In State Care, 1,200 Deaths and Few Answers

In New York, it is unusually common for developmentally disabled people in state care to die for reasons other than natural causes.

Comments: 125

  1. As a nurse, my hair stood on end as I read this story. Needless deaths of our most vulnerable citizens. It. has. to. stop.

  2. I do not understand the sentence..."it is unusually common for disabled people to die for reasons other than natural causes."
    Please clarify

  3. Please keep up the coverage.
    Change will not come about without oversight agencies doing unannounced site and group home visits.
    The provider agencies cannot police themselves. Staff dare not report problems for fear of reprisal.
    And what of the reports to the NY Attorney General's office regarding abuse and fraud over the years that went ignored????

    Also, care in CT has deteriorated considerably the past few years, and is far from meeting established standards of care and safety. Just in this recent snowstorm, clients were neglected and put at great risk.
    Reports are ignored, and reporters ostracized.
    Audits are needed of client funds. Clients are fed pasta every night while the staff take home the steaks.

  4. We need an oversight committee that reports yearly results.

  5. Kind of like in old Germany - 'useless mouths' not wanted.

  6. I recently drove past the site of the fire in Wells, NY. It reminded me of the day I experienced the Dachau concentration camp. The sense of abandonment and hopelessness was overwhelming. Our most vulnerable citizens are being put at great risk by our bureaucrats, who obsess over getting re-elected, but ignore this grave issue. Let's release the partisan-based funding being targeted for the myriad of unnecessary mandates and for our legislators' unearned per diem payments and instead use that money to support the needs of those who cannot speak for themselves.

  7. This has been going on for generations. My great grandmother died within one day of being sent to a NYS home. How? There was never an investigation.

  8. I recall reading detailed reports by the Commission on Quality of Care of rates of restraint in psychiatric hospitals and on suicides in hospitals and community programs, all of which were very influential in changing practices and reducing deaths. Why hasn't this type of analysis and reporting continued? Is this one of the side effects of budget cuts in the name of less government?

  9. Two prpblems: First is shipping ma, pa or the disabled relative to someplace else for someone else to take care of; Second is getting cheap help to care for ma, pa or the disabled relative so you can go on living the life you want. "Hey, you charge what...?

  10. It's all about money. what happens to the disabled is related to the consequences of health care for profit, which affects another segment of society. its about denying people proper care so that the service can be provided for the least possible cost-in the case of state run facilities--or providing millions of dollars in profit for owners of health insurance companies that limit or deny care to their subscribers. this is a big issue, who wants health care reform that addresses the larger problem? and how we care for the disabled?

  11. My wife is from the Caribbean, where their culture regarding the parent-child relationship differs significantly from ours here in the United States.

    Just the other day, my wife told me about a man she knows, originally from her home country, who has lived and worked here for many years and is still working into his mid sixties.

    This man has a 30-year-old daughter who lives at home with him, works full-time, and yet pays nothing towards rent (mortgage) or any other household expenses.

    Recently, the daughter went to her father and told him he should think about retiring. She said to him, "Daddy, you've worked hard your entire life and taken care of me and your family. It's time for you to retire, stop working, and let us now take care of you."

    The man's last day at work will be sometime before year's end.

    Guaranteed - this man will never spend a day in any type of home or facility for the elderly. While he is still in excellent health now, he will be cared for by his family for the rest of his life with love, kindness and gratitude.

    My wife tells me that in her culture, it is an honor to be able to take care of one's parents as they move into old age or otherwise become unable to look after themselves.

    Whenever I show her a story such is this, she always replies - "Only in this country do people view the caring of their elderly parents as being a 'problem' which needs to be solved."

  12. Glad someone is looking into this; apparently the elected representatives have other things to worry about that the most vulnerable members of their society - children, elderly, and disabled residents.

  13. Very sad story. Thank you for bringing attention to this. Some tragedies can be averted by better training and uniform standards, etc. But in cases where the cause was,for example, leaving the kitchen door open by mistake or leaving the water running in the bathtub when it should not be, one wonders how much fewer such accidents would happen if the facilities were adequately staffed and the caregivers were less stressed.

    If I had a family member in a home, I would want to make sure the caregiver was extremely well qualified. In my opinion, the best way to do this is to raise the salaries and benefits of caregivers, thus increasing competition, and allowing group homes to pick the best to be employees. Of course this takes money, but money spent where it should be spent-- on the people most directly responsible for the care.

  14. Danny Hakim's series should oblige one and only one conclusion: society wants these people to die.

    We get what we want - and we have organized to put these poor souls in harms way, deliberately.

    We staff these places with people who could not care less.

    Their relatives can say what they will. How many of them fight to obtain what's right for their discarded relatives?

    And, in the last analysis, when times are tough, who truly cares what happens to these people?

    The New York Times can run this series for a year, weekly. In my view, nothing will change.

    We have the system we want. We hire those who cannot get other work. The state's elected know that they do not vote -

    New York is run by Albany, which is run by Manhattan.

    Have a look at what Manhattan has done via the Adirondack Park Agency to those who live in the park.

    Study the park. Study APA. The treatment of the people of the park aligns with the treatment of those in these homes for the retarded and handicapped.

    New York State is about money and power, about principal, not principle.

    We do what we do, and have what we have, because we are what we are.

    Danny Hakim will not change this element of state government - and he will not change Cuomo.

    We can put lipstick on a pig, but the pig will still be a pig.

  15. We have the same problems in Ohio. Just a couple of years ago, a developmentally disabled resident in the city where I live died. He was in supervised living. When the EMTs took him to the hospital, he was found to be filthy and suffering from neglect. Yet, the county board responsible for overseeing the private agencies that care for the developmentally disabled listed his death as natural causes. Its all too common. The state of Ohio treats the developmentally disabled like so much livestock. The bureaucrats are more interested in suppressing any problems then investigating them. Come to think of it, more effort is made to keep livestock from being abused and neglected.

  16. This is more common than anyone would want to admit, everywhere. A friend of mine lost her beloved son this way in Md years ago. He was obviously raped and murdered, and her only compensation was $10,000 after spending her total earnings seeking justice for him. She was poor to begin with, and of course, remains that way. Her life is surrounded by ignorance and violence, as she struggles to keep the high road. In every way, society preys upon her vulnerability.

  17. As long as we regard the unattractive vulnerable adult as worthless and employ others we regard as worthless to care for them this will continue to happen.
    As long as providing care to others is seen as menial work this will continue to happen.
    As long as we fail to scrutinise the way we care or fail to care for each other this will continue to happen.
    As long as we are afraid to question bad practise and cruelty when we witness it this will continue to happen.
    As long as we buy into the fallacy that training not attitude will make it all better this will continue to happen.
    As long as our care for other human beings is reduced to the level of a financial transaction this will continue to happen.
    As long as the authorities turn a blind eye this will continue to happen.
    As long as we refuse to share the responsibility and cost of caring for the truly frail among us this will continue to happen.
    As long as we persist in disrespecting, demeaning and abusing our common humanity this will continue to happen.
    As long as we deny our own guilt this will continue to happen.

  18. It would be interesting to know if there is a difference between state run homes (and unionized employees) and the home runs by "non-profit" companies. The article seems to suggest there is no difference: "At homes operated by nonprofit organizations, low-level employees were often fired or disciplined, but repercussions for executives were rare. At state-run homes, it is also difficult to take action against caregivers, who are represented by unions that contest disciplinary measures."

    Firing an employee is not a solution to these systemic problems.

  19. Shame on NY officials in charge of oversight of these homes. Shame on the home administrators and shame on the workers who do not adhere to the rules that protect these most vulnerable individuals who can not care for themselves. It seems there is also an obligation for the families to visit their loved ones often at various times and report any actions that may endanger the home residents.

  20. Someone commented that this has been going on for generations. But of course.
    Someone else commented that the problem is in "shipping off" unproductive family members into institutional care. Nothing new about that, either. But fewer and fewer families can afford a non-working family member, let alone paid help.
    I'd really rather die than live in one of those places. Wouldn't you?
    Nothing will change unless we radically restructure public funding so that families can realistically care for the old and the infirm at home. That isn't gonna happen in any foreseeable future - voters aren't exactly buoyed on a wave of collective compassion just now. We simply become a crueler nation as we tumble, and stupider. Don't imagine that you might not end up in one of those joints. You won't much like the minimum wage staff who actually run the floors, or the cost-cutting measures that actually determine your level of un-care. Look your own child in the eye; there's a vulnerability that you maybe can actually feel. And really understand how urgent it is that we undo the corporate government racket that so gently and amply cares for the chosen few, at the expense of the rest of us, in this and a thousand other ways.

  21. I once visited, somewhere in Europe, a permanent place for patients who just would never recover from their disability - including my 85 year old uncle who severely suffered from Alzheimer. During a brief moment of clarity he told me that he just wanted to die, to move on, enough is enough. The nurses however were highly professional and he lived another 2 years and then a doctor said you look so tired so we will give you some sleeping pills. You need some rest. He was dead in less than 12 hours with a smile on his face. Certainly an unnatural death but a godsend never the less.

  22. Excellent article. Government funds would be better spent on providing training, equipment, and respite for catastrophically disabled people to be cared for in their homes.

  23. Though not a defense for these deaths--before we judge these workers--try to put yourself in their shoes. Most of these patients under their supervision are very physically and or mentally ill and working in that environment continuously can cause burnout. I am sure they are not that well compensated for what they do as well

  24. This population of vulnerable people are exploited extensively by a medical community earning millions/billions to care for them.
    Most of the clients are on both Medicare and Medicaid. With little to no oversight, greedy and unethical physicians refer clients to many specialists unnecessarily. Clients are given false diagnoses and subjected to uncomfortable, costly tests; and then given medications and medical equipment they do not need. It is then all billed to Medicare & Medicaid.
    Fortunately, there are a number of excellent primary care physicians who do a superb job in providing comprehensive and compassionate primary care.
    The deterioration in the care of people with intellectual and physical challenges is reflective of this country's deteriorating morality.
    Those who cannot produce, compete,and add to the bottom line are viewed as burdens on society.
    The sad truth is, this population often possesses in abundance what no amount of money, prestige or power can secure; pure and unselfish love.

    So what is the plan Governor Cuomo to really address the problems? Have you the courage to hold CSEA accountable, or is the union vote more important?
    Why are the very people in the NY Attorney General's office and Health Department who did nothing when informed of serious problems, still being paid by NY taxpayers?
    Today is Sunday, usually the day our Senator Schumer uses for photo-ops and to make some announcement stolen from the headlines.
    What say you Senator about the abuse and neglect, fraud and waste?

  25. I would be interested in knowing whether the states that stastistically do a better job have "systems" that are as diffuse - part state employee staffed and part farmed out to an assortment of private organizations - as New York's; I doubt it. I put system in quotes because the thing that stood out to me in the article was that there are so many entities to supervise and oversee care of the institutionalized disabled that in fact no one entity is responsible. Changing this will not be easy but until there is an organization chart that includes all workers and is topped by an executive with operational authority, not much will improve.

  26. Each of these deaths are heartrending. I doubt anyone within the agencies represented here in your article, would try to justify their deaths. The hard facts are care is extremely expensive and we have limited resources. In Illinois, which is ranked 47th in per capita spending for individuals with developmental and intellectual disabilities, my agency provides services to individuals with a wide range of abilities within the budgetary limits of the state. We receive 82% of our funding from the State and we must seek grants from corporate foundations, and charitable trusts and individual donors as well as local, state and federal grants to meet the needs of proving adequate housing and day services, job placement and job coaching programs, life skills and enrichment services, heath, dental and vision services, and more. My social service agency is well run and works hard to provide services so people with disabilities can live full lives as much like their neighbors in the community as possible. They are intimately aware of the difficult behavioral issues that have contributed to the some of the deaths that I have read about here in your series of articles as well as the supervisory issues related to individuals who are severely disabled. Many of the individuals who work in our nonprofit agency have family members with a developmental disability and their passion and compassion are exemplary. They contribute to an atmosphere of nurturing care within my agency. All staff is well trained and monitored to ensure care is consistently given. At the same time, we are not granted the luxury of over-staffing to provide overlap which could provide for these situations you describe. You may not realize that the direct care staff are among the working poor in most cases and work two or three jobs to make ends meet. Sadly, given this equation, many times, this leads to increased deaths. Fortunately, given our vigilance, our agency is blessed with high ratings by all accrediting agencies due to the exceptional care we deliver to our participants. With the nation's and states' budgetary issues leading to cuts in service dollars for individuals with disabilities, it is unlikely that more training or more rules will decrease the number of deaths like you have listed though. Unless we are able to fund services for people with disabilities, good training, good intentions, mindful oversight, etc. will not be enough. That's why I ask, what is the comparison of funding for people with disabilities in CT vs. NY?

  27. jm, have you ever had to make the decision? It's not to go on "living the life" our family wanted. Sometimes family members don't have the money to make a house accessible, to afford a van that can transport a wheelchair, or the ability to stay at home (not work) and provide the round-the-clock care people with severe disabilities need. What should my single, 61-year-old mother do to care for my now 40-year-old brother? She can't lift him to go to the toilet or into his bed. She has to work during the day to pay her bills. My brother lives in a wonderful home where he lives with his peers, and has excellent social and work opportunities, as well as medical care (and staff who treat him like family). We remain an active, involved part of his life, my mom talks to him every night on the phone and he comes home on weekends. Don't be so quick to judge. Some people with disabilities don't have any family left. ... On another note, thank you very much to the NYT to devoting the resources to continued coverage of this issue. It's truly heroic to give a voice to people who do not have one. It's journalism at its core, and at its finest.

  28. It's the social worker programs in States and their hohum education!
    These Universities give out Masters Degrees in Social Work like jelly beans at Easter. Anybody can get them, and then immediately get a great paying Union job in government with outstanding benefits, and not one shred of common sense!

    This must end before any progress can be made. it is literally the blind leading the blind.

  29. As ever the NY Times has focussed on a problem in our system of care for the disabled and the aged. There is an urgent need for continued oversight.
    It is important we study European systems for treatment and care of our disabled and aged. Reports are that most European countries are able to attain improved quality of life and longer average life spans.
    America needs to catch up.

  30. Maybe more families would comnsider taking care of their own if there were much more help available. Also one commenter was judgemental about this. Sometimes a group home is the only way a person can have the help and support that they need. The quadriplegic who drowned in the tub after a neglectful helper let the water rise over his head, was not a person who his family could have cared for without great difficulty, even with help from the state. That group home was an alternative that should have been safe. Individuals who work in group homes are underpaid and treated like the floor help at a badly managed walmart; their bosses are inconsiderate and often cruel. No wonder the staff are often incompetent. I would not wish the choice to send or not to send on anyone. The bottom line though is that for many disabled the group homes offer a level of care that a family home, unless they had an in to an endless supply of money, would not be able to provide. Take the handicapped accessibility as an example, to retrofit a house can cost 100s of thousands.
    But, don't think the for profit agencies are providing anything even close to state of the art for their patients. These companies are provided insurance company payouts from MEDICARE and MEDICAID, these are taxpayer dollars, even HMOs for the poor have premiums paid with taxpayer dollars and on every level of each transaction with these monies, a profit margin is siphoned off. The monies left after the profits are paid to the CEOs of these non-profits and the paychecks to the higher level management and then the badly paid workers is not much and not near enough to maintain buildings and have proper modifications for specific physical problems such as quadriplegia and other common conditions in the disabled. These peoples needs simply are not being met and it is time that government took back the peoples money and deprivatize these homes. Government can do a much better job and for the same amount of money.

  31. It will make sense to spend the US$ 10 Billion and employ the relatives of Disabled persons. If these relatives are trained and employed as care givers there will be far less deaths. Also these relatives normally have some feeling and responsibilities than the normal guys towards the disabled persons.

  32. 1. There is money to be made here and someone is making money. Things like training and quality controls cost money and reduce profits...thus, we have lack of training and lack of QC.
    2. Lack of standards and accountability. You can't have accountability if no one captures and track metrics using standard methods. Sounds like those making profits don't want standards or accountability...
    3. Unions. Unions were the answer when workers had no voice. Now, it seems that, at least in the public sector, mgmt has often has no recourse. Balance is the key and in NYS the balance seems to be lost. Union workers need to do some soul searching regarding the balance between quality of service and protecting workers who don't deserve protecting. It will benefit them in the long run.
    4. Are group homes a good answer? I'm not sure that group homes are the answer...maybe they are, but then again, what are the costs, risks and one seems to have even asked these questions.

    The overwhelming message in this article is that the quality of service and value of the whole business model are questionable at best. Does it make sense to do this this way, or is there a better model for providing care for these people? Big institutions? Home care? Day care? Family contribution/participation?

  33. I recently watched my aged Mother take her final breaths. Wife and I provided care for her last year. Caring for the helpless among us serves to define our humanity. Professional help through assisted living and nursing homes make things easier, but the kindness and dignity we offer to the process does in fact say something anbout us as individuals.

  34. Perhaps this problem cannot be solved by raising taxes to increase state spending on this.
    Maybe if we did not fund these warehouses for the elderly and disabled individualized solutions would develop.

  35. I regret the loss of life for any reason. What is inexcusable is people of various agencies making excuses or passing the blame. It should not be the responsibility of a state agency telling others what to do right and yet the state has the obligation to the public for accountability of funds and life. I applaud the investigative reporting however, it is truly unfortunate that it takes the media to shape the policies and actions of those charged with supporting people with disabilities.

  36. It was an honor to watch my grandparents take care of their son, my uncle, who was born with Down's Syndrome. He was born in the 40s and it was recommended that he be institutionalized. My grandmother balked and he was able to live to be 60 years old. Had he been in one of these institution he would have been dead long before.

    We have marginalized these very fragile members of society. First and foremost we hire people to care for them who have not demonstrated the best choices in society. In addition, the wages are woefully low and there is significant staff turn over.

    It is a civil right to be cared for with dignity. It is a civil right to be treated and cared for within the scope of human decency. And is the duty of all to report abuse and protect these CITIZENS.

  37. Yes, lets do that; blame everything on a non-existant entity. This "entitiy" exist only in the minds of human beings who probably should be institutionalized. Time to take responsibility for what we do and say. Enough already.

  38. no.9 JM who thinks the problem is shipping ma pa or disabled relative for someone else to look after - outrageous comment. Not everyone does it to live the high life as this person insinuates. Sometimes there is no alternative, lucky you if you have the resources and help to do this, most don't so don't get smug and blame the victims' families. Give them the support instead and maybe many more disabled would stay at home. .
    The problem is society not caring enough about the vulnerable to allocate enough funds to qualified well paid staffing - one staff to look after 11 at night in the drowning case - and to their training. And of course people like jm who believe families are an island unto themselves and not part of the greater community.

  39. Unfortunately, this is one of the major reasons why these days some parents of disabled children kill their children and themselves.

  40. If they paid caregivers higher wages and required a higher educational background, the patients would receive better care.

  41. Not buying, sorry. Seems the standard pressure group generates doubtful statistics but interests a sympathetic reporter kinda deal. Times are hard, but we do not have the money to give them all they want and also cover the other hundred thousand newly defined as "autistic".

  42. I agree with jm/Morrisville PA. How can anyone claim the disabled/elderly are put here for a reason by God to teach us humanity, then put them in a home for 'care' by strangers?
    Having had a parent with dementia, I fully comprehend the need for homes when the caring for the individual becomes crushing but I cannot understand the relevancy of the above sorts of comments.

  43. During much of the period discussed in this article the Department's Secretary was Diana Jones Ritter. Diana Jones Ritter is now "The Managing Director" at the NYS MTA--she effectively runs the organization from what I can decipher from the agency's organization chart.

    I have no personal animus against Ms. Ritter. She may be a wonderful person. But will no one ever hold her to public account for the way she ran a department that has been the subject of scrupulous investigations that demonstrate malfeasance, negligence and criminality during her tenure there?

  44. This is terrific reporting and as noted in the article NY Times investigation has brought attention to the neglectful treatment of a completely vulnerable population.

    I dont' understand why deaths for "unknown" causes are not investigated as possible homicides. Isn't there a role for police departments to investigate when a cause of death is not clear. How do the police get away with neglecting these cases?

  45. @Mario - Disabled people in the care of the state rarely die of natural causes - someone other that nature is responsible for their deaths. think negligence. Now can I go read the article?

  46. I started doing a little bit of volunteer visiting and ran into a resident who cried to me that he was being emotionally battered by a caregiver. I was new and unsure whether or not I was mandated to report, but I did it anyway (to the institution). They were all smiles about it and thanking me, etc., but it didn't take any time at all for that same caregiver (it could only have been her) to begin treating me the same way. Now, I am made to feel so unwelcome there that I have stopped going. And this was a very high-brow (small) chain institution. The families affected have my deepest sympathies. When will the day come when people just chose to do the right thing regardless of whether they feel like they get paid enough to do it? And others stop marginalizing the right-doers for "making the rest of us look bad"? Thank you for this eye-opening, albeit depressing, article.

  47. Thank you for bringing the potential for abusive care of the disabled to the public's attention. Investigative reporting like this is truly a public service. People who can't defend themselves need advocates.

  48. With that many people in the system, seems like the Director and the Board of Directors could be made up of parents with relatives in the system. Then at least the top management would have some skin in the game.

  49. We always want to blame someone else. Why don't the people who brought them into this world take care of them, why must it always be the state. They want them to live forever, as long as someone else takes care of them. Then they can blame the government for not doing enough, along with their attorney.

  50. To No. 9 -- not everyone has the physical capability to care for a disabled family member. And not many can afford to pay for a live-in caregiver (sometimes more than one is necessary). The state spends $10 billion a year to help these people, yet it seems that most of the money disappears into the ether and the innocent victims are suffering and dying. This is a travesty and I'm glad the NY Times is reporting on it.

  51. Sorry but this poor people are'nt meant to live with these severe problems. They should all be DNR/DNI, yet families refuse choosing instead to keep the hopeless alive in horrible situations. The DDD agencies have an agenda to keep their census up. Those poor souls cost the taxpayers huge expense. And the uninsured adults have no chance and they contribute to society. A DDD bedridden person should not get hemodialysis. But they do. This may sound harsh, but the pot has a bottom.

  52. This will never be stopped as long as caretakers for these people make ten bucks an hour while the executives in charge of the organizations running these programs make hundreds of thousands of dollars a year.

  53. One of the huge problems encountered and observed.... these social workers degreed or highly degreed mostly go into the field because they had issues in their lives and do not know how to deal with this. They want to help but never rec'd the appropriate help themselves and felt redeemed through education.

  54. "One summer night in 2005, a worker lowered Mr. Taylor into the tub, turned on the water and left the room. Over the next 15 minutes, the water slowly rose over his head. He drowned before anyone returned."

    Pretty shocking. How could this be anything other than criminally negligent?

  55. The article states: "There is no question that it can be extremely challenging to care for the developmentally disabled, a population that includes some people who are fragile and immobile and others who are unruly and inclined toward violence." Is it that hard to make sure parapalegics don't drown in bathtubs and that disabled folks who don't know how to pace their eating don't have unsupervised access to food? We have no soul in this country.

  56. Thank you for this in-depth coverage. Caring for people with developmental disabilities is hard work. However, it is imperative that we have policies and training in place to insure that they are properly cared for and when they die it is the state's responsibility to fully investigate, and review any policies that may have contributed to those deaths.

  57. Patricia Taylor nailed it- our humanity is measured by how we treat the least of our brothers. Sufficient resources, regulations, training of workers, oversight, transparency and accountability are necessary tools but so is promoting a culture that makes it clear that compassionate, quality care for the elderly, sick and disabled is the highest calling of a civil society. I would like to see an organized effort to promote a "good neighbor" policy for the communities in which a home for the developmentally disabled is located (or nursing homes or other similar settings). Working with the sponsoring agency, community groups and individual volunteers could help be the eyes and ears to make sure the residents are being well cared for and could lend a hand to help keep these residents safe and their quality of life high. Even the best run homes could use neighbors to stop in to say hi and see if there's anything they need or a resident who might benefit from a cup of tea and some companionship. Small kindnesses mean so much to this population. I applaud Governor Cuomo and the Times for this focus. Please keep it on the front burner and the front page.

  58. Attention to our developmentally disabled citizens has never been more important in the last forty years than now because of the temptation that uninformed or thoughtlessly abled peopled combined with severe budget restraints might have to chip away at state funding for persons under state institutionalized care.

    This article sadly recounts the deaths that have already occurred where more robust training and a commitment to codes that would have cost money might have have made all the difference. Should we, abled citizens of New York, allow for a further deterioration of that care because we can not afford it or because the people who live the line item on a state budget cannot possibly speak for themselves? We all would bear the responsibility for the increase in suffering or deaths that in all probability could result for the failure to provide proper funding and support.

    This article is timely.

    And some of the comments (with many "likes") are telling.

    "Ma" and "pa" are not a part of this story; these individuals are so profoundly developmentally disabled they are never parents. Most of these citizens have mental abilities registered in months, not years. Let's not confuse an already deeply misunderstood population with the public policy questions about how we care for the elderly without resources.

    Moreover, the term "disabled" covers such a broad spectrum as to be deceiving in this discussion. Students at Ivy League institutions might be disabled due to blindness or dismembered from military service, for example, but they are not the people to whom article speaks. It is a shame that more abled people do not take the time to become more informed about this population in order to use compassionately the intelligence that they have rather than express views in ignorance.

    Developmentally disabled people are a barometer to our society's intelligence's quotient, they are a mirror to us all.

    My counter question to 'jm" is "Civilization for what?"

  59. Let us get real about care of the profoundly disabled. The reason families consign these members to stranger-care is because caring 24-7 for a physically and/or disabled person is grueling, constant work with little reward, and it sucks away the life of the "normal" caretaking family member.

    Unfortunately, stranger-care pays very little to the actual caretakers whose tasks are demanding and grim.
    I would like to see one of the high-flying Wallstreeters or one-percenters, who justify their outrageous profits by saying they do the most important work of our society, spend one work week as a caretaker of the profoundly disabled, for a standard paycheck. Which job do you feel is the most difficult? Sitting in a comfy office shuffling paperwork, or hands-on care for the disabled? Which deserves the highest monetary reward?

    If we wish proper care for the profoundly disabled (which includes senile and bedridden elderly) in stranger-care institutions, we must be willing to pay a high wage to those who provide this care, and provide a less-demanding work environment so they are not overwhelmed by patient load.

  60. I commend the Times for covering this important issue and for highlighting the plight of some our most vulnerable citizens. As a lifelong resident of New York State, I am appalled at the state's mismanagement of these cases, the needless suffering of the disabled and the subsequent anguish of their families. I hope that continued coverage on the part of the Times will push the state to make changes in how group homes for the developmentally disabled are managed.

    I think that the advocacy and dedication of Joan Taylor, the 86-year-old woman whose son drowned in a bathtub in his Schenectady-area group home, is remarkable. It is sad that it took a tragedy to bring about part of her advocacy work, and this type of bereavement is something that no parent should have to suffer.

    I also must say something to the individual who left comment #9 on this forum. There is indeed a problem of "cheap care" in these group homes in the sense that many of the staff members are woefully underpaid and lack either the education or experience necessary to deal with these challenging populations. In addition, many group homes are located in economically depressed areas of the state where other job prospects are few and far between. It would be in your best interest to read previous reporting done by the Times in this series, some of which highlights this problem. But to say "cheap care" provided by "someone else" allows the families of the disabled to live "the life you want" is absurd. One must only read about Joan Taylor to understand that the decision to place a loved one in a group home is wrenching and often one of last resort. The care depletes families emotionally and financially. Few people can afford the specialized care they would so prefer to give their vulnerable loved one. Hence, the looming specter of the group home becomes a reality. These families aren't doing this so they can go live the life of Riley. They're doing it because they have no choice.

  61. It is called "polypharm" when people are so medicated you can't tell the difference between which handicaps
    are from the side effects of medication and which are from the pathology of disease. The effects of medication are not making our country as well as we would like for sure. Profit based medicine leaves plenty of wiggle room for prescriber protection. It leaves little wiggle room for brain numbed people. No one should die for such a system to stay solvent. I hope you print this because in a flash that man could be you. You will feel like Greece does today, hemmed in to a death defying place. Mercy is not just a name. It is caring about what works for all and that comes from provable truths. The provable facts for you, me and all of humanity's future. Truth is that important. Ignoring it leads to ashes. Please help change things don't work. Value people first, not set ways. Maybe the workers wouldn't be so worried about loosing their jobs they fail at saving others.

  62. Thank you for your continuing investigation and reporting, it is much needed.

  63. This is really disturbing. And hey, jm, did you not read the article? I, for myself, sometimes speed read articles and miss the details. I wonder if this is what caused your comment?

  64. Americans don't take care of their people. Money is more important.

  65. The situation is outrageous, of course. Thank you for reporting that might bring about reform. But your closing and NY Times quote of day "“I believe that God put these people here for a purpose, because if we didn’t have them to look after, we would lose our humanity,” she said." is also outrageous. What kind of God, philosophy, individual would create or want people to be severely disabled, to be here for the purpose of keeping us human or testing our humanity?

    In some cases it would be the religion and/or law outlawing even early term abortions in predictive cases that "puts them here."

  66. I left NY when i was 22 y/o. Guess that was a good move since I'm almost ready for a nursing home.

  67. #9 jm sees the problem as shipping off your disabled relative so you can live the life you want. That statement shows a lack of understanding of why homes for disabled persons exist. Usually the "life you want" means being able to work, since if your disabled relative requires full time care (as did the people in this story), you can't go to work, so how will you support yourself & your family? And there are many disabled people who don't have family, or whose family isn't able to take care of them. The elderly parent of a 50 year old quadrapeligic isn't going to be able to provide the level of physical care that person needs.

    Unfortunately, the government won't provide assistance for caregivers in a person's home, which forces disabled people into institutional care. The real problem is the low pay and lack of training the group home or nursing home workers receive - here in Illinois all you need is a high school diploma, and the pay is about $10 an hour. Not that it's rocket science to figure out what "bite sized" pieces of food are, or to not ever leave a someone unattended in a bathtub. But the low salary and lack of training certainly contribute to the lack of professionalism of workers and the related dangers to the residents. It's horrible that the most vulnerable people in our society (people with disabilities, the elderly, and children) are shuttled into group care supervised by low paid, poorly trained workers, who receive very little supervisory oversight.

  68. To JM above, you can't just say the family should keep them forever -- parents get sick and die themselves. As a parent of a child with a disability myself, my hope is to live till 110 and to remain in excellent health so I can always take care of him but that seems somewhat unrealistic. Instead I'd like to fight for a better system in NYS. Where does all that money go? I'm sure there are people making a bundle off of this population as the rest of society doesn't seem to care. The answer is not budget cuts, the answer is real accountability from the state, but there's no great track record there. Courtney Burke you have a BIG job to do, I really hope you are up for it. Thank you so much NYT for covering this please keep it up.

  69. Keep up the good work, Danny and Russ. Keep speaking out on behalf of those who cannot speak for themselves.

  70. I congratulate the Times for its coverage of this nightmare; please keep up the good work!! In a country consumed with celebrity culture, this type of story reminds of the true value of journalism and the important role played by investigative reporting. Thank you!!

  71. “'These deaths are marginalized because these sort of people are not valued by society,' Patricia Taylor said."

    That says it all right there. As another person commented, dev. dis. people are perceived as "useless eaters". This is a perfectly rational term for a society that values people based on their employment and their ability to make money. Can't bring home a paycheck? Then what good are you? Why should you be kept alive if you cannot contribute to capitalism?

    I hope people realize that they, or their loved one, are only one car accident away from being severely cognitively disabled. The disabled are not some sort of closed-off population that no one can join. It is a possibility for all of us.

    But the fact that you or a loved one could be severely disabled one day should not be the only reason to care. Everyone has equal worth, simply by way of being a human being -- not by way of a paycheck.

    Having to need care can be terrifying, because you have no choice but to trust that your caretaker will treat you right. Will the water be hot enough to burn you? Are they giving you the right meds? Will you be picked up in a timely manner if you fall?

    I'd like to thank NYT for including portraits of those who have died, instead of simply faceless names and conditions.

  72. Thank you for publishing this report, which shows that there can still be real value in old-fashioned journalism. Hard to imagine bloggers having the resources to follow these stories up in such detail.

  73. Profit=greed=abuse

  74. Although I no longer live in the U.S., I still like to keep up with trends in education, health care, and justice in my country of birth. My heart greives at what you found. Yet as a resident of a country where this type of investigative reporting is seldom done, that you were able to investigate and question and that change is possible because of the care and quality of your reporting gives hope to those clearly in need. May the NYT ever coninue to fund the quality investigative reporting that you have done, and may the state of NY listen with ears wide open.

  75. jeez even dogs. cats, and mice know to run away from fire. what are we trying to accomplish? and each and every one of these "clients" should have "DNR" stamped to their foreheads.

    how does the third world deal with this, and can we please adopt some of their policies? i don't see them crying 'humanity where art thou?'

  76. Wasn't the Office for Persons with Developmental Disorders one of three departments from which Governor Cuomo planned to cut hundreds of jobs unless the union gave into him. Maybe someone should read that bible quote to him.

  77. You get what you pay for... if you are paying some nefarious owner of a private clinic millions of dollars in salary, then you know that he is cheating his workers out of pay and benefits. Cheated people do not have as much of a reason to do a good job.

  78. I'd be curious if the NYT authors or anyone else has stats on the National Averages. How states rank up etc. Is this data even collected and by who?
    1 in 25 Connecticut maybe be better, but is that really the best that can be done. Is there a state that has achieved better care? How have they done it.

  79. It is clear that the system in place in NY State to support people with Intellectual and Developmental Disabilities is in trouble. I will always look to Direct Support Professionals as the front-line and most important components of the support, care and safety for people receiving services and supports ANYWHERE in the state or country. It will not be new regulations, inquiries, fines, penalties and new administrative directions that ensure the dignity and safety of people in our public-funded support settings! The ONLY thing that will give a modicum of insurance that the people needing support will truly be treated with better service is to DEMAND that the people closest to them (The Direct Support Professionals) are well-educated, well-paid and given more authority in the daily actions they perform as professionals (NOT WORKERS)....A Professional acts with Ethics and Standards and at the end of the day is judged by their ability to illustrate their practice as a professional. New York has a tragically wonderful opportunity to be a champion for changing the national culture of treating the people who support people with disabilities as workers. Many Direct Support Professionals that I know are largely "workers" in a broken system. They are also very good and dedicated people who act with great care and good intention. Now is our time to move people from "worker" status to PROFESSIONAL status by virtue of a nationally recognized credential and the demand to have all DSPs act and be evaluated through the DSP Code of Ethics. Please contact the National Alliance for Direct Support Professionals for further information. Workers work a job....professionals practice a craft and a career.

  80. Where's the Catholic Church in all of this. I thought they were pro-life. Where's the message from N.Y.'s archbishop? Too busy butting into females lives? Come on, give us some meaningful pro-life yip-pap.

  81. The true test of a country (and it's people) is how they treat the most vulnerable of it's population.

    To JM in PA. Probably the families have to work to survive and care is not FREE.

    It can cost thousands to care for a person in group homes. It is not a free ride.

    For your sake (and certainly for your family members) I hope you never face this situation. The phrase : What goes around, comes around" ring a bell with you?

  82. How do we know the deaths labeled as "natural causes" were really "natural causes"? Maybe those should be examined as well...

  83. OPWDD corruption,fraud and abuse will only be curtailed when politicians, their appointees and agency managers can no longer be assured of the silence of public employees. Currently it is accepted practice for supervisors at OPWDD like Laurie Stander or Tara Willette at O.D Heck, with the assistance of the human resources office to retaliate against any employee who speaks out publicly to identify wrongdoing both illegal and immoral.
    Courntney Burke launched an " I SPOKE OUT " campaign to encourage employees to not hide information of wrongdoing but when actual whistleblowers come forward they face punishment ????
    Personnel Director JENNIFER HOERUP and Director KATE BISHOP blatantly ignored the most obvious claims made while working at O.D. Heck and the fallout was the JONATHAN CAREY incident....
    Instead of being punished (I FOILed both of them and there is nothing in employee files),both of these highly paid corrupt administrators were simply moved.....Jennifer Hoerup is now at Civil Service as Head of Staffing believe it or not and Kate Bishop is at 44 Holland Ave???
    New York needs a Public Employee Free Speech Law which expressely forbids retaliation against conscientious employees who publicly tell what they know and provides stiff penalties for violations. Retaliation is currently legal and accepted practice. Only when powerful figures can no longer count on their ability to enforce the silence of subordinates will the safety mechanism be restored. Until then...articles like this will be the result.

  84. Oh christ. Good, no great, work Danny Hakim and Russ Buettner. I hope this gets the wheel of change rolling.

  85. "But the problems in the New York system appear especially troubling given that the state spends $10 billion a year caring for the developmentally disabled — more than California, Texas, Florida and Illinois combined — while providing services to fewer than half as many people as those states do."

    I would say SOMEBODY is getting ripped off. Fire the lethargic Courtney Burke and hire Terrence Macy. The data on these deaths is there, handed to you by the NY Times. Use it to protect our most vulnerable citizens.

  86. It appears that a high price has been paid for deinstitutionalization from the ICF/MR system that once existed.

    No group home meets the standards for Intermediate Care Facilities for for Persons with Developmental Disabilities due to Mental Retardation (ICF/MR).

    The level of care provided by an ICF/MR would have prevented much of what was described.

  87. What do people expect? This is EXACTLY what happens when we scream and cry for "small government": reduced regulations, reduced oversight, and all-around quality decline. Welcome back to the 19th century.

  88. Danny Hakin should be a Director of a DDSO, because he clearly knows more about how things REALLY work than any administrators at the DDSO's or non-profits! Two things in the article particularly ring true. During OPWDD's investigation of the Wells fire, they focused on issues that had nothing to do with the fire; so typical of this agency. And, there is a clear pattern that the basic response to any significant problem is to fire or scapegoat lower level employees. Nothing ever sticks to upper level administrators. There are a LOT of good, competent, and caring employees and they are just begging for competent, decisive, and honorable leadership.

  89. The article states:

    "But the problems in the New York system appear especially troubling given that the state spends $10 billion a year caring for the developmentally disabled — more than California, Texas, Florida and Illinois combined — while providing services to fewer than half as many people as those states do. "

    This seems the crux of the matter. Where does this money go?????

    Surely, it should be more than enough to hire more staff members, and moreover to hire competent ones if you paid them more than a pitance. Oh, and to pay for training that last for several weeks instead of a few hours.

    So again, what happens to all those billions? In whose pockets are they disappearing?

  90. People with disabled or unwanted family members who are put into homes where the taxpayers are burdened with their upkeep are always complaining,yet they're the ones who first turned their backs on their children....people who are not going to contribute to society!Our resources are limited and should be used on programs and people that will ensure a future for everyone!

  91. Most people are not aware of the demands made upon the workers who constitute the portion of the system where the "rubber meets the road". Few , if ANY nurses, registered or practical, ever care for watch, bathe, feed or clean, the individuals who are left in the staes care and, who the state then contracts with expensive private care systems to do the "dirty work". The people paid and hired to do the actual work are earning not much more then they would in a good grocery store.
    As Jesus is supposed to have said, "Let he who is without sin cast the first stone."
    This is work no one else wants to do, and no families expect or want to have these people sent back home. This is the sad reality.
    Unlike the Leprosaria which once existed, or hospitals for those with other severe communicable diseases, the inmates in these hospitals are the most difficult to care for and current state demands would not want to spend an additional penny on them. I also suspect the numbers the Times obtained from other states were "cooked". NY is not that different from Massachusetts or Connecticut. If the editors and writers object to current standards of care so strenuously, let them quit their cushy jobs and go to work for 10 or 15 bucks an hour, and do this work themselves. Like Times reporters who have tried teaching school, I doubt the Times writers or execs would last a week.
    I may sound like a cold hearted fascist but I have seen these expose's come and go .In the end, little changes but a few nice sounding laws which often just make matters worse.
    Unlike most people, I have cared for sick and dying adult members of my family, as well as autistic kids. This is not a nurses job or a matter for a doctor's care. This is the most difficult and heart rending, as well as demeaning work we can ask people to do. Try doing it. You may see the other, caretaker's side of the problem.

  92. Perhaps James Taylor would have fared better if his family had accepted the burden of caring for him at home instead of passing that resposibility on to others funded, I surmise, at public expense. Then again, perhaps not.

  93. As a road salesman, I made it a point to call upon the maintenance people within the "insane asylums" located in those "out of the way" citys and towns I would otherwise have driven past on the Freeway...

    I was generally shocked by what I saw... Dark and Dreary, small hallways with low ceilings, and a vast number of cells... A prison by any name...

    I seldom met any of those people confined within...
    Surely governments watch carefully, don't they?

  94. Having worked with the severe/profound DD population in a group home setting for nearly 6 years I applaud the Times for shedding light on this atrocity. The issue of choking in the DD community is a huge one. Many of the consumers I worked with were on "special diets" ie. chopped 1/4 inch, chopped 1/2 inch, purred, pea size, soft mechanical, with Thick-It etc. There was NO real training for how the kitchen staff was supposed to prepare these diets and one staff member's chopped 1/4 was another's pea size. I had to preform the Heimlich on one consumer and there were numerous other choking/Heimlich incidents in the residence during my tenure there.
    In addition to the choking issues, this particular home also had issues with numerous clients falling, elopement (clients leaving the residence unsupervised), and unsafe conditions that did not meet the needs of the clients. The programs/goals were largely ignored and only practiced to the letter for about 3 months before our state audit was due. Three of the people I worked with lived through the hell of Willowbrook, have no family involvement and rely wholly on the staff of the residence for advocacy. Speaking as a former staff, I know that it is extremely hard to advocate effectively for your clients when the managers and supervisors of the agency want nothing more than to keep up their state funds on the increase and their overhead costs on the decrease. Thank you for exposing what many of us in the field have seen first hand. Thank you.

  95. The NYT should do an article re: the slashing of funding by NYS OPWDD to non-profits across the state...

  96. This is a larger problem than many realize. There are accidental and deliberate actions that result in deaths in nursing homes, hospitals and hospices. Plain and simple you can call them by any name you wish but those in the industry and the families that must deal with the loss of loved ones know the truth. Much like an overdose of propofal caused the death of Michael Jackson, it is just that easy to cause a death and those responsible never have to deal with it. The prosecutor was right in saying that the Doctor would never be on trial had it not been Michael Jackson and there is no doubt he is correct. Overdoses, deliberate or accidental kill people ALL the time and no one does anything. See Rudolph's response #25. Of course Rudolph and his uncle welcomed death but not everyone wants or needs to die because someone else decides it is time. Often a death is financially motivated. Medicare runs out, facility care can't be sustained, no where to place dump)the patient and the hospital can't rid themselves legally. Sometimes organs are harvested. Guess what happens! There is a dark sinister side of this story that isn't being told in the numbers in which it actually occurs. People don't want to believe that hospitals and rehabiliation or nursing homes kill people. Not the exception, death by caregiver is commonplace! Our state legislatures have allowed medical facilities anonymity. To protect the facilities, tort reform is being enacted to prevent the courts from punishing responsible parties. Most people fail to realize that the medical industry is not even required to disclose errors. Even when mistakes are discovered, as in the Michael Jackson case, the punishment is extremely light.

  97. So this is what we have to look forward to in New Jersey, since Gov. Christie ordered the closing of many of the developmental centers (which provide excellent care) by 2013. This is being done under the guise of giving the disabled the "freedom" of a "less restrictive environment." They are actually using the language of the IDEA against the disabled, who will now be shipped off to group homes where they will receive substandard care. It's ALL about the money.

  98. Didn't Native American cultures VALUE their "disabled" people?
    My understanding is that they were seen to have magical qualities.
    Those qualities clearly included doing something magical to draw out our own senses of compassion towards others.

    Get it together, New York.
    What a shameful record.

  99. Reading this makes me ashamed to be an American. We talk and talk about our freedoms and rights and yet our most vulnerable suffer as they have for decades. I am a social worker and see this sort of thing every day. Our chasing of the almighty dollar has always fueled our priorities as governments, but thankfully, not always as human beings. Thank you NYT for this coverage and please continue to print and post stories that put in our faces just where our priorities stand! I plan to continue to write to my congress-people and governor.

  100. One of the most important public policy debates today surrounds the issues of euthanasia and assisted suicide. We must revist this policy and make some serious adjustments to the way we live. 7 Billion persons on a dying planet. We must rethink Euthanasia, among so many other outdated human conditions to better improve and I dare say, a way to save our planet.

  101. Who needs death panels when you can just de-fund? The practice of "De-funding" should restricted by Constitutional amendment.

  102. We, in NC, sometimes hear about terrible things happening here but the dense population in the NYC area assures that more tragedies occur and the active reporting/commenting by NYT assures a constant diet of really bad stuff. Although it's depressing, we NEED it - thanks NYT!

  103. Many commenters focused on one factor in a multifactorial problem. I organized my mother's care for the last four years of her life, most of it spent going back and forth between hospitals, assisted living and nursing homes for "rehabilitation". I work full time, have a family at home, an inaccessible house, and -0- money for making my house accessible, even if I did have money for caregiver(s). The hours I spent driving between home, work and mother's latest location drained me financially and physically.
    It isn't incompetent social workers, neglectful nursing assistants, inadequate physical facilities, greedy home operators, Big Pharma, uncaring relatives or stupid regulators.
    The entire system needs an overhaul, and not just in NY state. There are examples in our own country of facilities that are well-run, adequately funded and even pleasant.
    Find them, find out how they do what they do, provide adequate funding to implement it, and tell home operators who can't comply that they are out of business.
    While you're at it, NY et al, tell your representatives in DC that you want reforms to Medicare that will help support families' efforts to care for their elders and disabled relatives in the home. The combined Medicare-Medicaid in-home-care programs are available to a fraction of the people who need them for their relatives whose care can be maintained at home.

  104. Why do such things not happen with such regularity in other industrialized nations? There has to be something about Americans that they are unable to care for each other and run a stable, smoothly functioning society (and that includes its government functions).

    There is something deeply wrong with American culture.

  105. I admire this reporting and the prominent placement to help the awareness of this issue. My uncle, who was mentally retarded and had down syndrome, was taken care of by many family members until being put into a small home around the age of 40. Multiple members of my family went into group care for the disabled. All of whom are great and careful advocates for these human beings. But like many professions, there are some people that should not be working their jobs. I have been told frightening stories not unlike this article. The medicating of clients in homes so that they are so drugged up that they don't have any personality left. Countless deaths are not investigated and when one of my family members tells a parent to look into some facts or medication their adult child was taking, the agency tells them that they are no longer allowed to talk to family members or risk their job. Calling out other staff members when one sees wrong doing to the disabled is often not taken seriously by the management and there are no penalties for screwing up over and over again until someone dies.The people running these agencies need to show accountability but I have no clue who cares enough to provide more money to demand accountability to police these agencies as an already struggling system. My family was very involved in my uncle's life. But when he was placed in his home we believe he was abused. He couldn't tell us exactly because he could not communicate clearly, but we knew from his behavior. These agencies sometimes fail to do background checks, allowing disturbed workers to go in and be paid to take advantage of someone that has no voice. And then you have great workers that see all the injustices, that can voice what is really going on and yet that information still falls on deaf ears to the management of these agencies.Thank you to all the advocates out there for truly caring for these mentally and physically disabled human beings that are caught in between two worlds.

  106. Too many "Big Thinkers" from the White House on down, and not enough competent Nuts & Bolt people at the operational level. Not enough periodic evaluations by outside auditors of municipal and state level. At base, it is as simple as that. Not that hard to institute a regime like this, tough it will take some time. Man and boy I've been a union man and even gotten fired for this, but unions also have a large share of the blame in this situation. My brother and sister union members Right or Wrong. Given the history of unions and their struggles in America, struggle paid for in blood and false criminal convictions this stance is understandable, but times have changed and all institutions must evolve. Unions not excluded. But getting back to basics, my suggestion above has validity on the basis of success in other countries. Your governor and your mayors should get together Right Now and has this out.


  107. OPWDD corruption, fraud and abuse will only be curtailed when politicians, their appointees and agency managers can no longer be assured of the silence of public employees.
    Currently it is accepted practice for supervisors at OPWDD with the assistance of the Personnel office to aggressively retaliate against any employee who speaks out publicly to report wrongdoing whether it be illegal or immoral.
    OPWDD Commissioner Courtney Burke launched an "I Spoke Out" campaign to change the agency culture and encourage employees to come forward with knowledge of abuse but when they do report they are retaliated against immediately time and time again still!
    Another insult is that when OPWDD administrators are caught red handed engaging in abuse ( see June 5, 2011 article ) ...they are moved and not fired?
    The Director of O.D Heck and Personnel Director whose negligence is obvious both are simply moved to new locations?
    New York clearly needs a Public Employee Free Speech Law which expressely forbids retaliation against conscientious employees who publicly tell what they know and provide stiff penalties for violations.
    Retaliation is currently legal and accepted practice!
    Only when powerful figures can no longer count on their ability to enforce the SILENCE of subordinates will the safety mechanism be restored. Until then....articles like this will be the tragic result.

  108. Those of us old enough to remember the scandals at Willowbrook, Gov. Carey's dumping of the mentally ill on the streets to save money (his only major mistake, to me) and the Nursing Home Scandal of the 1970's, cannot be surprised at this painful to read story.

    We are seemingly unable and unwilling to help those who cannot help themselves. A brouhaha might ensue, but will no doubt be kicked from the headlines at the next Kardashian divorce. Our attention spans have gone the way of our compassion.

  109. People die.
    That's a fact of life.
    This article gives a number of patients who died with the implied suggestion they died because of the lack of care.
    That is a irresponsible position to take as it is looking to blame people even before more is known.
    I would be more interested in finding out the level of care the average patient gets and is it adequate.
    I would assume it isn't but I would suggest that to expect the level of care to be any better is self delusional.
    You can't expect workers to give the kind of care these individual deserve.
    The people they are taking care of are not members of their family yet we expect that they would be better care givers then members of the family are willing to give.
    That's nonsence
    They are doing it for the pay.
    I know that no matter how much you pay me I couldn't have the same concern and the willingness to take care of someone then I would have for a relative.
    So the very concept of giving the state this responsibility maybe is part of the problem.
    We have to get the family more involved.
    Only they can do it.

  110. For anyone who says "less government" and "less regulation" are the answers to society's problems:

    This story is *precisely* why you need government and regulation.

    Trusting in human nature, that people will simply do the right thing, is the surest recipe for misery.

  111. My cousin was one of those who died way too soon, around 50 years old when she died. She had good care in general (we thought), and was usually happy, living in a group home for disabled DD in Manhattan. She died of injuries sustained when she had a seizure. The aide had failed to secure her in the wheelchair lift, she seized, fell and broke her neck. That's what they told us. I wonder how her death was reported in the official records.

  112. Mr. Hakim you are leaving out so much. The care given to the developmentally disabled in NYS today (even with its flaws) is far better than what was available 40 years ago. I urge everyone who has read this article to look up what the quality of care like was during that time.

    Mr. Hakim I urge you to investigate the rules and regulations that have been put in place by OPWDD since Willowbrook and how these regs are enforced. At ICF group homes and institutions these regs are strictly enforced with close oversight by the department of health. However, these settings make up a small portion of the residences for the developmentally disabled. The majority of group homes in NYS are considered IRAs which are not required to uphold such stringent standards. Why? Because it is cheaper. These homes have less oversight, less standard rules to follow, less staff etc. This is only going to get worse. Cuomo has made it very clear that he will be closing more of these ICF facilities and letting the IRAs pick up the slack. Cuomo and his administration do not care about quality care for the developmentally disabled. They want to divert money from programs for these individuals and put it towards their own personal interests.

    For all of you appalled by this story understand that improving the system further will cost more not less. Are you willing to pay?

  113. In other words, you hide your lack of moral care, with high living and discuss a health care system that is overbalanced, by neglecting to liberate the poor, because you have more important issues to chew on.

  114. I didn't read much past the first page of this article, because what I did read brings back a flood gate of ugly memories ……

    After I first retired, from a long and successful career as a Industrial Electrical Engineer, I thought I would like to work in the medical industry, so I went back to school and picked up a few credentials, the training for which a fourth grader could have passed!
    Nonetheless and because I found that to be the case in many of the schools, I went on and learned and earned more accurate and detailed training to qualify my self for a second career. To accomplish this task required taking several classes from several different schools, both online and through the local at no small expense ….. I didn't last very long in this industry, and it is very much just that, and certainly not a profession by any, sensible - much less, professional standard!
    Over the course of about six or so years I worked in virtual every hospital ER and OR. not because I was dismissed from any, but because I chose to work through a registry. No brag, but just plain fact, I was extremely well qualify, professional, efficient …., …. that the registry constantly got requests for not just a warm body to fill a temporary vacancy, but requested me, by name specifically, day after day …… enough tooting my own horn here,
    The reason I left that industry was out of disgust of it in its entirety, both in the ER, OR, throughout various other areas of the hospital, and especially the nursing industry!
    Notice, I use the term "industry" because that is what the entire medical arena is, anything but "Professional!" I found it no different, far worse in the industry of taking care of the elderly outdoes of the hospital environment.
    And make absolutely clear, the State is equally and just as guilty for the pitiful quality and care of those in need of these and other medical services and or attention, through and through …..!

    I had, throughout my short second career, filed three of fo

  115. The complexity of caring for these individuals is mammoth. Families have made the decision to abscond their responsibility. Then out of guilt they blame the system/ people who have to do what they did not want to do.
    Taxpayers do not want to pay salaries that allow the "caregiver/ salaried employees" to live a middle class existence. Often the workers work two jobs just to make ends meet. They get no respect for the hard work that they do while the people at the Goldman's of the world reap a gazzillion dollars for playing monopoly with our money and they sit at their desk all day, texting their family and friend with a Starbucks at their desk.

    We need to change our thinking about how we treat and pay the individuals entrusted to the care of other, staff at adequate levels. And on the moral side, examine the extreme medical care that is given to the individuals who from day to day have no quality to their life. Families need to be educated about acceptance.

    This is a societal issue.

  116. Some of the comments are ill-informed. I speak as someone who works in this field. We are a charity that looks after people with severe development disabilities (often comorbid with mental health issues and physical disabilities) in a setting of 100-ish 'normal family homes' with each home having 1-5 residents (dependent on need).

    This is NOT about the staff's pay level OR their level of education, it is about the ethos of management and the training they provide. A social work degree does not give you the ability to look after someone with such serious problems, the only thing that does is the right kind of nature plus specific (and regular) training, coupled with strong support from your management. We have employees who left school at 16 with no qualifications (although we only employ people from 25-years of age) and they are often our best employees.

    But then our ethos is that the residents are OUR bosses. They have access to management whenever they want and their concerns are listened to and taken seriously. Our staff are paid (starting salary £10 an hour) and they are paid to ensure our residents get to live a full and happy life. If they don't do their job the residents know they can go to management and action will be taken (counselling, further training etc) we will do whatever is needed to ensure our staff are the best and our staff know they have our support at all times.

    Forget pay and qualifications (although yes people need to be able to live), it is about the ethos of the organisation and THEIR views on people with developmental disabilities.

  117. Not much has changed. My brother died of never-expained causes in 1971 at Letchworth village.

  118. And for those that think the people's parents/siblings should look after them, think again.

    Our organisation ensures that it is what the residents want that matters. No-one can be expected to handle someone with severe development difficulties 24 hrs a day without relief, nor will they have anywhere near the training required to help provide their child/sibling with a good quality of life. Some parents/siblings are well meaning but want to mollycoddle their child/sibling, they actually hold them back from realising their full capabilites and it is their child/sibling that suffers.

    People with developmental disabilities should live within organisations like ours with contact with their family being well-maintained. We ensure this happens if it is what the resident wants. That way the resident is not held back, they get to go sailing, cycling, diving, to the pub, out dancing etc. They get to realise their full potential and to live a full life with fully trained staff their to ensure their safety.

    Yes some people's developmental disability can be due to the actions of their family (inbreeding, neglect etc.) but those cases are actually quite rare, most developmental disabilities just occur and are no-one's fault. Why should the person with the disability suffer by being stuck with family members incapable of looking after them?

    YOU get to live the life you want, THEY deserve to live the life the want!

  119. The work is boring and difficult and unrewarding. The pay is scandalous and McDonalds is often a step up. We had state institutions in the past and these would have been a better vehicle. Employees would have made better incomes and supervision could have been better. Unfortunately, thanks to Geraldo and others, the State has been encouraged to abandon these people to private enterprise and the money seems to flow to the owners and not the people that work face to face with these developmentally disabled people. What should have happened is that the state institutions should have been subject to better management and employee discipline. Alas the major financial responsibility of our government now seems to be financial stabilization of the major them out of their mistakes....and our most needy are taking back seat.

  120. The woman claims she thinks God put these infirmed folks for us to take care of, it doesn't sound like she was taking care of him, the state was!

  121. In all homes, whether ordinary "nursing homes" or homes for the "developmentally disabled", staffing levels should not be at "normal activity" levels, but at "two emergencies happening at once" levels. Whether those simultaneous emergencies ever happen is immaterial; readiness is the important thing. And baths should never be given when there is only one staff member on duty.

  122. My son died in restraint in a Forensic Psychiatric Hospital in N.Y. State in 1984. He was left alone in double restraint. With the assistance of legal professionals who investigated all available evidence, I learned that the town's regulation for investigating hospital deaths was left to the discretion of the Police. Hence, there was no investigation on record at the District Attorney's office.In addition, I learned that four employees signed sworn statements attesting to having seen my son fall and die as a result of trying to climb the fence. I sued N.Y. State and won despite the District Attorney's representatives assertions that my son died because he held his breath. In my own research at the time (1984,) I concluded that "The Commission on Quality of Care" was nothing more than a cover-up for NY State's Hospitals, Nursing Homes, Psychiatric and Developmental
    State Hospitals, Nursing Homes, Psychiatric and Developmental Group Homes. As a result of a Newsday's series of articles entitled "Death in Restraint" in which the reporter cited stories of various victims including that of my son,I was invited to speak about my son's death at a few seminars for professionals and other hospital staff members involved in patient care where it was hoped that the demonstrations of safe methods of handling agitated patients would be implemented at many of the attendees facilities. It was surprising to read in your article that the statistic you quoted for deaths in restraint between 2001 - 2010 is still so high (40%). Obviously, there's more to be accomplished.

  123. Several of the comments sent by readers blame the parents for sending their children for others to take care of them. I'm the mother of an adult with disabilities, and I have taken care of him all of his life. Even though I want to continue caring for my son for as long as possible, I know I'm not going to live forever and, having no close family in this country, there is nobody else who could take care of him. It is articles like these that increase our heartache thinking what our kids life's could be when when we are no longer around to advocate and to insure that services are adequately provided. They say a society is judged by the way it treats it's more vulnerable members. How do you think we're

  124. Some stories are very difficult to read and share, as is the case with today's New York Times piece about the questionable deaths of 1,200 individuals with disabilities in state care in New York. For those who have children of all ages with special needs, this is the kind of story that reinforces their worst parenting nightmares about the horrors of possible abuse at outside placement for their loved ones, even when a placement is needed and the groundwork is be done to find a good one. It's also another reason so many families are today taking part in building/running group homes for their children with special needs to live in, especially when they become young adults.

    Hard to read,? Absolutely. But at least, we are no longer hiding these atrocities. That will help create greater awareness of this population and needed change, including how we train and pay those entrusted with the care of such individuals. We need to see this population as 'people first,' with human value, not as the unnamed disabled with no value, as has been the case in this country, and the world for far too long.

    My heart broke reading this story, both for families who are part of this tragedy, and because I know that for the grace of God, this could easily be any parent's story.

    Shameful. We must do better.

    Kudos to The New York Times for running this piece.

    Judy Winter
    Author: Breakthrough Parenting for Children with Special Needs: Raising the Bar of Expectations
    Co founder: Eric 'RicStar' Winter Music Therapy Camp-Michigan State University