’s most often associated with victims of sexual assault and soldiers returning from combat."

Weibe says the constitution’s language is of another era, when people didn’t know what they do today about mental health. He sees the change as part of a larger shift in the way society views and cares for people with mental illness.

Whether or not others see it that way, has yet to be determined…at least until next Tuesday, when Kansans take to the voting booth.

KANSAS CITY, KS (KCUR)

Mental health advocates sue state over funding

A group of mental health and disability rights advocates filed a class-action lawsuit against state and local agencies in federal court last week to put a stop to the governor’s veto of a long-standing mental health program.

For a quarter of a century, AB 3632 provided critical mental health services to children in California. The program served 20,000 youth in the state – that is, until Oct. 8, when Gov. Arnold Schwarzenegger gave it a line-item veto.

“Many of us had worked for months to make sure that this program was safe from budget cuts – and it was,” said Laura Faer, an attorney with Public Counsel, a pro-bono law firm. “But then the blue pencil came out of nowhere.”

The advocates – Public Counsel Law Centre, Disability Rights California, Mental Health Advocacy Services and Gibson, Dunn & Crutcher – say the veto violates the federal Americans with Disabilities Act and the Individuals with Disabilities Education Improvement Act. They asked for a temporary restraining order to keep the program in place while the case is being heard.

The AB 3632 program, which received $133 million in federal and state dollars, funded services that included crisis counselling, case management, medication management and residential placement for children with mental health issues.

The governor has not released a public statement about the cuts to the program. But H.D. Palmer, spokesperson for the California Department of Finance, told California Watch the state does not have the funds to continue the program.

Palmer said even though the state will no longer provide such services, it will expect local agencies to do so.

"There is a federal mandate under the Individuals with Disabilities Education Improvement Act that mandates that schools provide these services," said Palmer. "The schools will continue to provide these services."

But Faer said families are already suffering as counties across the state have stopped providing services and taking referrals.

“The stories are heart-breaking,” she told California Watch. She said her phone has been ringing off the hook with calls from desperate parents asking for help.

One plaintiff in the class-action suit, who is referred to only by the fictitious name of "Andrew" to protect his privacy, has a history of suicide attempts for which he has been hospitalized several times. The 17-year-old was adopted from the foster care system as a toddler after being exposed to foetal alcohol and drugs, according to his mother’s court declaration.

Through the state program, the Los Angeles County Department of Mental Health had lined up services for Andrew. In October, he was to be placed in a residential facility through the AB 3632 program. Since the program was slashed, he has been in juvenile hall.

“If my son doesn’t get the psychiatric help he needs, this cycle will continue – my husband and I don’t want him to take his own life or continue feeling like he has no help and way to get better. These services must be reinstated immediately,” Gail Campos, Andrew’s mother, wrote in her court declaration.

Faer, the Public Counsel attorney, also told the story of "A.L.," a 13-year-old with bipolar symptoms and a history of suicide attempts, whose family had recently been able to secure her residence at a 24-hour facility in Utah. On Oct. 12, when A.L., whom Faer asked be referred to only by her initials, arrived at the facility with her mother, they were told that the county department of mental health was no longer paying for the program. Mother and daughter were sent back to southern California on a plane.

Some counties are doing what they can to continue providing services for existing clients but often for a limited time, Faer said. The loss of incoming patients has caused some departments to begin talks of layoffs.

“If there are no more children filling the beds, they have to lay off staff,” Faer said.

Among the list of defendants in the case are the governor, the California Department of Education, the California Department of Mental Health, the California Health and Human Services Agency, the Los Angeles and Torrance unified school districts, and county mental health departments. The lawsuit claims the entities are denying children the right to education-related mental health services required by federal law.

In an Oct. 18 e-mail, the California Department of Education reminded local education agencies across the state that if county mental health agencies fail to provide and pay for special education and related services, federal law requires that "local educational agencies provide or pay for these services in a timely manner."

Candis Bowles, a lawyer with Disability Rights California, said children are entitled to the mental health services regardless of which agency provides them.

"Our position is that the students have a right to these services," she said.

CaliforniaWatchBlog October 26, 2010

Why Are We Expected to Be Brave in the Face of Illness?

The headlines read "Oliver Stone Hails Michael Douglas’ Brave Cancer Fight" and "Brave Brett Michaels wins Celebrity Apprentice." Even as Belgian action movie actor Jean-Claude Van Damme recovers this week from his recent heart attack, I’m sure his friends are saying he is being brave about even the admission of this attack, which came just one day after his 50th birthday while filming a kickboxing movie.

Are those who suffer from stage-four cancer, such as actor Michael Douglas, brave? Are those of us who live with the chaos of chronic illness, such as musician Brett Michaels, who is one of 23 million insulin-dependent diabetics, brave? Are these individuals more courageous than actors Patrick Swayze or Farrah Fawcett, who lost their battles to cancer last year?

Does our society create grand expectations that exemplify bravery and courage as the only acceptable response to an illness crisis? Celebrities coping with health crises are just like the rest of us. They get up each morning and put one foot in front of the other, whether that means an unpleasant medical treatment or going to the grocery store — but these actions are typically photographed and labelled as signs of "bravery."

I am sympathetic to the friends of celebrities who appear as a guest on a television shows such as The View and are asked to reveal how their celebrity friend with illness is "really doing." There is no appropriate answer. If someone is truly a friend, as Danny Devito is to Michael Douglas, he is not going to say, "He feels terrible and isn’t looking too hot either." Instead he will comment on how brave his friend is. It’s a considerate response to an awkward question, and it does contain a hint of truth.

Is there an alternative to being brave?

While there are tools online such as an illness symptom checker, there are few ways to understand how one is coping emotionally with a disease. If those of us with illnesses were to sit in bed and sob uncontrollably, how long would it take until our friends stopped calling us brave and said we were a basket case? Can a good cry be a sign of bravery, too? Who among us is not brave while fighting a disease that threatens to take away our quality of life or life itself?

What exactly is bravery?

The definition of the word "brave" includes possessing or displaying courage, being able to face and deal with danger or fear without flinching, and making a fine appearance.

I believe anyone has dealt with the fears of a health crisis certainly has moments of bravery. But let us not forget that emotions are fragile at times; allowing ourselves to be vulnerable and let some emotions through is not only acceptable but a healthy coping tool. Tears do not signify a lack of bravery.

When our loved ones see us look the doctor in the eye and ask, "How long do I have to live?" they are seeing us "make a fine appearance" as the definition of bravery possesses. They may not see the tears that fall uncontrollably in the lonely moments at 3 AM. Brett Michaels’ Rock of Love show may have been a successful indulgence, but when he was fighting for his life, it was his daughter’s fear of growing up without him that "gave me this unsinkable strength," he declared on Oprah on May 19, 2010. "It gave me this amazing courage to want to survive."

How does one show bravery in the midst of illness?

In 2009 I spent eight days in the hospital when I contracted the flesh-eating bacteria in an ankle wound that quickly spread up my leg. To be honest, I felt brave at times. I did not shed a single tear. My husband brought my then-five-year-old son to the hospital to play with the electric bed and eat mac-and-cheese from the hospital cafeteria. I gritted my teeth every couple of hours when another medical professional would visit my room with the intent of causing some kind of pain.

So, within the context of the definition of bravery, I made a fine appearance. I don’t know if I possessed courage, but I tried to display it. When faced with danger (like the daily debriding of the wound) I did my best not to flinch. But what choice did I have? The needles, IVs, MRIs, and pain medication disbursement were not in my control. I tried to be brave, but most of the time I was just choosing to "act" brave, despite my fear of the procedures and pain, frustration of the circumstances, and even panic over the possibility of losing a limb or even my life.

Can faking bravery can be enough to get us through?

In conclusion, let us remember that bravery can be a choice. Even if we do not feel courage, we can still seek to display it, we can attempt to face danger without flinching, and we can make a fine appearance. At the same time, let us not forget that we are human beings who were designed to feel fear, need affirmation and loving support, and shed tears. For myself, this is intertwined with my faith in God and knowing when to surrender to the emotions and when to surrender them over.Finding the right balance between putting on a brave front, and being true to our own emotions is, I believe, one of the best coping tools we can discover for the journey of chronic illness.

Bravery comes in many forms, not all of them gallant or daunting tasks. Michael Douglas’ films list is likely not important to him at the moment. Despite side effects of treatment for stage-four cancer, he recently walked his daughter to school, revelling in the moment that he was able to do so and wanting to treasure the simple moments. His bravery came in venturing out into the public eye, where his appearance and strength could be observed and discussed. Each of us must decide our own definition of bravery, and for those of us who know how much we suffer in silence, it may be as simple as making a fine appearance and then being our true selves around those we love and trust the most.

Lisa Copen is the founder of National Invisible Chronic Illness Awareness Week and Rest Ministries, the largest Christian organization that specifically serves the chronically ill. Visit IFoundLisaAtHuffPost.com to for the current featured free download that will help you or someone you love cope better with chronic illness.

The Huffing Post

Advocates sue state over mental health cut-off

LOS ANGELES (KABC) — A class action lawsuit has been filed against Gov. Arnold Schwarzenegger and several Los Angeles County agencies because of state budget cuts.  The plaintiffs say cutting a $133 state million mental health program is discriminatory against the more than 20,000 special education students across California.  The 25-year-old program was run through county mental health departments and offered services required by federal law.

A spokesman for the governor said it’s ultimately up to school districts to provide those services and that there was nothing illegal about the governor cutting the program with a line item veto.  Public Counsel, Disability Rights California, Mental Health Advocacy Services and law firm Gibson, Dunn & Crutcher are some of the organizations taking part in the lawsuit.  The lawsuit also names as defendants the state departments of Education and Mental Health, the Los Angeles County Department of Mental Health, the Los Angeles Unified School District and the Los Angeles County Office on Education.

About 8,000 children are affected in Los Angeles County.

The Associated Press contributed to this report. (Copyright ©2010 KABC-TV/DT. All Rights Reserved.)

Justice Dept. Pushes For Services To Move Patients Out Of Mental Hospitals

A sweeping agreement this week between the Justice Department and the state of Georgia highlights an aggressive new campaign by the Obama administration to ensure that people with mental illness and developmental disabilities can get services in their communities and not be forced to live in institutions.  The settlement, announced Tuesday, will be used "as a template for our enforcement efforts across the country,’" said Thomas Perez, assistant attorney general for the Civil Rights Division at Justice, in a statement announcing the accord.

The agreement ends three years of legal wrangling over Georgia’s mental health system. National consumer advocacy organizations called the Georgia settlement unprecedented, with Curt Decker, executive director of the National Disability Rights Network saying in an interview that the agreement "sends a message to the rest of the country."  The Justice Department action demonstrates broader enforcement of the landmark 1999Olmstead decision by the Supreme Court. The court in Olmstead – also a Georgia case — ruled that under the Americans With Disabilities Act, unnecessary institutionalization of people with disabilities is a form of discrimination.

The action follows decisions by Justice to file briefs and join Olmstead-related lawsuits in several states, including New York, North Carolina, Arkansas, California and Illinois. "We will continue to aggressively enforce the law, and we hope other states will follow Georgia’s example," Perez said.  As part of the accord, Georgia agreed to specific targets for creating housing aid and community treatment for people with disabilities, who in the past have often cycled in and out of the state’s long-troubled psychiatric hospitals. The state said it will set aside $15 million in the current fiscal year and $62 million next year to make the improvements.

The state agreed to:

• End all admissions of people with developmental disabilities to the state hospitals by July 2011.
• Move people with developmental disabilities out of hospitals to community settings by July 2015.
• Establish community services, including supported housing, for about 9,000 people with mental illness. These individuals, Perez said, "currently receive services in the state hospitals, are frequently readmitted to state hospitals, are frequently seen in emergency rooms, are chronically homeless or are being released from jails or prisons.’"
• Create community support teams and crisis intervention teams to help people with developmental disabilities and mental illness avoid hospitalization.
• Georgia Gov. Sonny Perdue said the agreement "moves us towards our common goals of recovery and independence for people with mental illness and developmental disabilities."

Lewis Bossing, a senior staff attorney at the Bazelon Centre for Mental Health Law, a Washington, D.C.-based advocacy organization for people with mental illness, said the "ground-breaking" settlement capped a flurry of federal legal activity in disability cases during the past 18 months. Bossing said the Justice Department, by spelling out an array of community services required to meet Olmstead criteria "will make it more likely that states will change the way they do business with people with disabilities."  Over the past year and a half, Department of Justice attorneys:

• Filed a brief in support of North Carolina litigation seeking to keep two individuals with developmental disabilities in community settings. A proposed cut-off of funds jeopardized the housing for the two. Perez said in an April statement about the case, "We will not allow people with disabilities to be a casualty of the difficult economy."
• Filed a motion to intervene in a lawsuit in New York seeking supported housing units for thousands of residents of "adult homes."
• Filed briefs in existing lawsuits in Florida, Illinois and New Jersey against what the agency called "unnecessary institutionalization" of people with disabilities.

The Justice Department began probing the Georgia mental hospitals in 2007 after a series in the Atlanta Journal-Constitution found dozens of patients died under suspicious circumstances in the state-run facilities. The newspaper also chronicled abuse by hospital workers; overuse of medications to sedate patients; and discharge of many patients to homeless shelters.  The state agreed to improve the hospitals in a January 2009 agreement with the Justice Department, in the final days of the Bush administration. But a coalition of consumer groups filed a brief in opposition to that settlement, saying it failed to improve hospital discharge planning and services in the community.

The Justice Department later backed away from the original terms of the deal and eventually added the Olmstead issues in a separate complaint in January. Last month, the federal judge in the case ratified the original hospital agreement, but let the Olmstead portion proceed, which culminated in the second agreement. The community services pact will have an independent monitor to assess its progress.  Change can’t happen soon enough for Rhonda Davidson. She was discharged from a Milledgeville, Ga., mental hospital when the state closed her unit earlier this year. While Davidson, who has schizophrenia, has found a group home in metro Atlanta to live in, she has not received the treatment program and employment help she needs, says her attorney, Sue Jamieson of the Atlanta Legal Aid Society. This agreement should help accelerate that help for Davidson and others, Jamieson said.

Kaiser Health News

Depression industry in a slump

By Clive Cookson and Andrew Jack, FT.com June 15, 2010

A drawing by a patient suffering from depression. Several large drugmakers are scaling back research into antidepression medication.

STORY HIGHLIGHTS

• WHO: Depression causes more disability than any other disease
• Several drugmakers are ending research in depression
• there are few new scientific leads in the laboratory
• The industry is being flooded by cheap generic drugs
• Clinical trials are particularly hard to organise for antidepressants

Caroline “came out” last month. After 30 years fighting clinical depression, she told friends and colleagues at KPMG, the accountancy firm where she works, that she wanted “to battle this illness openly and help others fight it too”.  “People at work were absolutely amazed — and totally supportive,” says the 47-year-old tax manager. “They couldn’t believe I was suffering from depression. But I had devoted a lot of energy to hiding it, and I decided I didn’t have energy to waste.”

Caroline has joined the small band of people willing to risk what is widely seen as the stigma attached to depression and similar mood disorders. Another recent example is the writer Allison Pearson. They are the visible tip of a growing pandemic of what the biologist Lewis Wolpert memorably called “malignant sadness”. According to the World Health Organisation, depression causes more disability than any other disease, affecting more than 120m worldwide. The cost of all this is thought to exceed $100bn (£68bn, €82bn) a year. On the face of it, then, depression presents a classic “unmet medical need” with a vast potential market that should be a priority for increased pharmaceutica research and development. In reality, quite the opposite is happening. Several of the largest drugmakers have recently decided to curb or cease research in the field, reducing the funding and expertise available to find better treatments.

The withdrawal reflects growing financial pressures on the industry to cut spending on high-risk low-profit areas such as mental health, where there are few new scientific leads in the laboratory and many cheap generic drugs are coming on to the market. Yet neuroscientists say research into the biology of depression, funded by public agencies and smaller biotechnology companies, is on the brink of breakthroughs. In February Andrew Witty, chief executive of  GlaxoSmithKline, said his company would stop work on antidepressants, bringing an end to research by the developer of drugs such as Wellbutrin and Seroxat. GSK denied that its decision was related to the public criticism, regulatory scrutiny and litigation over suicidal feelings and other alleged side-effects generated by Seroxat in recent years.

Rather, Mr Witty said there were more promising and productive areas of research in its portfolio, while  antidepressants were “among the most expensive, high-risk” drugs to develop, with weak “endpoints” that made it difficult to measure likely success until late in the development process. AstraZeneca took a similar view a few weeks later, winding down its discovery work on depression and other mental disorders as it pared back in-house research spending. At the heart of the problem is the difficulty in first identifying appropriate patients to take part in clinical trials and then proving that they do better on the new drug candidate than on placebo (dummy pills). “That is the number one reason why we as an industry are moving away from an area that has an incredible burden of disease,” says Frank Yocca, AstraZeneca’s head of discovery for central nervous system drugs.

Clinical trials are particularly hard to organise for antidepressants because, for a start, medical definitions of  depression and its severity are not as clear-cut as for most other diseases. In addition, reliable “bio­markers”, objective measurements of disease progress such as brain scans or blood tests, are unavailable.  I saw depression was a real hell, with people waking up at 3 or 4am in atrocious discomfort

Then there is the large — and mysteriously growing — placebo effect, which makes it hard to demonstrate statistically that patients taking the active drug are doing better than those on dummy pills. Psychiatrists have long recognised that patients with depression and other mood disorders are susceptible to the suggestion that they will get better. But it is not clear why placebo power should have increased, as analysis of clinical trials over the past 30 years shows  it has. “It would be like invoking magic to suggest that people are becoming more suggestible,” says John Geddes, professor of psychiatry at Oxford University. “The change is more likely to be an artefact of the way patients are recruited to clinical trials.”

Supplements for depression: What works, what doesn’t

Finding trial volunteers — who are depressed, not taking an existing drug and willing to try an experimental one — has become harder over the years, says Chris Thompson, chief medical officer for the UK’s Priory hospital group. In response, investigators have been (unconsciously) upgrading the level of depression of potential subjects, so that they meet the criteria for inclusion. But once the trial is under way, researchers no longer have a motive to exaggerate the volunteers’ symptoms. Everyone, whether on drug or placebo, seems to get better — “which is catastrophic if you are trying to discover how effective the drug is”, says Prof Geddes, who chaired the depression and anxiety part of the UK Medical Research Council’s recent mental health research review. “Everyone in the field knows that this happens.” So researchers are discussing ways to reduce the problem — for example, dropping placebo-controlled trials and comparing new drugs with the best existing treatments.  Yet even if clinical trials were easy to organise, drug companies might not have a great incentive to innovate, given the downward trend in the antidepressant market. Although prescriptions are rising, their value is falling as the new generation of antidepressants introduced during the 1980s and 1990s, such as Eli Lilly’s Prozac and Wyeth’s Effexor, lose their patent protection and cheaper generic versions appear.

IMS, a provider of healthcare data, says global antidepressant sales peaked in 2006 at $20.2bn. Last year the market was worth $19.2bn and Datamonitor projections show a 4 per cent annual fall until 2014, when slow growth may resume. With the overall pharmaceutical market growing more than 5 per cent a year, the share taken by  antidepressants is shrinking. Existing classes of antidepressant — known as “selective serotonin reuptake inhibitors” (SSRIs) and “serotonin norepinephrine reuptake inhibitors” (SNRIs) because of the way they function in the brain — work reasonably well for 60-70 per cent of people. Their side-effects are less serious than the previous generation.  It would be like invoking magic to suggest that people are  becoming more suggestible

Caroline says Prozac helps to keep her depression under control, though occasionally she has to take spells off work — most recently three days in January when “I just couldn’t answer my phone, or have someone ask ‘how are you?’ without my bursting into tears”. She adds that cognitive behavioural therapy, a form of counselling, has helped her avoid incipient bouts.  Ms Pearson meanwhile took sertraline (Zoloft) for a few months. “It seemed to help control the anxiety but it also appeared to muffle my mind — everything felt as though it was on the other side of a piece of Perspex,” the British author says. “I was trying to finish a novel, which requires maximum clarity, so I stopped taking  the medication. I got the novel finished but the anxiety returned.”  Some smaller pharmaceutical and biotech companies are still looking for better antidepressants. “I’m almost encouraged by big competitors pulling out,” says Jacques Servier, founder of France’s privately owned Servier Laboratories. “They are often dominated by financial pressures. We are independent, have more liberty and can afford to be more daring.”

Mr Servier’s commitment to antidepressants was inspired by his background in psychiatry: “I saw depression was a real hell, with people waking up at 3 or 4am in atrocious discomfort, feeling a loss of activity and sometimes suicide.” Mr Servier’s research led to the launch of Valdoxan (agomelatine), a new class of antidepressant that claims improved sleep and fewer side-effects. Though the drug has been used by about 100,000 patients, he concedes it is not easy to compete with low-cost generic alternatives: “Generics are very good for those who respond to them but the price is very low and the companies don’t contribute to research.”

Another company committed to depression research — and shielded by a non-profit foundation from short-term  financial pressures — is Lundbeck of Denmark. Lundbeck sells Cipralex, which it also argues has fewer side-effects than generic alternatives. Two other compounds in late-stage trials have a new mechanism of action. Ulf Wiinberg, chief executive, hopes that within a decade, more targeted therapies for different subgroups of patients, “just like we have for cancers”, will emerge. “The first time patients present with depression, they will definitely receive a generic,” he says. “But after the first or second failure, they need new drugs. We should be treating with the best available therapy.”  Two US companies with promising candidates are Clinical Data Inc (CDI) and Targacept. CDI has applied for Food and Drug Administration approval of vilazodone, which could reach the market next year.  Targacept is about to start the final trial of TC-5214 in collaboration with AstraZeneca, which agreed in December to pay $200m up front for rights to the drug — demonstrating that, while big pharma companies are winding down their research into antidepressants, they are prepared to pay for promising candidates developed elsewhere.  Many mental health experts are less concerned with the pharmaceutical industry than with what Dr Thompson calls the “scandal of how little public money there is for research into the biology of depression”. A better understanding of what happens in the brain when people feel seriously depressed would give researchers a lead to develop better drugs. One promising avenue, says Prof Geddes, is to use powerful new brain imaging techniques to probe the neural processing of emotion.

Like all complex disorders, depression results from many genes and environmental factors working together. The genes remain largely unknown and so do the environmental triggers that might explain the rise. “There is evidence that the incidence of depression is increasing and that this is over and above better recognition,” says Prof Geddes.  Its onset may on average be earlier in life than it used to be, adds Dr Thompson. Possible causes range from the stresses of modern life — if anything exacerbated by recession — to excessive eating.  Psychiatrists say the worst thing people can do is to suffer in silence. Even if they cannot bring themselves to be as open as Caroline, they should approach a self-help charity, such as the UK Depression Alliance where she has begun to work as a volunteer.  “Depression has often wreaked complete havoc with my very existence,” she says. “With no cure on the horizon, you cannot battle this disease on your own.”

Hope lies in cells that spring eternal in the neurone zone

The bleakest dogma of 20th-century neuroscience held that the adult brain never grows: we can only lose neurones (brain cells) as we get older.  But research led from the Salk Institute in California and Columbia University in New York has overthrown the dogma. New neurones do form in parts of the brain — and the process, known as neurogenesis, offers a promising way of fighting depression.  Scientists showed in 2003 that existing antidepressants achieve some of their effect by stimulating growth in the hippocampus, a brain area involved in learning and memory. The discovery seems to solve a pharmacological puzzle.  Antidepressants such as Prozac are supposed to work by increasing the level of certain brain chemicals (such as serotonin) that transmit signals between neurones. But the drugs raise  neurotransmitter levels very quickly, so why do they take several weeks to lift the sufferer’s mood?  The explanation for the delay — that it reflects the time taken for new cells to grow in the hippocampus — has been confirmed by brain imaging, animal studies and post-mortem examinations of human brains. It is now possible to track neurogenesis through scans that show increased blood flow in the living human brain.

So the hunt is on for new antidepressants designed specifically to maximise neurogenesis. Leader of the pack is a San Diego company, Brain Cells Inc , founded by academics from Salk and Columbia. After screening more than 1,000 chemicals for their neurogenic effect on brain cell cultures, BCI has discovered two drug candidates that are giving encouraging results in early clinical trials. One of them is a combination of two chemicals, melatonin and buspirone, which have little effect individually on depression or neurogenesis but work well together.  Although the first application of neurogenesis will be depression, it may be useful for treating other brain conditions.  NeuroNova, a Swedish company, is testing two protein drugs that stimulate neural growth in patients with Parkinson’s and motor neurone  disease. Syngis Pharma of Germany has started a trial of a growth-stimulating factor that is injected into the brain following a stroke. Animal experiments show that it might both reduce cell death immediately after the stroke and then help blood vessels and neurones to grow, reducing the patients’ long-term disability.

Another intriguing possibility, says Carrolee Barlow, chief scientist at BCI, is that stimulated growth of the hippocampus will improve memory and cognition in diseases such as Alzheimer’s.

© The Financial Times Limited 2010

The ‘lesser’ among the less privileged

Mental illness in India has a huge taboo, ignorance and terrifying superstitions attached to it. The memory of Erwadi, where 27 women with mental illness were charred to death as they were chained to their beds while the building they were in caught fire is long forgotten. While the fate of mentally ill people continues to be dismal, Dorodi Sharma of D.N.I.S. takes a hard look at the debate raging in the Indian disability sector whether or not mental illness should be included in the National Trust Act.

The Indian disability sector has many things to be proud of. Like the paradigm shift from charity and welfare mindset to a rights based attitude towards disability. Or the shift from the medical model of disability towards the social model. Even the whole mantra of inclusion, for that matter. But despite these evident paradigm shifts, there still are many things that we cannot be proud of. The condition of people with mental illness for example. Or the segregation that they still face. And segregation not only from the rest of the society but also from the so called champions of ‘inclusion’ within the disability sector!

If one goes by statistics, at any given point of time, around 5 percent of the country’s population is afflicted with mental illnesses. The change to a rights based outlook also brought about rights based legislations. While people with physical disabilities got the Disability Act of 1995 and those with autism, mental retardation, cerebral palsy and multiple disabilities got the National Trust Act of 1999, people with mental illness continue to remain ‘invisible’.

There is a huge stigma attached to mental illness in the society. The fact that a person has mental illness not only makes him or her an outcast in the society but also ostracises his/her entire family. While the Disability Act ensures job reservations for people with physical disabilities, people with mental illness run the risk of losing whatever employment they may have if their condition becomes known!

From small towns to metros, how many of us have seen mentally ill men and women roaming the streets and obviously vulnerable to exploitation? How many of us have read about people with mental illness being locked up like animals? Despite the undisputable fact that it leads to such obvious ‘handicaps’, this is what President, Parivaar, J.P. Gadkari had to say. “Mental illness is not a disability; it is an illness, a disease. It was a mistake to include it in the Disability Act!”

However, mental health activists strongly differ from this point of view.

“If you compare autism, cerebral palsy and treatment resistant mental illness, they all fall in the same category and need guardianship,” said Akhila Charagi of Nodal Association for Mentally Ill (N.A.M.I.). Gadkari feels that people with mental illness already have the Mental Health Act of 1987. In doing so, he neglects the fact that this Act is a medical one and not a rights based one.

While the National Trust provides guardianship and supported decision making structures, there is no legislation or statutory body at present that provides this to people with mental illness.

“Where do mentally ill people who are thrown into the streets – women, elderly, men included, go?” questioned Charagi. “Is anyone trying to understand the enormity of the problem?” she added.

So, why is there such a resistance to including mental illness in the National Trust Act?

“It is probably because the leadership of the intellectual disability sector is feeling threatened and believe that it will reduce their cause,” said Charagi.

Or, is it because of the Rs. 100 crore corpus fund of the National Trust that a few already in control do not want to share? If so, then all the paradigm shifts that the so called disability sector leaders do not tire of crediting themselves with, will come to a naught. If so, then the sector will be pushed back another 20 years, when cross disability was unheard of and each disability would look at the other as a possible competitor for grants and money. And if so, then it would be nothing short of a travesty.

In the last few months, the demand to include mental illness in the National Trust Act has become louder. Along with this, the pressure on National Trust to not include mental illness is also increasing. The National Trust has more than 800 N.G.O.s registered under it and all with voting rights. Apparently, these organizations are pulling the strings real hard, especially with the elections to the Board being in process! Although organizations working for mental retardation, autism, cerebral palsy, etc., vehemently refute this allegation, popular feeling in the sector seems to be telling a different story.

Disability sector leaders opposing the inclusion are now engaged in futile academic delusions and discourses which serve no other purpose but fill reams of papers with tongue twisting words and irrelevant information. And while the debate rages on, the National Trust has put up an opinion poll on its website with the question “Should National Trust Act include mental illness?” This has left people fuming.

“Is this a cruel joke or is it supposed to be a participatory exercise? It is a discriminatory question. It is against the spirit of U.N.C.R.P.D. National Trust is not an insensitive television channel. Fate of people with mental illness has to be a considered legal and policy decision and not the outcome of some public voting,” said Dr. Achal Bhagat, Director, Sarthak, in a strongly worded letter to Poonam Natarajan, Chairperson, National Trust.

Will the National Trust not include mental illness under its Amendments if there are 101 votes opposing inclusion against 100 votes advocating for it? And what about engineered votes? While the jury is still out, it is time for the disability sector to introspect. We lament the lack of inclusion in our society but have we risen above our own inherent prejudices? We talk about U.N.C.R.P.D. and jargons like ‘inclusion’, ‘social model’, etc., but have we ourselves moved beyond ‘We, the hearing impaired’, ‘We, the visually impaired’, and so on to ‘We, the disabled people of India’?

We want to be safely cocooned in our own bubbles, afraid that the other would take away our share of the pie. Isn’t it time for us to demand that the ‘pie’ be made bigger?

Yes, indeed it is time. Time to rethink, time to be less hypocritical and time to practice what we preach. After all, the only place a myopic vision will take us is a place the sector has been through decades ago. And a place no one wants to be now!

DNIS