As a high school student, I was so aghast at the happenings at Willowbrook and Geraldo's reporting. I started a fund raiser at my school (my apologies I cannot recall how much I raised) and volunteered for the One to One Day Festival in Central Park, pairing volunteers with Willowbrook School patients. I was then given a ticket to Madison Square Garden from John Lennon who put on a benefit concert for Willowbrook and as a thank you for the volunteers. This took place ~ 1974! I cannot believe these conditions at Willowbrook still exist. My prayers are with the patients and those who truly do their best for them under these unfortunate circumstances.
3
A read of this heartbreaking article resonates with our family's experience and the tragic, cruel & needless death of our sister on March 4, 2015 (See Justice For Carolyn, google).
At 5 years old my sister was admitted to Willowbook, then Bronx Lebanon, the LI Developmental Center, and finally, a group home on LI.
She enjoyed her Day Program, but received substandard medical and dental care. For example, after being told for 2 years she was not a candidate for dentures, a dentist finally told me she was a perfect one. The group home staff would feed her large chunks of meat. On 2 separate occasions my twin sister and I witnessed her choking. On several visits we noticed what appeared to be taser marks on the back of her neck & forearm. Several other residents showed me theirs.
Several complaints to the NY State Justice Center for the Protection of People with Special Needs emanated only in a form letter from the group home.
In January, 2015 Carolyn sustained an injury in her group home. Her knee was fractured; her ankle badly cut. Never given the ordered antibiotic b/c "it wasn't available in the group home" she became septic. Delaying calling 911, only when she became unconscious was she admitted to the ICU where she died 11 days later.
Her name appeared on the Suffolk County list of people who died from abuse & neglect. This list was released in tandem with the one in the Bronx.
We await Justice for Carolyn still.
6
Dear Ben:
Thank you for another incredible story. Your writing is amazing and I am left heart broken again. Keep up the good work.
Willowbrook may have "exploded in national consciousness" when Geraldo Rivera reported on TV, but it was Jane Kurtin of the Staten Island Advance whose groundbreaking reporting first brought the scandal to public attention.
57
@Pete Harrigan yes, exactly correct, Jane Kurtin was in the trenches long before Geraldo came on the scene. If anybody in America deserves a Pulitzer, it’s her!
21
This is horrible and horrifying.
It hits close to home for me, because I have a son (still elementary school aged) with special needs, who is developmentally disabled.
I see adults in group homes here on Long Island visiting the park and the library and the grocery store, and I think, will my son be doing that in twenty years? Will he be safe? Will he be happy?
The uncomfortable truth is that many families are unable or unwilling to care for their developmentally disabled children, especially as everyone gets older. Developmentally disabled people often have complicated health problems and challenging behaviors, as well. It becomes difficult to raise your other children and work outside the home when you take care of developmentally disabled family members.
What's also true is that many people don't want to work with developmentally disabled people, esp. in a home setting. It's a challenge finding people to work for you, even when programs provide funds for decent wages. Once you do get people, turnover is high, and you're constantly recruiting for new workers. Fortunately my son's health needs are straightforward. Some families with children who are on respirators cannot keep nurses on hand, and must do skilled nursing care themselves when nurses quit or call out and substitutes cannot be found.
Care at home or in group homes is idealized, as a response to the shocking abuses found in institutional care. Institutional care is still needed, but must be improved.
55
So Michael Bloomberg has $62 million, give or take a billion, and yet these people are living in conditions one has trouble believing really exist. What's the connection? Why tax dollars of course. If the billionaires in NY paid their fare share, if taxes were raised on the wealthy to a reasonable level, that money could go to pay for and hire better trained workers, and decent living conditions. How can it be that in the wealthiest country on earth we let our most vulnerable live in these conditions? Andrew Cuomo should be fired.
27
@lzolatrov
Really?
Do you really think a Republican would do better? Maybe we can get someone trump likes to be Gov of NY State! That would fix the situation and the millionaires would all get a big tax break!
2
Disabled children are cute and adorable and wonderful little fundraisers. Disabled adults, not so much. Perhaps we shouldn't be so reluctant to make the problem go away at an earlier stage.
4
Disability can strike at any age and at any time. We need solid protections, oversight and high-quality care for all who need assistance and become vulnerable be it because of genetic disease, illness or accident.
8
@Nancy
"because of genetic disease, illness or accident."
What about age?
Now we know why we must tax Apple and Amazon and Google.
8
Why? This is the question that plagues me. How can one human being mistreat another, especially a vulnerable other, this way? All my instincts of help and protection come out when meeting anyone who may need to be protected. I really, really need to understand this mentality of abuse.
9
I find it hard to understand why more of these disabled people who have families aren't being cared for by family members?
I know some disabled individuals may be very difficult to care for, especially if they're aggressive, or have medical needs that can't be met at home.
Migdalia, the woman featured in this article, has or had 12 non-disabled siblings. Not one could take her in? Or share custody and care among a few siblings?
In my family, our frail elderly relatives, including those with dementia or disabled after a stroke, were cared for at home by their adult children. It wasn't easy - often it was very difficult. But by sharing care and respite, we managed.
I would think that if there were more government-funded aid for families caring for disabled children and adults at home, including home health aides, home medical equipment, and where needed, help with costs of housing, it would save taxpayer funds - and would be much better for the individuals with disabilities.
But only, of course, if the families were willing - and were caring people themselves. Sometimes family members can be just as abusive as well.
15
There is something wrong in a society that allows the neediest folks to be punished, just because thats what institutional works can do. It’s quite similar to how America treats its elderly, with no respect or dignity. Just lock them up and throw away the key, until it’s someone you love.
10
Thank you for your reporting. We go about our advocacy daily with compassion and tenacity, but sometimes that is not enough. Effective oversight and transparency is required. Keep shining a light on this issue.
13
One thing that really struck me in this article: After one resident was severely scalded and had to be hospitalized in a burn unit, "The group home’s staff had to be retrained in how to measure water temperatures."
Seriously? What "training" is needed to check that shower or bath water isn't so scalding hot it causes second-degree burns??
At best, this was severe neglect - but more likely it was deliberate cruelty.
I don't care how little these perpetrators are being paid. If they don't like the work or pay, they can take fast food or cleaning jobs or any number of other jobs where they wouldn't have contact with such vulnerable individuals.
There are people who choose this kind of work because they truly want to help those who are vulnerable. And there are those who take these jobs because they're sadists.
I know, because one of my sisters was one of the former. She loved her work helping those in her care, patiently helping some to make small steps of progress in feeding or dressing themselves, etc.
She left the field after many years, disgusted and traumatized by many of her co-workers, supervisors, and the system that inflicted horrors on the residents.
She also was disgusted with many of the residents' families who were abusive as well - with residents returning after family visits with fresh new bruises - and regressed behavior.
29
These relatives need to advocate for better services for their family members. Are these city run facilities? If so, I am not surprised. How sad.
1
Thank you for bringing this story to the forefront. May I recommend the great book,
American Snake Pit: Hope, Grit, and Resilience in the Wake of Willowbrook by Dr Dan Tomasulo. Dan also shares a harrowing and hopeful story about his experience as a newly minted therapist at Willowbrook.
https://www.abebooks.com/9781945233029/American-Snake-Pit-Hope-Grit-1945233028/plp
7
When we fight for unions, we fight for the retention of employees who abuse others and the system. This is a horror and those union employees should have been terminated at the first indication.
18
"In a visit the following year, then-Senator Robert F. Kennedy said the facility “borders on a snake pit.”"
Kennedy said this in 1965 and Geraldo Rivera's report came out in 1972. What was going on in those 7 intervening years?
14
Blame Ronald Regan. He cut back the Kennedy era funding for mental health. The republicans continue to not care.
26
Really wonderful that the unions stand up for the psychos who beat and torment our most vulnerable citizens.
21
But this America. The shining beacon on a hill?
6
Thank you for covering this. Please stay on it. Our most vulnerable family members need and deserve this attention.
16
As a teenager and musician growing up in Staten Island, one year during high school a bunch of us participated in a production of "How to Succeed in Business." Since we didn't have any alto saxes, I transcribed the part for flute, which I played. When the show ended, a bunch of us decided to form a concert band and continued practicing pieces, crammed into our teenage conductor's parents' basement. They were mostly show tunes like a suite from Man from La Mancha. Somehow we ended up performing at Willowbrook. I remember that the audience was mostly children. When we finished, the young residents swarmed us, hugging us, reaching out for our hands. It was just astonishing. They so appreciated what they had heard. I had no idea at the time, of course, of what was going on there. I was 16 or 17 years old. Now reading this, I can only imagine that that hour of music was a rare break in their miserable existence. How sad to read of this. As a country, we do not take care of the most vulnerable, whether they are children, the elderly, people with disabilities. I have lost faith in this country of ours; more so each day. We have a lot to learn and a long way to go. Family values? Hah. Human kindness? Hah.
58
This is one of the saddest things one could ever read. Some of the most vulnerable of our society being abused.
People who are care takers should be undergoing very serious psychological testings before being hired. Abusers know where to go.
Our society would benefit to have obligatory classes in schools at every grade to practice and cultivate empathy. Education is not just about knowledge. It should also be a learning how to live place.
I wish everyone of these people to be properly taken care of tomorrow and thereafter.
23
The US has a long way to go before we join the ranks of the civilized societies on earth. To get there we have to marginalize the mean and destructive, rather than letting them take over, for it is their attitude and priorities that foster and condone the kinds of cruelty and abuse described here.
43
Yes Yes Yes.
7
In 1975, in the wake of the Consent Order, I was the first Investigator hired by the NY State Dept. of Social Services to formally investigate conditions/allegations at Willowbrook (under the direction of Joseph Martinez, Esq.). I was young but thought myself worldly but nothing had prepared me for the human tragedy which I witnessed on a daily basis. Most union members were in total "stonewall" mode - they didn't ever know anything about how residents wound-up abused. As noted, most victims were unable to articulate what had happened and this was particularly frustrating. While there I also responded to the first death in my career; and it was very touching. I'm just sad that after all these years it sounds like not much has changed - just the venue..."man's inhumanity to man"...
51
In our house we have two paintings by William Britt, a man who was confined to Willowbrook for many years due to having a developmental disability. He taught himself how to paint there and eventually become recognized for his work, much of which is of birds and nature, scenes he was denied direct access to while confined. Britt's work has hung in the Governor's mansion of New York, the Kennedy family's homes, and is included in the collection of the former Emperor of Japan. One of his paintings was the featured cover for invitations to Rose Kennedy's 100th Birthday party. From the nightmare at Willowbrook there emerged many remarkable lives, one of them an artist who continues to remind many of us daily, through his beautiful paintings hanging on our walls, of the need to fight for the rights of those with disabilities still.
54
@Tintin Thank you for this.
3
I could recall when this aired on ABC, I was about three years old. It was truly scary and it something I will never forget seeing, my parents spoke openly in amazement “ How could people, treat people like this? ”. Sadly we still have incidents of similar behavior roughly fifty years later......
14
“The greatness of a nation can be judged by how it treats its weakest member,”
I worked with this population for 20 years and finally had to leave because of burnout.
The sad fact is for the most part ,people in power in USA don’t really care about them.
Because if they did it would be properly funded.
32
Low pay, no benefits. I couldn't live on the wages the care staff at these facilities make, yet we expect someone else to do and take exceptional care of our loved ones. This is an mentally and physically exhausting population to care for; those who are willing and fit to do so deserve fair and adequate compensation to be able to meet their own needs. Yet like so many difficult and unpleasant jobs, we have decided the job is only worth low wages. This should not surprise anyone. But be assured that someone is making a very good living at the expense of a lot of suffering.
44
Higher pay won’t make abusers change. There many extraordinary health aides at the same pay rates. This is a question of retention of abusive staff and a failure to monitor.
19
@Karen ... True. No one will take care of your children like you do. Or should. And then there's the 14 children part.
4
@Karen
Whatever your job in this life, your best effort is expected. Whatever your disability in this life, the best care is required. Period.
8
Many of these "care facilities" are uncaring dumping places for both patients and also for their underpaid, poorly trained and supervised "caregivers"...they are all people no one wants to think about..
13
These places and the people who run them are sickening. Capital punishment is almost too lenient for the people who own and many of those who work in them.
9
@Kevinlarson
I agree!
1
The union. The union protects the workers because that's what the union does, no matter what the allegations. The burden of proof lays upon those who cannot answer or protect themselves. The union shrugs its collective shoulders and the abusers go back to abusing (no matter how they word it) those who cannot etc. etc.. What kind of agreements/contracts allow this nonsense? Why are these so-called unions so powerful that they are allowed to protect those who abuse others; and ultimately it's all of us who are the abusers. The unions at least have no pretense. They know they've made a pact with the devil.. But those who negotiate and sign the agreements in the name of the public...they have truly abrogated their responsibility.
20
Injustice in a developed world where there is supposedly a sound legal system in place is the most atrocious of all. Why are unions allowed to get away with protecting such criminals?! As a parent, this story pains my heart so much.
13
I am sickened by the actions of the CSEA union. Why do they want sadistic abusers to continue torturing innocent helpless victims? Shame on the CSEA. All State workers must be ashamed by this and the Justice Center should evaluate it's own role on this horror story. The horrors continue for Migdalia and many others like her. SHAME on the negligent CSEA.
19
If Migdalia’s family had received home health care, she and her sister could have lived at home and learned to function at a much higher level.
This was a child separation, too.
13
With 14 children that would have been close to impossible.
8
This says so much about US culture; failures at many levels. We have money for wars and bloated defense budgets, when funds should be allocated to create thousands of middle class jobs taking care of our most vulnerable. These issues are not even on the radar of our elected officials. They get away with it because there is no grass roots culture that demands humanity.
25
In the Spring of 1972 as a Bible College student spending a semester preaching the gospel from the satellite campus in Brooklyn, I along with a female guitar playing student were assigned a regular Sunday ‘outstation’ to Willowbrook. It was the first time I ever encountered such appalling conditions. At 19 and an extremely naive rural Pentecostal boy, I didn’t realize I should speak out against it. Lydia was a saint. Those kids reeking of urine and feces would run up to hug her and she would embrace everyone until they all sat down to listen to her play the guitar. An amazing act of human kindness.
43
This is one of the most difficult comments I’ve ever had to write at the NYT. In the late 1960’s, I worked at the Willowbrook State School, and it was a season in Hell. The poor human beings that I worked with, gave a daily bath to, dressed and fed during my shift we’re not only all severely retarded below the age of three years, but were also afflicted with extreme cerebral palsy. They basically lived in baskets, with the better off ones in wheelchairs. I can attest to the horrors that occurred at the hands of the staff there, who were drastically underpaid. What is most painful to me personally is the fact that, given the excellent investigative reporting in this article, things have remained the same, but are just scaled differently, i.e. now instead of a centralized location, these poor people are spread out over many locations and jurisdictions. Where are justice and fairness in our society? Society is judged by how well it treats those of its members that are the worst off.
86
This is inexcusable yet it happens throughout our country. I have a daughter who is fortunate to have excellent care but everyone should have competent safe care. We should be able to provide the proper care for the most defenseless. My god..what kind of society are we?
14
Certain Public needs and risks will always result in Market Failure. Public Education, Health Care, Retirement Security, Environmental and Worker Safety, and Institutional Care for the less fortunate. Until we, as a Society, finally agree that we need to fund and pay for these Common Goods, collectively, we will forever be at risk to Market failure. Just as the existence of Billionaires are an example of Market failure.
20
While I was a young psychology student, as part of the fulfillment of course requirements, I visited a similar facility in West Virginia during the early 1970s. I was young and inexperienced and I found the conditions at the facility shocking. By then, we had stopped using the old classifications used to describe the mentally and physically impaired. They were referred to as educable or non-educable. The wording didn’t matter one whit. Some of these people were so badly impaired that I could see it was exceedingly difficult to provide the individual care they needed. The problem is with the warehouse, concentrating severely disabled people without providing the staffing necessary to care for them as individuals. Many of these facilities are run by state government and some have been privatized. When the business model is based on that of a corporation where every dollar is squeezed out of the funding to maximize efficiency, then the recipient of the care suffers. What is meant by that statement is that it is often the motive to stretch the same dollar to try to cover too much. Corporatization of healthcare in general has ill effects on the care provided. The constant pressure to do more with less leads to the breakdown of the system. A complete overhaul is the solution, along with providing sufficient funding to support it.
22
@Blueinred/mjm6064 I am so sick of the "do more with less" cheerleading that I've seen go in behavioral health care, education, and public service. This is why Sanders resonates with so many of us. Why do we always expect the just getting by to do more with less, as if it's so easy? It's never asked of those as the top. When I was a low paid therapist in community mental health, I was always having to do less. Whether in my professional or personal life - I couldn't do more with less money and fewer resources. I could beat myself up trying and failing, but the fact is, having less at point A and doing more at point B, always resulted in less for point C. I worked a second job to help cover the bills and my health and much needed social life suffered. I came to view my clients as leaches sucking me dry, which generally does not go a long way in sustaining empathy and the motivation to stay engaged. I found a better paying job in another industry and left before I was completely burned out because I knew I had to. The healthiest and most ethical of us always do. Unfortunately, the healthcare system often rewards silence and going along to get along and finds a way to punish those who speak up.
7
My mother took care of my brother with severe special needs at home for her whole life, and after she died he lived with my sister until his death. It was so hard, and it pretty much consumed her life, but she was very clear-eyed about his vulnerability - he was non verbal, down syndrome and probably autism. People in the system (state waiver programs) were wonderful, and helped make this possible, but others in the system and out were not. It was an endless battle to keep him safe and get the funding he needed to stay with her as she aged. He had his fierce mother and 3 competent sisters, we could barely do it. The economics of so much care means that an average family must depend on Social Security/SSI and state waiver programs. We eventually found caregivers to help out who were wonderful, yet they are paid so little.
50
There is no excuse for the abuse and neglect that these individuals have endured. Everyone guilty should be penalized, including criminally. However, I do take issue with the class and racial bias in many of these comments. Although these workers should be paid more and provided with adequate training, there is no necessary correlation between abusive behavior and low pay, as many allege. The quality of our character is not dependent on our income bracket, to allege otherwise is to support class bias, and by extension racial bias, because black and brown people are disproportionately lower class and often do this work. We are all aware of inappropriate and criminal behavior by doctors, nurses, teachers, lawyers, and priests.
I also take umbrage at assertions that these workers are likely to commit theft in the neighborhoods where they work, as some here have claimed. Most workers are just thankful to earn a paycheck that will enable them to live dignified lives and care for their loved ones. I'm all for just law and order vigorously applied, but let's not fall into the Bloombergian fallacy that people of a certain class and race are overwhelmingly criminals. They are not. Stop-and-frisk had somewhere between a 2-10% success rate.
My late mother worked for a short time at Willowbrook providing the best care she could to those children. She was a low-income, black mother, without a college degree, who cared deeply about people, especially children and the downtrodden.
28
The physical and mental abuse, let alone neglect is devastating to read about. I had to skip reading the explicit section about incidents. What saddens me more is the sexual abuse these children and women and men must have and be experiencing. There’s no way that’s not apart of these abuses, just the hardest one to prove. Such a sad situation.
7
Mahatma Gandhi Quote: “The true measure of any society can be found in how it treats its most vulnerable members.”
By this measure, we are failing. Why? Greed, selfishness, indifference. A culture that doesn’t care.
That we are the last wealthy country that won’t provide decent health car for everyone is further proof.
The way these people are mistreated is not shocking, but it is shameful.
12
Funny how the unions are complicit in perpetrating the kinds of horrific abuse they were once designed to ameliorate.
9
I’m surprised Vickie Schneps was not mentioned
She was an advocate for her daughter who was there
I thought she and Geraldo Rivera worked together on this issue
And I remember when group homes were just beginning to open, people did NOT want mentally ill residents living in there neighborhoods
Police had to be called to Community Board meetings when this issue was on the agenda
8
Take a look at the trillions we spend on murdering people overseas, in countries that never attacked us. Compare that to how much we pay people to take care of the disabled or to teach children. That tells you all you need to know about what this country's values are.
45
@Martha Shelley bravo, very well said, and so true!
8
HAH...
Go have a gander over at the Poughkeepsie Home for Children.
the "Oldest" continuously operating orphanage in the US.
4
The research for the 1972 Peabody Award-winning expose of Willowbrook, as well as follow-up pieces done in the 1980s, is at the Special Collections Research Center, Syracuse University: https://library.syr.edu/digital/guides/w/willowbrook.htm
6
Please make me believe that this happened in third world countries !! Actually it’s in US! Sad sad sad !
2
The article doesn't mention the most notorious Willowbrook issue in the past: the infamous hepatitis studies in which children were deliberately given hepatitis virus derived from infected children to study the disease. It also seems debatable to tie Willowbrook to present day mistreatment of developmentally impaired adults. There are plenty of them all around the U.S.
It may be that the one reason the "school" remained open so long was an ability to conceal what things were really like from visiting health professionals at times. In 1968-9 I was working in a bacteriology lab at the CDC and was one of a small group sent to Willowbrook to evaluate an epidemic of shigellosis, a bacterial diarrheal disease. In the few days we were there we had access only to a very small number of patients in a limited area and the physical circumstances they were in were not horrific as so often described although the lack of human interaction and physical activity were appalling. In retrospect, we were conned.
14
As an owner of a facility for the developmentally disabled and a parent of a severely disabled child I have to say Willowbrook was not ideal privatizing was worse. People state care because these pictures were so shocking but a lot of it is that these patients are shockingly impaired and they have contractures and drool and have no bowel or bladder control. Better training and management of the personnel would have helped. With multiple small private facilities contracting with the state the thought was that the cost would go down. It did but it did on the backs of the employees who work with these people. The work is exhausting physically and emotionally. At least if it is run by the state it would be unionized with benefits and retirement and decent time off. And abuse occurs in these environments when the workers have to work multiple shifts without adequate away time or take care of too many. And some operators enter the business to abuse the system. At this point the pay rates for caring for the developmentally disabled are much lower than they would be in state supervised and owned facilities. So these unpleasant pictures should not cause the taxpayers to blame anyone but those who choose not to adequately fund and who choose to give billionaires tax cuts and ever more money to the military industrial complex. This could be an area where a national jobs guarantee could help. It is hard to get Americans to do the care work at current pay rates.
29
I live in California. We have made progress in providing lifelong services and support to individuals with developmental disabilities and their families under the Lanterman Act.
Unfortunately, much of the California community service system is built on the state minimum wage which went from $12 to $13 in January 2020.
People who care for our disabled and aged family members should be valued for the important work they do and paid commensurately. How much is that ? I don't know but it is definitely not minimum wage.
13
Helplessness, powerlessness, stigma, segregation, concentration are the bricks of certain abuse. Institutions, large or small that are fueled by Medicaid "ransom" dollars are an anathema and must be ended. The clear commodification and profits extracted from the "hostages" is the cultural set up for what Mr. Weiser reports and is so wide spread not just for those with intellectual disability but the entire population as we age and become dependent burdens. The poverty that is at the root of devalued people must be addressed. This is a system nightmare and can only be altered with the establishment of universal, rightful, comprehensive health care, expanded and improved Medicare for All, single payer funding. This will change everything, wages, status, transparency, professional education, accountability, liberty. As a physician that helped organize the federal class action against the State of New York for crimes against humanity at Willowbrook, seeing the continuation of the inexcusable and totally fixable situation of out of home placement is desperately painful. This is a societal problem, a policy and resource challenge. We must end this formula for inhumanity system wide flowing from this coming 2020 election!
15
I'm surprised by the comments of educated readers who worked at Willowbrook and claim they were horrified by what they saw. Did they say anything? Did they call the police? Anything? As a society we have got to speak up when we see abuse.
12
@ladyluck
Yep..the shoulda pulled out thier cell phones, snapped a few pix, e-mailed them to thier state reps...
Or, they could go online and forward records of the residents...
It was the 1970s when Geraldo did his expose. People didn't tell on other people in those days....they trusted that authorities knew what was best. The DOCTORS didn't even tell....and they certainly knew better.
Everything on paper. SO easy to lose and so untraceable...not like today where records will be online forever to resurrect.
And no instant photos. By the time anyone got a photo the mess was hidden or cleaned up...
Look at Geraldo's expose on You Tube. The camera equipment they used was enormous...no sneaking up on people to video them...Watch if you can.
4
I went to college late and started in sociology, wound up in geology, graduated with a BS.
The state's agenda is cost saving; the employees' is to survive stressful and isolating work.
The expectations are impossible for the employee as evidenced by the comments below. Perhaps allowing them 5 years credit for work in drawing social security may help.
And a realistic look toward the outcome for parents considering a low IQ pregnancy is necessary.
We considered a required military obligation when a tenure at a group home would be the best option.
4
Interesting that Geraldo Rivera once did important investigative journalism with positive results. Now he's a mouthpiece for our corrupt President. Sad.
35
@Jane Yes! Those of us who watched his reporting on Willowbrook remember his crusade for changing the conditions and starting the One-on-One program to help the kids. He's since had an integrity transplant and it's really sad to think of all the other people he could have helped with his reporting over the years. What a waste.
7
Shame !!! This article is disingenuous, the overwhelming number of individuals that well care for, and are treated with care and kindness. The workers are poorly trained and compensated(minimum wage $11.80) for the work they are asked to provide. For instance, the workers are asked to administer complex medication regimen and tasks like tube feeding and wound care. They are also asked to perform daily activities living, accompanying them to doctor appointments, cooking and serving meals, performing housekeeping duties, running errands, driving, etc. All for $11/hr.
The pictures used here are from Willowbrook days 1960s and are used to stirrup raw negative emotions like anger, fear, and grief. Shame!! the article is not an accurate description of group homes today.
4
VERY SAD!! I remember with horror the exposure of Wiiowbrook. Why has our benevolent, caring NYS government allowed these conditions to continue? Another reason for being cautious when we “leave it to government!”
3
My mother worked in a state run institution for about 11 years beginning in the early 1960s. She cared for them, fed them, bathed them and nurtured them. Many had been emotionally abused in there own homes and were then taken away by the State. They led fairly comfortable lives in the hands of a government run facility.. In many cases she was the surrogate mother in addition to being our real mother. She was a pretty stoic person, which made the job easier. A few of her patients did glom on to her. She worked mainly the men's wards. She hated the women's wards.
8
Pulitzer material.
I worked there the last summer it was open.
One of the old buildings I worked in is used by the CSI now.
So sad.
Thanks for bring this important issue to light.
9
@K Hunt
Did you bring it to light when you worked there?
2
I am a registered nurse that worked in a school and privately run group homes. Our facilities were in Chelsea and Roosevelt Island where 4 apartments were set up for 16 autistic men. It was terrible. The caretakers were most of the time only a chapter or two further ahead than the people they had to care for. The Willowbrook class members had additional record keeping burdens. This is all very hard to do with staff that is barely literate. I found that the caretakers that that we’re smart enough had ulterior motives. .Being paid as a RN I was on call 24/7 with the director of the agency.
Trying to keep up to date with medical appointments for routine care was a nightmare.
The state was oppressive in the regulations. Understanding that they had a good rationale but were impossible to accomplish with the staff.
State workers in the group homes are unionized with protection, ours were at will employees.
If you had to get rid of someone it was a disaster to find someone to fill in the schedule. Outside agencies provided some staff relief at a greatly increased rate per hour. These temp employees were often worse than whoever you had who didn’t show up or had to fire.
The state seemed to portray the group homes that they ran were smooth and within the regs.
Terrible accidents were swept under the rug. In a state run facility a fire in a group home killed residents with minimal overnight staff in a home with mobility impaired residents.
The system was horrendous.
25
Here's a thought: Offer a good wage for difficult work and get quality caregivers. Or we could continue giving away trillions of our tax dollars to billionaires, the military-industrial complex, private insurance companies, and corporations that are decimating our planet.
72
How is it that they get paid so poorly yet still belong to a union?
1
I agree. Care takers are THE most unappreciated people in our society. It's either unpaid or very low wages. I have worked as a nanny, a child care worker for children in state care and as a care taker for the elderly prior to my career as a teacher. I made cents over minimum wage and worked up to 16 hour shifts. It's not sustainable emotionally or financially. My heart goes out to the innocent, vulnerable humans who have endured such pain.
2
Having a mentally disabled, aphasic brother (55 calendar years, dev age 4 years) in a small group home (house with up to 8 residents) I was riveted to this story. My parents were so afraid of this happening to George they cared for him until age 85. They intended George live with us but that was impossible. George lives in a blue house in a small town nearby. I worry more about the care givers but thankfully the manager is quick to fire anyone who gets mad or says anything disparaging bout a resident. I check in every other day.
Most dev. disabled adults live in these home on the state & federal dime. Entry level is minimum wage with no benefits. None works more than 36 hours/wk so the home doesn't have to pay benefits. They just cannot do it given the reimbursement rate.
Here's how much is costs to take care of an adult who has the mind of a 4 year old, assuming caregivers have a living wage with benefits, in our area (median home price: $160,000). In MO homes must have 1 caregiver per two residents (for good reason). Let's assume $20/hr + benefits @ 33% of gross income or $27/hr. Must have three shifts so that's $27/hr*24 hr/d*365 d/yr = >$256K per year (>$126K per resident). Heck, at minimum wage it costs >$75K per year.
Even if homes could pay living wages it's hard to find the special people who can deal with a 200 lb 4 year old at 2 AM, especially as they get older. I will say my parents' trust fund has helped us hire extra aids so George has it better than most.
34
It's too expensive to follow the teachings of Christ, and to love and care for the less fortunate of our brothers and sisters. How could American billionaires possibly get along if our country, currently run in essence by so-called "Christian Evangelicals," had to pay the level of taxes that the rich do in the "evil anti-God secular" nations which actually follow Christ's teachings in practice and do take much more loving and merciful care of the disabled..and the elderly...than is typically done in America? Non-fake Christianity costs generosity and humility, characteristics which have been lost in most Americans at the top since the Reagan Era.
9
@Cowboy Marine
There is plenty of money available for the work necessary. The problem as you point out is the few whom have gained control over our nations politics, using religion and religious intolerance to get there, are too greedy to share even though they could not live any better than they do right now were they to triple the wealth they hold.
5
What misplaced priorities we have. What does the Statue of Liberty say? "Bring us your tired, hungry and poor?"
The large mental health institutions put into place under the reforms in the Progressive era (vs the old brutal insane asylums )in the late 19th Century were closed to be replaced by small neighborhood homes. Only the funding never came.
The brutality in these homes is the same brutality that animated the circuses of ancient Rome. The lack of respect of the physically strong for the weak. The winner taking all and leaving nothing for the loser. The de-humanization of those unable to defend themselves.
This is of a piece with what is going on in the US today--the immigration policies, aid for only those elderly who can afford it.
What we need is a change of mind, a new vision that what helps the one blesses us all. The government has to be the one to take the lead. We need to take back the government to serve ALL the people.
9
Unions? Retraining? Job loss?
I want the perpetrators in prison, in nasty conditions, with the rest of the inmates all too aware of what exact crimes their new neighbors were indicted and convicted for.
Let us know when the funerals occur.
And in 2019, now 2020, with cameras everywhere, cheaply available, images able to be stored on computers. It's not just the perpetrators who are guilty, it's their overseers as well.
Let the general population at a place like Riker's take care of this problem, and turn the cameras off when the vigilante justice is administered.
5
Sending developmentally disabled children into institutional care was a common practice in the 1950s and 1960s — even among the wealthy, who could pay for home care. It was thought that having the child living at home would somehow be detrimental to the other children. I knew several affluent families who had children in care (I was in a Catholic parish, so there were many large families). One family had “14” children, if you asked anyone how large the family was. But the real number was 15 kids. The one who was sent away was not counted.
These missing sons, daughter and siblings were, collectively, referred to as “retarded.” I found out, in adulthood, that one son of a wealthy and prominent couple from my parish was a Downs child. Surely, he could have lived at home? But no. He was sent away as a preschooler and lived in care for his entire life. His siblings led pampered, privileged lives.
23
As a father of two autistic boys, this is what scares me the most. They are so happy now, but I won’t be around forever. This really really scares me. This is our country. We don’t care.
273
I totally feel for you!
15
@Jason I'm not an expert. I have just written profiles of some of the best communities for disabled adults in my city (Houston) for a local magazine. I was struck by how many family members and staff said, Find a place for your disabled family member before they need it, let them start living there before you are gone or unable to care for them. It's good for everyone to find their place in the world and it's easier on someone to do that at a younger age rather than after a lifetime of being sheltered. Plus, you can make sure they are in a good place by choosing it when your family is not in crisis and watching how it goes over time. I apologize: the magazine's website doesn't seem to be working or I'd link to the articles.
24
@Jason I'm not an expert. I have just written profiles of some of the best communities for disabled adults in my city (Houston) for a local magazine. I was struck by how many family members and staff said, Find a place for your disabled family member before they need it, let them start living there before you are gone or unable to care for them. It's good for everyone to find their place in the world and it's easier on someone to do that at a younger age rather than after a lifetime of being sheltered. Plus, you can make sure they are in a good place by choosing it when your family is not in crisis and watching how it goes over time. I apologize: the magazine's website doesn't seem to be working or I'd link to the articles.
(PS I am not saying institutionalize your children. Just about when you are looking for a place where they can go when they are adults and you are not around.)
14
"The group home’s staff had to be retrained in how to measure water temperatures."
If anyone has to be trained, let alone retrained, in how to measure water temperatures they should not be working in these facilities.
And whoever hired them should be trained in how to find the Unemployment Insurance office.
16
I worked at Willowbrook for a year, 1979-80, as a master's level psychologist. Reading this article brought back some of the horrors of the place. I remember bright, garish colored "day rooms" and loud rock music, like a scene out of a horror movie. I remember some good, caring staff and some who didn't care. I remember writing "behavioral plans" for the residents that were never carried out by staff. I remember someone telling me to not walk near the woods because a girl had been murdered at Willowbrook by a prisoner who was working on a work/release program. It was a very scary place with little hope for the residents. I moved on, got a doctorate, and now work in private practice with "normal" folks, but the images of Willowbrook remain with me. It's sad that these abuses are still happening to our most vulnerable souls.
18
@Jean
So did you speak up and speak out about this before you moved on to your greener pastures? Did you blow the whistle for these poor folks?
6
Another refuge of actual devils.
Same atrocities crop up after many years. Will we be their victims as we grow too old to defend ourselves?
Nursing homes, Assisted living, Jails and prisons all need to be monitored. But that is so obvious.
Why are they havens for the worst in society ? and I'm not writing about those interred.
9
@Getreal
It's one of my biggest fear..I am single, live alone at age 63, and healthy now....but what happens if......
5
Until we all, as a society, decide to prioritize the needs of vulnerable people - the disabled, children, the elderly, abuses will continue to happen. Our most defenseless members of society are our least valued, and this is just plain wrong.
We do not revere and respect caretakers -- or teachers, social workers, etc. -- nor do we demand that only the most-qualified, best-trained individuals are chosen to train for these profession of caring for our most susceptible people. Instead, society has maintained a system in which minimal staffing, mediocre qualifications, low pay, and a "revolving door" in hiring have guaranteed that the vulnerable suffer.
The reprehensible policies of organized protection of abusers contributes further to the endangerment of these peoples' lives. When the standard for termination of abusive workers is stacked so egregiously against those who most need protection, it is clear that we are content to "warehouse" our vulnerable populations behind closed doors, and bureaucratic mindlessness.
The shame belongs to every one of us who does not step up for change - NOW.
24
OMRDD moves at a snails pace, and leaves children warehoused in hospital ERs and other places while they crawl through their formalities. New York State isn't meeting obligations for care for people who absolutely have to have it.
The funding for these homes is inadequate. In my small town, we had 5 group homes but two are closed due to lack of staff. These were excellent facilities, but they can't pay enough to retain skilled employees . Now they are selling the houses.
Ultimately though, I don't understand why these employees aren't prosecuted. This isn't a union/employer issue, this is violence and a criminal offence.
6
@Linda
I wonder if the family doesn't report the abuse because thier poor relative will be blacklisted at other facilities as a squealer or troublemaker. Not for the staff, but for the facility....
Amazing how there are suddenly "no vacancies" if a patient is unmanageable to the staff...We lived it with my brother who was a violent schizophrenic. We could NOT get him into a better home before he ultimately passed away....They communicate with each other.....
This was in upstate NY capital district.
1
What we have found is the state and agencies are always encouraging even pushing families to put their family somewhere. And while we know there are good host homes and group homes we also know stuff like this happens. Its my opinion ultimately disabled family members are families responsibility. Government historically has not done a great job of caring for people.
3
Who was it that said the measure of a society is how they treat the misfortunate? We have found the enemy and they are us. How sad.
9
My sister Wendy was a resident at Willowbrook from 1956-1974. When she was born doctors convinced my parents not to bring her home because she was so severely disabled she would not live past the age of three. She died last March at the age of 66.
From 1974-1986 she was in several group homes in Manhattan and Queens. The Manhattan one on West 90s was dark and nether my mother or I were very happy about the environment but it was an improvement over Willowbrook. After my mother passed in 1985 The state suggested they move her to a group home in Rochester NY were my wife and I live. During 30+ years here she was loved and cared for in various wonderful group homes and received incredible attention from her especially assigned "Willowbrook advocate".
My point in writing this is that for my sister the NYS law and 1993 settlement worked in a wonderful life enhancing way. The majority of people at her funeral were the caregivers and champions she had for the 30+ years she spent in group homes in Rochester. It made a huge difference in her life and my families life.
Malcolm Spaull
79
The public reaction to conditions at Willowbrook started when Time Magazine published a detailed, first hand report by Peter Stoler, not when Geraldo Rivera later made his TV report. It was that article in a major news magazine from a reporter who gained actual physical access to the inside of the institution and was also able to interview some of the staff that started the outcry. Rivera’s story followed the publication of the Time Magazine story and may have even been encouraged by it.
It is interesting to note that it was some of the medical staff at Willowbrook, concerned about the conditions there, that were able to get Stoler access to the wards.
31
Heartbreaking but hardly surprising. Whether it is adults with disabilities, children in foster care, or families from South America - our treatment of human beings placed in group settings is atrocious. As many commentators have mentioned, pay for the people who work in these difficult settings is meager. Sadly, it reflects our national priorities and the type of work we value and devalue. Caring for vulnerable adults and children should be elevated as the important, challenging and rewarding work it is. And, only with higher pay will these jobs be able to attract and retain the qualified and kind professionals required. We can and must do better.
26
Abuse happens in all settings where the developmentally disabled, live work or walk. We are never going to get rid of the need for these settings. However they can be run humanely. The solution is clear policies and protocols, ongoing training to better paid workers and especially video surveillance in these places. And, we need smaller settings with extensive oversight.
Of course without the funding...these goals can't be achieved. New Hampshire ships its very disabled out of state and the few group homes it has - no video surveillance. The rest languish at home even less supervised with aging parents or unrelated caregivers. God knows what is going on because the state has outsourced it all. Out of sight, out of mind. Thank you for profiling this NYT.
22
Over the years I have worked and spoken with hundreds of intellectual and developmental disability service providers across the United States. The ONE common theme for these private nonprofit providers - who all do great work - is the challenge of recruiting and retaining good DSPs (direct support professionals). These are the front line staff members providing direct care.
Studies have shown that there is a direct correlation of positive outcomes for consumers when there are dedicated DSPs in place. However, the extremely low reimbursement rate for DSPs set by states and paid to these service providers is not sufficient to attract enough quality people into this line of work. The national turnover rate for these vital front line staff members is in excess of 35%.
The sad reality is that one can work in a convenience store or fast food restaurant and get paid the same or more than the DSP. Meanwhile the committed DSP often times has extensive training and works every day with helping someone else's family member dress, eat, go to the bathroom, manage behavioral issues, etc. All this while keeping a positive attitude.
We all need to let our government leaders know that greater resources need to be allocated to target this real human need. It is scary that we have leaders in Washington and elsewhere calling for even more cuts in Medicare funding. It is also sad that in the wealthiest country in the world, we have such a broken healthcare system.
50
Thank you for reporting on Willowbrook. Individuals with disabilities should be able to receive services IN the community and contribute to communities as productive members of society. Institutionalization has been proven time and time again to promote exploitation and isolate individuals. The more visible and partnered we are with disabled individuals, the more enriched we are as a society. Please continue to showcase the incredible need for community group homes, oversight of group homes, and service workers (also called, SUPERHEROES) who work to support these individuals in their daily life.
4
Most of my high school years were spent on Staten Island. One of the city buses I took from Ft Wadsworth to whatever high school I was taking driver’s ed at made a loop thru Willowbrook.
This was Spring or Summer 1970.
I don’t remember that high school, not sure of exactly which months of that course, but I remember explicitly the many patients out on the grounds as the bus made its round. I remember it looking as if they were basically unattended.
As I look back, I see in my mind’s eye them in their white gowns, some seemly like diapers, upper bodies bare. Must have been Summer after all.
I can’t offer anything else to say at the moment, except that in some small way, I’m a witness to our cruelty to others. I guess I giving testimony to one of our societal wrongs.
17
@Bill in Vermont I grew up on Staten Island, born in early 1960's. The city bus that went through the grounds was, at that time, the 112. I attended Moore Catholic High School and took that bus to school each day. What you describe is accurate. I tried not to look out the window of the bus. I dreaded going through there each day. Those are very sad memories for me, I wished that I could have understood better at the time what exactly was happening there. My father was a city bus driver and he and his buddies would always try to not "pick" that route. This article is important but it brought back memories I'd rather not have been reminded of.
7
@Liz
Since we both went to Catholic schools, I guess I can best say it as thanks for the confirmation (Farrell for me).
You got me curious, so I google mapped S.I., seeing that Willowbrook is now a park, featuring a Carousel for All Children. Happy sounds now, I presume, where tears flowed not all that long ago.
I haven't been back since my parents moved when they retired early ‘73, me being away at college. Funny, of all the memories & images from those years, that of the Willowbrook bus loop is among those that are still most vivid.
7
@Bill in Vermont yes actually the College of Staten Island (CUNY) campus is located on the former grounds of Willowbrook state school. The carousel is just a stones throw from there. Thanks for the reply
2
I'm sorry, all of these posters sharing story of the abuse of their relatives at the hands of caregivers in group homes. What does it say about our society that we are not able to provide care for our beloved disabled relatives at home, but we fully expect poorly paid and untrained strangers to do so? I have a close relative who sent their disabled baby to a group home in the 1970s. They knew this child was warehoused and didn't have the best life, but they also didn't want to sacrifice the picture perfect life they had created for their normally developing children. How many of those babies and children in these photos could have lived happy lives at home if our society at that time didn't believe in perfection above all else?
14
@M - A happy life at home with family sounds very idyllic, but it is not always possible. Even families who wanted to care for the child themselves may need to turn to group homes as the affected individual gets older, larger and harder to manage by aging parents. And what will become of the child when the parents pass away? A "search for perfection" is definitely not the main reason for placing a disabled child in a group home.
16
@PM
I completely agree and think older children and adults can and should move out when it becomes necessary and well run group homes are the solution. I was referring to the children who were institutionalized since birth. There are still children's homes in NYC, where medically fragile children spend their infancy and childhoods as wards of the state, in hope of an adoptive family who is willing to care for them. It's just less common than it used to be.
3
I know of a woman writing her memoir, about being sent to a
"correctional" school in Florida in the 1970s.
There was terrible sexual and physical abuse, rape and even murder. There was no way to escape. She obviously is traumatized for life.
People locked in institutions are at the mercy of the sadists who house them.
9
Is this not an area where the billions of dollars of the Bloomberg's, Trump's & Bezos's could be employed in a way to make life better for these abandoned poor souls?
22
My adult son lives in a very good group home operated by a non-profit agency. The best corollate for quality of care is, in my mind, the wages of direct care workers who help our son stay healthy and happy. Not only does better pay mean better staff, but better pay means fewer staff vacancies, less frustration, fewer double shifts, less burn out.
While I support certain parts of the Justice Center’s mission, I know that many direct care workers here fear that they will be reported for minor infractions: My son has more than a few behavioral “issues.” At home, I can say, “Fred, (not his real name) we’re not going anywhere til you make your bed,” and he understands exactly. At his house, staff are hampered by fears that they will get in trouble for violating his rights. This does our son no favors, nor does it make for a comfortable relationship between staff and residents.
Direct care workers deserve our respect and better pay for the challenging work they do!
35
Having been abused in another facility for "normal" children around the same time you should all know that many of the perpetrators of abuse never were disciplined and got to work for the states until they retired.Some still work for the states.
Even those in State government today actively seek to hide the truth, destroy records and otherwise prevent justice for anyone who manages to remember and ask. How can a judge legally deny a person their own medical record?
10
@magicisnotreal
And getting a reporter interested is impossible. So much for journalistic idealism. The closest I came to help was an editor who promised me he would do a story if I found "evidence".
3
Please go to your legislators. People who are good and qualified to work in this field would rather work at Target where they can get paid more. I’ve been working with adults with IDD for 18 years and have seen so many good workers leave because they have to work 50-60 hours per week and multiple jobs just to make rent. This is how you end up with unqualified people just there for a paycheck. People who are exhausted and working too much. People are quick to say how much we value our community with IDD, but we don’t when it comes to advocating for them in Albany.
And please stop saying group homes. They’re community residences. And they have the minds of adults with DD, not children. They are probably as old as you are.
46
@TAF Yes! Contact representatives to demand not just better pay, but better staffing ratios. Care givers must scramble to get things done every day, with little time to give personal attention.
This causes emotional damage to workers as well as those living in institutions. These kinds of unrelenting pressures cause good people to behave badly out of frustration and anger.
We fail to see the horrors for employees, too. These conditions are what causes continuous turnover, as well.
5
This probably isn't going to be a popular opinion, but these facilities should all be closed and the people returned to their families to be cared for.
1
Many don't have family. Parents who have cared for adults with disabilities their whole lives die, there may be no siblings, or siblings who are unable to provide the level of care needed financially and/or physically.
24
@Michigan Girl some families don’t have the means or aren’t equipped. If your son or daughter has extreme behavioral or medical needs that might not be possible
19
@Michigan Girl
Your comment strikes me as highly presumptuous. Do you know anything about the lives of the families who feel they have no option but to place their IDD loved ones? Please avoid passing judgment until you truly know the entire situation.
27
https://www.disabilityscoop.com/2020/02/13/trump-budget-calls-for-cuts-to-disability-programs/27812/
8
This was published shortly after the Massachusetts legislature passed and Governor Baker, on February 13, signed "Nicky's law." In Massachusetts, The Disabled Persons Protection Commission screened 11,395 cases of alleged or potential abuse last year. In FY 2017, a total of 2,571 investigations were deemed necessary through DPPC screening. In 2017, 1,478 abuse reports were referred to the appropriate District Attorney’s Office (“DA”). Only 102 of those referrals resulted in criminal charges (less than 10%).
Nicky's Law is a mandatory abuse registry law. According to the Massachusetts ARC, "It is important to note that this bill is not a “criminal justice” bill. It is a protection against abuse and neglect and it is a way to restrict those who have been demonstrated to be abusive from working with vulnerable individuals."
As a parent with a young intellectually disabled man in transition from school to adult services, this law could not come at a better time. We fear the future, to put it frankly, even with the law. What can we do to make things as safe as possible?
Teach our kids to protect and respect themselves through self advocacy: "Nothing about us without us." But this won't work for the profoundly people in your article. I agree cameras everywhere and constant monitoring of them, along with stringent screening would help. PAY PEOPLE BETTER! Perhaps if we work with the unions to increase pay they will be willing to work to protect the disabled adults in their care.
9
That this happens in the world's wealthiest country is shameful. If a society is measured by how it treats its most vulnerable, we are doubly shamed. I also struggle to understand how those who work in these hellholes could so mistreat people.
8
There is no way that scalding bath was anything but intentional. NO ONE who can hold down a job is so ignorant or outright stupid that they don't know to test the water temperature with their own hands first before putting someone in the bath.
A civil suit against the individual workers would probably make the abusive ones change their tune right quick. It's all fun and games until you're in the bread line because your entire paycheck is spent paying for your misdeeds.
18
I’ll give Geraldo Rivera the credit where it is do for exposing the horrors of Willowbrook to the public.
6
Yes and look what has happened to him now.
1
Oh don’t get me wrong. It was the only professional respectable thing he ever did. But he did it.
4
And this is why NYC has lousy mental health facilities
3
Let’s ask evangelical Christians why there is always money for war and hush money for porn stars but not money to care for “ the least among us”
107
@WJ government priorities
@TAF No, to WJ's point, it's cultural priorities. The government reflects our culture. The megachurches are an epicenter of right-wing conservatism that starves social services-- and yet it's not like the Evangelical megachurches are stepping in to replace hamstrung government programs and helping major populations of developmentally disabled people.
13
@WJ
So true.
Texas Fined $50,000 Per Day for Foster Care Failures
11/8/2019
Texas must pay daily fines of $50,000 for not abiding by a court order requiring caretakers to maintain 24-hour supervision of children in group foster homes,adding to the more than $10 million the state has spent fighting reforms in court. The judge ordered Texas, starting Friday, to pay fines of $50,000 per day for seven business days, until Nov. 20, then fines of $100,000 a day thereafter.
In a December 2014 bench trial, Lisa Black, then-assistant commissioner of the Texas Department of Family and Protective Services’ Child Protective Services division, testified that Texas requires all group homes in the state with 13 or more children to be supervised at all hours by caretakers, according to the order.
“What is more egregious is that when Lisa Black made this statement, not one of defendants’ counsel, then-DFPS Commissioner John Specia, or any of the DFPS staff members present sought to correct this false testimony,” Jack wrote.
Judge Jack handed down the sanctions order after finding she had been under the false impression for nearly six years that all group homes with more than 12 foster children had staff providing 24-7 supervision. Jack issued a scathing order a year later writing that “rape, abuse, psychotropic medication, and instability are the norm” for children in Texas’ “broken” and understaffed foster care system.
https://www.courthousenews.com/texas-fined-50000-per-day-for-foster-care-failures/
5
There seems no end to stories about the abuse or molestation of our children whether here, the catholic church, scouts, so many other institutions. It's disheartening.
7
It is disingeneous and pathetically funny for the union rep to say the union doesn't condone abuse. When you protect abusers you are, most definitely, condoning abuse.
34
Meanwhile Trump is giving billions to the wealthy. Wants to shrink medical care for the indigent and disabled. Relishes cruel, sadistic, heartless policies.
My heart is breaking. Into so many pieces. For so many reasons.
It is Soul Destroying.
To these, the least among us.
We may not have control over Trump.
But we must screen out sadists from caring for vulnerable human beings in need of love, attention and compassion.
17
@TheraP
These abuses began long before Trump.
1
Looking at this story and the photos in my paper, tears were trickling down my face. I couldn't bear seeing it.
Even then, we were "the richest, most successful country in the world," according to - what? - propaganda?? And this is how we treated these poor, dear souls?
The shame of it. No excuse - I didn't know. Why didn't I, why didn't we????
189
@mwalsh5
Our nation started as a British colony. That irrational and wrong expectation of profitability still lives.
5
@magicisnotreal
Our nation started as a collection of British colonies, in addition to French and Spanish colonies (yes, the Southwest was Hispanic long before magats started chanting “build the wall”). And those colonies were overwhelmingly founded for two reasons: religious zealots escaping persecution in Europe and business speculators looking to get rich. And lo and behold, what two forces continue to stifle the advancement of rights and opportunities for those who aren’t wealthy white heterosexual Christian men with no disabilities? Religious zealotry and capitalism run amok. God and money is all this country seems to care about.
20
@mwalsh5
I don't know where you live but as the conditions described are pretty much the same everywhere, I have a question for you.
Are you willing to write to your elected officials and tell them to either raise your taxes or take money from other social programs to pay for even half way decent care for these people?
If not, your tears mean nothing.
16
“Their parents tried to care for them in their modest Bronx apartment, but as the family expanded to 14 children, the girls’ needs became too great.”
THIS is why contraception and abortion needs to be front and center of any work to better society for all. Christianity is responsible for that forcing poor women into having large families and it has also long sowed the pernicious myth that those who suffered such disabilities were demon-possessed or otherwise rejected by god. These ideas still infect society though the origin of them is now obscured. But I still heard them in my evangelical school in the ‘70s.
40
Thank you for bringing up the issues of birth control and family planning. Fourteen children, several of which suffer with developmental disabilities, every year or two...another baby, another baby....
I put much of the blame for such situations squarely on the Catholic Church, with it’s cruel edicts against allowing families control over their reproductive lives. Sad and disgraceful.
26
@left coast finch
This stood out to me, too.
8
@left coast finch
Sex is actually responsible, and the quality of personal decisions.
1
Once again, a story serves as a reminder of why we need investigative journalism--now, more than ever. Kudos to the NYT and the writers/researchers. A couple of issues: these torture survivors are not "alumni" or members of a "class," despite what the purveyors of torture call them. They are survivors, and some are barely surviving. It's also a reminder of how much we need the ACLU, and other social justice legal groups.
I'd be interested in the wages paid to those who work in group homes for the disabled. Bet that it's barely minimum wage. There is no excuse for cruelty and violence, but it seems the owners of such facilities make lots of money via the state and other revenue sources. They surely don't pass it on to the employees, or their charges.
23
As the parent of a 34 year-old son with extensive disabilities, I recognize this as US policy at work in all things “custodial”(the word that magically makes funding go away or stay static for decades in the public/private insurance world). Funding to hire competent staff and oversight exists in pockets throughout the system only. We saw better care and oversight in the late 20th century where I live, under the beginning of waiver programs. But without funding commensurate with staffing needs (due to an economy that offers workers better pay for lower level positions), individuals who want pay without oversight drift toward caregiver positions with the most vulnerable—people with DD and the the infirm elderly. Often these caregivers have good intentions at first, but lack the skills and supports in their jobs to maintain the difficult day-to-day giving that caregivers must deliver. And the caregivers will have seen their cost of living steadily increasing in proportion to their income. Direct caregivers are also punished more (no breaks, no vacation pay) in their roles as resources decrease. The same human nature as Willowbrook is at work. And now HIPA will conveniently prevent documentation of abuses without the permission of the paid family members or medical staff.
In the past few years my husband and I have resumed a portion of our son’s daily care, as public resources for paid caregivers are dwindling. Our son has one of the better support programs.
28
I do wonder if this attorney, Denise Berkley, has a soul...or a conscience...or even a little bit of compassion for disabled people being abused...
"The state Office for People With Developmental Disabilities, which oversees group homes, tried to fire the workers, but none lost their jobs. Strong union protections allowed them to block their dismissals in arbitration. Ultimately, allegations that had been substantiated were dropped entirely for some employees, records show.
“It’s a fair process,” said Denise Berkley, an official with the union, the Civil Service Employees Association. “Sometimes we like what the arbitrator says, sometimes we don’t.”
SO, sometimes they like what the arbitrator says about union staff beating/neglecting/attacking/not feeding/not showering/not medicating/not being kind to the patients and sometimes they don't?
And, if they don't like what the arbitrator says about their unionized employees, then they fight it.
A few hours later, they, the attorneys, like Denise Berkley, go home to their own families and children, and they know they would go into a fury if someone treated their own children or sisters or brothers or mother like that, but it's A - OK for someone else to be neglected and abused.
Nope. Sometimes they like what the arbitrator says and sometimes they don't...when they don't, the perpetrator keeps his job, and the patients keep getting abused.
Now that makes sense if you don't have a soul.
32
Excellent reporting on one of the many issues ignored by mainstream media. Marginalization perpetuates abuse. Deinstitutionalization (an important reform) decentralized the problem, (or sent people to live on the streets )and makes it hardener to identify and expose. The underfunding continues, leading to vast suffering. This story made me cry.
10
Why on earth do workers tasked with caring for our most vulnerable people have union protections that allow them to keep their jobs in the face of abuse allegations? When the victims are literally voiceless how can NYC value the caregivers' employment rights more than the suffering of the helpless? Heartbreaking story.
27
@Evergreener Good point. My guess is that most workers don't have union protection. Both my father and aunt spent their final years in assisted living facilities. I should add, good facilities. None of the workers had union protections. They made very little money, and treated the patients with compassion and kindness. Soulless people will always find a place in the world--sad and enraging.
6
@Evergreener
It’s a sick society that offers union protections to abusers but not to the workers of abusive and almost always wealthy white male employers.
3
This is painfully reminiscent of the sexual abuse scandals in the Catholic Church: helpless victims, perpetrators shielded from punishment by powerful organizations, abusers shuffled from one position to another in which they may continue to do harm. This is personal, not abstract; many, if not most of us will be exposed to such environments in the last years of our lives. Those without voices must be protected.
32
@Judith Nelson. "Their parents tried to care for them in their modest Bronx apartment, but as the family expanded to 14 children, the girls’ needs became too great. "
I had a 17 year career serving people with intellectual developmental disabilities, at the Fernald Stat School in Waltham Massachusetts and at a private agency in New York City. I was an educator and a director. I currently practice psychiatry in Texas. It is clear to me that the wonderful ideas and visions that began to proliferate in the 1980s have now fallen flat. I am specifically referring to Social Role Valorization. This is a philosophy that calls upon providers, and society as a whole, to offer service and access that values those who are at risk of devaluation. Adults with IDD don't have the mind of a child. They have the mind of an adult with IDD. This is an important distinction. People with these "disabilities" develop unpredictably. They seldom resemble children. Unfortunately, we continue to socialize them as if they are children. As an administrator, I worked to educate staff about offering adult choices that have been adapted for accessibility to individuals with IDD. This includes choice of music, recreational objects, activities, work. Folks with IDD will never be treated with respect until society and particularly care providers, recognize them as fully relevant adults who perhaps require some modifications to access the same dignified choices that we who are not so labeled, enjoy. The philosophical shift is essential. This article makes me long to return to my past career, this time as an upper level manager who can push this agenda.
121
@Alisha Jilly Roff
"Unfortunately, we continue to socialize them as if they are children."
This I believe contributes to the maltreatment folks with I/DD receive from their paid and non-paid support system.
How would you propose pushing this agenda?
2
Caring for the developmentally disabled, especially in groups, is stressful, physical demanding and often thankless as your charges are often non-verbal or aggressive. Would you want to spend 8+ hours a day doing this work for minimal pay with minimal training and support? Who would? A few kind-hearted souls and lot of people with no other options. And then we all shake our heads and wonder why the abuse continues.
93
@M Nobody is being forced into laboring at these jobs. There is absolutely no excuse for mistreating people in your charge, no matter what your circumstances are or how much you're being paid. Cruelty is cruelty. Abuse is abuse, whether it's perpetrated by a millionaire or an attendant being paid minimum wage. It is morally irresponsible for you - or anyone - to defend this sort of treatment for any reason whatsoever.
18
@M
In addition, staffing rates are too low. Caregivers must scramble to get things done each and every day. This puts tremendous pressure on workers, who become angry and hopeless. This is when abuse begins, but we don't fix staffing rates anymore than salaries.
This will continue until we address these issues.
9
@David M. Perry
Not defending anything, just wondering why we pay so little to people in incredibly physically and emotionally demanding positions. These are poorly paying, stressful jobs for "low skilled" workers. I am a social worker and have come across MANY people working in child and adult welfare who did so because their professional options were very limited and these were relatively secure government jobs. They did not have the limitless patience, empathy and compassion it takes to do that sort of work. The ensuing culture becomes one of apathy and at its very worst, cruelty.
3
perhaps one place we need better training is in regard to whistle-blowing. my first teaching job was at a state "school" for young male offenders here in Colorado. I reported a coworker to our direct supervisor for having a sexual relationship with 2 of the boys. The supervisor treated me like a tattletale and trouble maker. this co-teacher eventually helped the boys escape, setting off an expensive and dangerous manhunt to find them. I saw many kinds of abuse and neglect happening during my 3 years that were part of the status quo. as a young woman and new teacher I thought I was unable to speak up. 35 years later I realize I had a voice that I didn't know how to use.
37
Maybe the Times could implore Geraldo to go on his fav Fox News and talk to his fellow conservatives about the need for the US to pour money into social services for human decency, compassion and just plain doing the right thing. Family Values Fox? Fat chance. America will never take care of its less fortunate, non-monied, disenfranchised.
27
@Linked Maybe Liberals will stop wasting tax payer money on fraudulent impeachment investigations and pass some meaningful legislature. I guess this is all the fault of our Capitalist system.
1
People -- staff -- who are scared by the tasks they have to carry out will often react by abusing the ones causing their fears. Shall we now punish those?
4
@unification
Why should the developmentally disabled not have the same legal protections against abuse as anyone else? To say the abuse is fear driven is to cast it in as sympathetic terms as possible. Our most vulnerable should at the very least get as much protection from abuse as the rest of us.
24
@unification - are you saying that because the staff are afraid of the patients/required tasks they are entitled to kick, hit, burn etc?
It is beyond my comprehension that an individual would treat a vulnerable human being like that. Why must those who have power be so actively cruel? We are not just talking about neglect, but acts of violence perpetrated on people who are completely defenseless.
2
@unification Are you serious? Yes punish abusers.
3
I do believe at the core is the fact society does not properly fund- support this piece of humanity. It is so very easy to defund; ignore- push off. This poor art of our population is voiceless. It is a shame on societies healthy that we allow the unhealthy/ disabled to not be cared for.
The trillions the global community spend on defense- weapons- and to simply allocate the monies needed to properly care for these unfortunate souls- it’s unconscionable we do not do. Imagine that this is your child affected- simply imagine. Heartbreaking.
15
This particular situation will never be fully rehabilitated. Abuse is special care institutes is unfortunately reveals humans deep down characters.
Who is to blame? We are to blame. That includes every worker, politician and citizen of New York. All New Yorkers are to be blamed and shamed for this ongoing catastrophe that demonstrates how low and awful people are to one another. Will we ever learn? Will we ever provide the kind of money we spew into incarceration facilities or the level of training correction officers receive or the funding they receive for training that would give us a solidly trained cadre of mental health care workers? I don't think so. Because New Yorkers just don't care unless there is something in it for themselves. Selfishness, greed, maliciousness, ugliness, faithlessness, depravity, and the lack of self respect are the engines that drive New Yorkers disgusting treatment of their fellow human beings who are the most vulnerable. This is us and your lot in life may change, someday; change negatively into the type of misery these people are living today. This is happening now.
9
No excuses for these vile conditions! It is an indelible stain on every New Yorker that helpless people are being abused under the state’s care. We must hold government officials accountable. It’s hard to justify complaining about the state of this country if our own state permits such abuses to exist unchecked. These homes are notorious for this sort of neglect. Just because these poor people can’t vote is far from justifying their abandonment!
7
I'll never understand why people seem shocked that people in power abuse that power. Absolute power corrupts absolutely. That expression has been around as long as their has been language. Politicians, cops, et al. Most of our species are all psycho/sociopathic to varying degrees. We're mammals with lizard brains. We covet. We gorge. We're atavistic because it's a survival adaptation. We're ultimately tribal. And we don't function well in large tribes.
2
Thank you for covering this story.
8
A couple of thoughts: In almost all instances throughout American history the weak have been shamefully treated.
Willowbrook was very, very good for Geraldo.
4
There needs to be harsh prosecution of these sadistic torturers. instead they are being paid to do their dirty deeds, and continue to work in these jobs for years after they are discovered? there is no excuse for this. The incompetence of the oversight process has been exposed. what will we do about it? People need to be held accountable. This is criminal negligence.
5
I can't believe this is still going on in the 21st century. I thought these snake pits were a thing of the long ago past.
6
These are a special group of people who put have such feelings of insecurity and low self-regard that they must take their frustrations out on those who are so vulnerable. However, they are an absolute juggernaut to work with. It appears to be as simple as having the highest leader denying the existence of malpractice in these institutions that allows them to carry on. They've been doing this for decades, if not centuries. They've gotten really good at their craft. Yes, it's tragic that unions, who once stood up to abusive powers, now protect and cover them.
But really, such a sad, pathetic group of people.
4
How horrible! I had no idea and the 1970's weren't all that long ago. I used to live in Staten Island at the time and frequently passed Willowbrook.
3
For your next investigative report, I challenge the NYTimes reporters to look into the pay, training, on-going professional development,and support that direct care employees are provided, and how well the state is funding, supporting and monitoring the OPWDD and regional DDOs, rather than dredging up horrifying photos from the past that many of us still acutely remember and half to live with.
28
@Lynn Thitchener
I totally agree. Loving families are unable to support those with developmental disabilities at home, but expect caregivers getting paid minimum wage with limited training and little to no supervisions will somehow do a fantastic job?
12
The union members that elected Denise Brinkley should see to it she is immediately removed.
8
I'm wondering why cameras are not being used?
This union gives unions in general a bad name.
The hard part is, it takes a special kind of person to care for disabled people, and there are not many of them, and most cannot afford to work for the pay offered.
No, our priorities are all in the next quarterly report, and how stocks are doing...
Maybe, as a nation, we DESERVE to fail completely. However, looking at the current makeup of our country, and looking at the kind of people who support Trump, I'm not at all convinced that what may be coming next will be better. I fear it will be far, far worse.
I me mine, I me mine, I me mine..
Jesus weeps, I'm sure.
14
It’s a rare person who will take care of your healthy child, disabled child, adult parent, with the same amount of connection and love that a family member would. This is happening not just in disability group homes, but also in some daycare and long term care environments. I think the government should redirect the money towards the families so they can decide to stay with their loved one and hire out trusted staff when needed. The thought that we can put our family members with someone else and they will do a better job, in my opinion proves to be the wrong assumption time and time again.
17
@Cari - in this case, family members are too often tempted to keep the money for other matters
6
@Cari The toll of caring for a totally dependent family member is unbelievable, even with "relief" staff available. When it works well - the dependent person is supported and cared for in all the right ways, and the carers are supported and cared for in all the right ways - it seems to be when the carers are able-bodied themselves, and the family providing the care is large enough so that the bulk of the work does not fall to just one or two.
10
My first job put of college was in the NY system, teaching the developmentally disabled. It was a searing experience, for reasons both good and bad. I am sickened to read this story, nauseous to think that in 2020, we have not stopped allowing the abuse of this population.
There are those who will tell ypu better pay for staff is needed. After a lifetime of volunteering in the developmentally disabled community, I assure you that is not true. No amount of money buys human kindess or creates empathy where there is none.
I am weeping, flooded with memories.
37
@PaulaC. The reason the money matters is that there are in fact wonderful caregivers out there but they just can't afford to keep doing it at the pay scale. Volunteers can be wonderful, but they are just that and sometimes come with their own agendas. For a person with special needs to stay with their family, staff is important.
4
Horrifying, and unconscionable this happens still, at all, anywhere. No facility should be even operating, without proper funding, trained staff that are interested in helping others, not there because it’s a job or they couldn’t find other work. Taking out your frustration and anger because you’re not adequately paid or trained for the job you’ve been hired to do, is no excuse.
11
It’s telling the union official had to make a point to say the union does not condone abuse.
11
In the little home my brother has resided in for most of his adult life, administrators have come and gone, one allowed seconds in vegetables, and the next, had them eating frozen dinners. I had one worker tell my out-of-town sibling something I supposedly said, when I hadn’t even spoken to this worker. Started a big family fight. Some workers, it seems, like to mess with families for sport, so watch out!
22
I’m sure I’m not alone in reading this and wanting to do something. But what? How?
In the same way articles involving suicide end with the number for the hotline:
I wish articles like this included contact info for a relevant nonprofit.
For example: this article lists some organizations working locally. But I’m sure this is a nationwide problem. Are these groups national, or are there any national organizations? Readers want to know!
NYT: thanks for a great article. Please consider including, for all articles where it might be relevant, some info we readers could use if we want to follow up ourselves- it would further the impact of your reporting. Listing an organization or two need not be an endorsement, & it’s relevant to the topic. Peace
49
@Jaja One of the best things you can do to help people with developmental disabilities is to volunteer and be a friend. My son has DD, and the social isolation is one of the toughest parts. Organizations such as the Special Olympics, Best Buddies, and The Arc have chapters all over the country and provide individuals with DD the opportunity to make lasting social connections.
6
Going back to at least the beginning of the 20th century, newspapers in NYC were running stories about the mistreatment of the mentally ill and what we today call developmentally challenged.
Since then we've had the introduction of antibiotics, transplants of organs, the development of modern vaccines, and many other advances. Yet somehow we can't find a way to humanely treat these people.
And if you're looking for an answer for that, it's the same as the same one being given back more than a century ago: society has decided the government shouldn't be spending much money on their care as they are unimportant.
Remember that one of the first things Andrew Cuomo did when he became governor was to cut funding to the state's dept of mental health. And out in California both Jerry Brown and Gavin Newcomb have denigrating spending on the care of the mentally ill as a waste of money.
It's a safe bet that if it and the world are still around, The Times will still be publishing stories like this 50 years from now as it's unlikely society will care anymore about these people than it did 100 or 50 years ago or as it does now.
41
Yes...it’s about money and priorities. Pay workers more, train them, improve facilities and then esteem their work. Then watch such horrifying treatment of our most vulnerable change.
24
Sometime in the early to mid 1970’s our school took us on a field trip to Willowbrook State Hospital. I still have nightmares
33
@Merrell Gerber
Likewise, our class went to visit Willowbrook. Upon reading this and many other such articles through the years since, I am so glad that my mother had the foresight to not allow me to attend that trip.
6
Decades ago I worked at a (nonprofit) community psychiatric inpatient hospital. The care was excellent. But staff also took a 'tour' of the state mental hospital at one point. Though it did not come close to Willowbrook, it was an eye-opening and depressing experience.
When Reagan decided to close the country's "mental institutions" and relegate care to community-based centers, he also ushered in a different attitude toward people with emotional and mental struggles. Instead of warehousing them in state hospitals, they would largely be set free to live in the streets and refrigerator boxes, or passed from shelter to shelter if they could not find permanent care in a local care center.
America's care for those with developmental problems is a history of neglect, abuse, and lack of empathy. We just cannot face those who are a burden, who remind us of our worst fears, and who we cannot handle in our lives.
I feel for families who have members with severe problems, and those with the problems themselves. Maybe someday we'll figure out how to integrate everyone into communities of care, without shunting them off somewhere out of sight and love.
73
@SGK When deinstitutionalization became the new "treatment" back in the 70's the promise was that the money would follow the patients/clients into the community. That never happened and, with less scrutiny and with people needing care being scattered in many directions, the ramifications of this decision have been horrible. I'm no fan of big institutions but at least there was more concentrated oversight than exists now. My question is, when someone is beaten or otherwise abused, why isn't the perpetrator legally charged? I realize it's often difficult when the victim is non-communicative but really, training someone to tell if bath water is scalding rather than arresting them for assault is ridiculous. Where is Dorothea Dix when we need her?
31
In NY there are Not for profit alternatives that provide person centered care for individuals based on their needs, ability and desires. They have integrated services from day hab , group homes , medical and even employment services. Unfortunately, New York State continues to reduce rates year over year making it near impossible to continue to grow and expand necessary services and close down all institutional run agencies.
27
Hate to break it to you, but the non-profits have an even higher employee turnover rate (my mother works for one), because they pay even less than the state.
35
@Kevin Hogan And unfortunately some non profits - by no means all and I have zero knowledge of those involved with this sort of work - are nothing more than a means of making megamoney for the people who run them and who hide behind the veneer of respectability the NP status gives them.
9
Why is it so hard to not hire abusive people? Is it because we don't know enough about them to recognize them? Is it because, in this harsh society, they are becoming the norm? This story is shocking and upsetting and heartbreaking, but it is not new. I am left asking myself "What kind of person does this?" and that's the story we rarely tell.
101
@December
Because we've decided that those jobs should pay as little as possible. People can make as much flipping hamburgers at McDonald's and that's a lot easier work.
You find a politician willing to say your taxes should be raised to pay higher salaries.
69
@December - you asked “why is it so hard to not hire abusive people.” Ask a different question and you’ll have your answer. The question is - Are YOU willing to dedicate YOUR life to this work? No? It would be a good job for “someone else” though, right? Not for you. But for someone else. Taking care of the developmentally disabled is job for someone else. And I’m not going to pretend to holier than thou. I haven’t volunteered to do this work either.
29
@December There are cultures in which it's considered normal for parents to hit children. It is from these cultures that these workers are recruited in New York. I have a cousin in the Midwest who does this type of work and she is a very different, caring type of person. Culture matters.
15
My brother, who is severely autistic and nonverbal and has epilepsy, suffered physical abuse while in a group home in Massachusetts. When we found bruises all over his body, staff shrugged it off and said he “must have had a seizure.” At first, we didn’t do anything, wanting to trust the staff— but the bruises kept appearing.
It took a couple of years and a court process to get the state to allow us to put my brother’s Medicaid/DDS funding towards housing him in an independent facility run by the Camphill movement. Based on the beliefs of Rudolf Steiner (the founder of Waldorf schools), Camphill involves neurotypical and disabled adults living together by choice and working together on farms or in other rural settings. It’s been a godsend to my brother. I hope that others, too, are able to find alternatives to state-run institutions. Because people like my brother can’t advocate for themselves, their lives are only going to improve if we seek out better care for them.
184
@Michael He's lucky to have a good brother like you.
20
@Michael
It doesn't matter if its state run or privately run - the quality can be bad in either instance. I love the model of Camphill - but the feds make it difficult to get funding for those models because they are often characterized as "institutions" - ridiculous, but true. I am glad your brother has found a safe place! :)
12
Well done article on the abuse of developmentally disabled people.
Some thoughts: The intersection of two important themes in the Judeo-Christian heritage applies here... It involves the treatment of the least among us, but hardly the least in terms of what these people deserve. Also, the admonition to stop doing unto others that which you find aberrant makes sense in the facilities described here. A person working with disabled people does not need a religious base to know that it's wrong to treat people who are least able to protect themselves in ways that both injure and demean.
The movement to deinstitutionalize people with disabilities, both physical and intellectual, was hardly the panacea that it was purported to be at the time. Sometimes, the kinds of people working in these settings draws those with problems that make them totally unsuited to work with this population. Poor training and protection of those who have harmed others in these settings is hardly the way to bring about positive change in the lives of developmentally disabled people.
11
My brother, now 79, was at Southbury Training School. A misnomer, there was no “training”; there was no school.
I have a letter that my father sent to Southbury complaining that his 12 year old son was being forced to change the diapers of the profoundly disabled people living in the so called cottages. My brother still talks about this. He gets angry and cries. He also remembers sexual abuse.
He ran away to save his life when he was 24. My family couldn’t find him even with police involvement. He was a “street person” for many years.
A caring social worker got involved, read his records and found me on Google search.
Today, my brother has an extraordinary support person. She has made a good life possible for him. She is proof we can do better.
She certainly deserves to be paid better. What does it say about us when we are stingy in paying the people who save our lives?
231
Dog walkers get paid more than the caregivers at these facilities. Where are our priorities when it comes to the less fortunate?
283
Thanks to excellent health insurance, my parents were able to place my brother in an expensive private institution, rather than a state facility like Willowbrook. I visited as a child, it was clean and orderly. In the 60s and early 70s, there was zero support for families with handicapped children, if you couldn't cope alone with the immense needs, an institution was the only way to go. My parents had nearly reached the lifetime cap for insurance when my brother was 8. (Another fun blast from the past the GOP wants to bring back, lifetime limits on one medical issue) My father changed jobs, got new insurance and started with a new lifetime limit and moved to Massachusetts where eventually, he pushed legislation that allowed my brother to come home. So, all-in-all, my brother had a very privileged childhood compared to the children at Willowbrook or Fernald. However, the 8 years he spent in the best institution for disabled kids is a nightmare he's is terrified of getting sent back to, even 45 years later. Even at the best institutions, there's no love like there is in a family.
106
There is so little support out there for adults with ID. The general public will reply "my school has great special ed" and move on in their minds. At graduation, the individual has the rest of his or her life to live. Families are hindered by ridiculous rules in the government. We just spent most of this week trying to fill out the paperwork for Social Security to tell the government that our son's ID and autism didn't magically disappear since three years ago. My friends are doing the same with their son with Down Syndrome. Think how much money would be saved with eliminating the need for this recertification for a life long intellectual disability. BTW, one of my local councilmen ran on the platform that he would eliminate the group home ( run by a non-profit) in our town. He's a republican, of course. One in thirty boys born in NJ will have autism. The rate is a little lower for girls. These human beings will not magically disappear when they turn 21.
122
@jcs Well said! My niece is ID and has autism and lives in a group home. My sister is always saying autism nonprofits should spend less money fundraising for a "cure" and focus more on getting care and accommodations for the growing number of adults with ID and autism.
17
@jcs, I too remember filling out those endless forms each year for my precious sister who had Downs Syndrom. You are correct, it never goes away she would have Downs, all of her life.
We were very fortunate in finding a private non-profit home with 3 housemates 5 minutes from our home in eastern Massachusetts. The manager and staff were caring and responsible, some were even quite loving. Occasionally there would be one we were not happy with, but it didn't take long to have them replaced.
Eileen lived with us for 5 of her 15 years with us. The only reason we had her in the group home was because of an illness I have. I couldn't bear to think of her losing me and once again having her life turned upside down as happened when Mom died. When that happened not only did she have to lose all she knew, Mom, her home, her community, and her friends. We wanted her settled in a small home that would be stable if I was suddenly gone. As it has turned out we lost her to Alzheimer's, but the hospice care she received in her home was extraordinary.
New York State, clean up your act, you are a disgrace for one of the richest states in the nation.
1
I did my Clinical Fellowship Year at Willowbrook shortly after United Cerebral Palsy acquired it. There were some dedicated professionals and staff but they could not undo the years of abject neglect and abuse. It was a devastating environment that turned people against one another. It was scary often, to work there. But, it was a illuminating experience that I carry with me everyday. I tell people of my experiences there and like one comment, I can only hope that our 21st century obsession with cameras, puts a spotlight on these settings where these folks have landed.
With that, I would advocate for high wages, careful vetting, training and mentoring for the folks charged with taking care of these people. Why is it the services that people's very lives depend upon are always among the lowest paid and poorly trained? We are indeed, an impoverished society.
272
@Nancy Rose Steinbock
Seriously. My friend complained endlessly about paying her nanny $15 an hour while simultaneously paying her personal trainer $40 an hour. We completely undervalue the work of caring for those who are vulnerable and this is the result.
30
@M multiply $15 per hour with the number of hours it takes to provide care to a dependent and you'll have the answer
3
@Lisa
Well, if you look at it from the perspective of the mother only, then yes. 20 hours a week of child care at $15 a hour is $300. 3 hours a week of personal training is $120.
But the nanny making $15 takes home $300 for her twenty hours. The personal trainer would take home $800 for the same twenty hours.
Whose work do we value more, when we look at it from the worker's perspective?
3
Until last week, I worked with disabled young adults. I loved my job and its my calling in life to do this work. The problem is the low paid, uneducated caregivers who are there for a paycheck and don't care about serving the needs or bettering the lives of this part of the population. I left when my health became affected by the chaos. The chaos wasn't the clients I served, it was the horrible coworkers I had to deal with every day.
509
@Sheldon
A friend has been a professional consultant since the 80's and she tells me that the compensation and training for direct care employees has worsened immeasurably and turnover is very high.
108
@Keitr
There is a group home on our road.
None of the neighbors has any problem with any of the residents, but all of the neighbors are somewhat concerned that the employees may come back on a day off and rob them.
74
@Eric I don't blame them. There is a group home in my parents' neighborhood. The residents are no problem, in fact, they barely see them, but there have been a number of break-ins (cars, mostly) since it opened.
33
It's heartbreaking that this kind of abuse happens in all kinds of institutions that care for the mentally ill and the elderly. And this abusive institutions include hospitals. Nurses and caretakers need to be screened rigorously before they are hired and while employed. There are abusive individuals even in the regular workplace, as well. But we need to protect those who cannot help themselves.
139
@ART
Screen them rigorously? They have a hard enough time finding people to do this work at the lousy salaries they are offered.
Or perhaps you'd like to write to your council or assembly person or state senator asking them to raise your taxes so they can pay more and hire better people. No? I didn't think you would.
10
@ART We need to compensate caregivers appropriately - unfortunately as long as we don't value the compassion, patience and training that GOOD care requires and pay a fair wage for those skills, these horrors will continue...
11
@Steve If ever there were a reason for an actual wealth tax -- or even a Progressive system of taxation and social welfare -- this is it. We ostensibly admire people who churn stocks, bonds, other "commercial paper", etc., and who make millions of dollars for their "productivity". We do not.however, ask any of those who reap millions, or billions, of dollars to fairly contribute to the society from which they profit so excessively. Instead that burden falls increasingly on (vanishing) middle class families. Yet society as a whole sits back and wonders why there's no money to ameliorate the sufferings of our most vulnerable members. The susceptible suffer abuse, squared.
22
All of these abuses need to be reported as crimes to the local police, and prosecuted via the criminal justice system. Internal investigations are notorious for cover ups and dismissing of charges. Unions are complicit in the horrific abuses of the disabled individuals in care. More reports to the police, and less reliance on organizations to self monitor, may drive some change. Essentially, these workers are criminals, assaulting and abusing their charges.
235
@HG "All of these abuses need to be reported as crimes to the local police, and prosecuted via the criminal justice system."
And what will the police do? Will they punish somebody, or will they understand the situation and provide constructive help? It makes a difference -- and punishment just advances the cycle.
10
@unification Haven't you heard actions have consequences? at least for most of us.
6
@HG
Fine you fire all these people or even arrest them and throw them into prison.
At the low salaries being paid and the difficult nature of the work, whom do you think their replacements would be?
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The state paid $6m to THREE families? This is how you make this right? I am appalled by these families seeking money and at the state doing its best for this to go away without a plan to prevent this nightmare from happening again. Putting a non profit in charge is not a corrective action plan- it’s a different administrator.
This is what’s wrong with America- lawsuits that enrich a few (mostly lawyers) and no meaningful changes for the poor and vulnerable.
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@Angelica
Sadly, lawsuits with million dollars awards are one of the strongest forces for change. Governments skimp on care for the vulnerable and paper over the fallout. A huge payout makes them understand that they'd better fix the problem --- that they can't afford not to.
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$6 million split three ways probably won't even cover these individuals' living expenses for the rest of their lives. Your comment implies that there's some nefarious gold digging going on here by the families. In a system that's completely failed them they don't have too many choices.
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@Angelica
Spend 24 hours with one family with a child of severe special needs--the feeding tubes, the nursing staff, the special wheel chairs, refitting the house or apartment to accommodate special equipment, paying competent care providers to care for other siblings when emergency runs to the hospital are needed for the child with special needs, qualified care providers and family to watch the children so parents can enjoy a rare night out (some never take a night out)...then talk about the emotional cost to parents, other siblings, family members. No amount of money can ever compare to the cost of care for special needs children. Having been in those homes as a teacher, despite the challenges that face these families, never once did I hear them begrudge what others have--a "normal" life with no need for services.
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I spent many summers in high school and college working with some of the population from Willowbrook. It was one one of best experiences of my life. I wasn't and I'm not a social worker but the time at Camp Wilton shaped me and my perspectives on how we should treat people.
The emotional and physical scars were real as was the fear our campers had even years later from the serial abuse. It saddens me greatly to read this and to realize that "we" have not learned anything in the 40 years since the tragedy of Willowbrook.
'Willingly and with Love' was our motto at camp wilton. perhaps the folks at these group homes could follow the same edict. Would it really be that hard... I can tell you from experience that it's not.
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We had our own state schools in Ct.
The original intent was a noble cause.
Many disabled were in dire straits.
Families felt shame and disgust. The families were cruel at times and the churches decided something must be done to assist these unfortunate babies and children. The government stepped in and by post WW 1 the institutionalization process had begun for the disabled and mentally compromised. The wealthy had places to go like The Institute of Living or Elmcrest..., the poor got Southbury Training School and Middletowns city on a hill filled with the mentally ill and the consumption victims too.
Reagan started the closure process thru gradual defunding. States tried to maintain the care levels but staffing per patient ratio was deplorable. And then abuse of patients became rampant. Those that reported fellow co workers were harassed by union stewards. And bad employees got to remain to abuse another day. It was a vicious cycle. And now those times have translated into what we see in our diverse homeless population. We have a long road back to pragmatic proposals to help families care for their most vulnerable members. And leadership and inspiration is lacking. I do not see mellenials addressing these obstacles for society. It is time for them to come forward with leadership and solutions. Boomers would love to hear your fresh take on societal conundrums like this problem.
It won’t go away but we must manage it well. And we must memorialize the victims of abuse.
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@Maggie, No, it was Reagan.
2
This is a place (and these people) that should be absolutely blanketed with cameras and microphones. Families and legal guardians should be able to view them at any time and the footage should be stored.
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@Melissa Nicholson I agree and this step seems obvious ... even if it begins as an upgrade that has a cost that a family or donation needs to cover. Which leads to the question, if anyone might know, do the unions block such actions to protect their “members”?
14
Yes, that is a no brainer. Why is this not being done? Come on bureaucrats, do the right thing here!
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@Melissa Nicholson
That is an excellent idea.
There are doggy day cares all over with cameras, so you can watch your dog when you're at work.
Why on Earth would we not have cameras here?
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