90.9 WBUR - Boston's NPR news station
Top Stories:
PLEDGE NOW
Here and Now with Robin Young
Public radio's live
midday news program
With sponsorship from
Mathworks - Accelerating the pace of engineering and science
Accelerating the pace
of engineering and science
Tuesday, February 14, 2012

Developmentally Disabled ‘Abused & Used’ At New York State Group Homes

Some of the most gripping reporting of the past year has been a special investigative series, called “Abused and Used,” done by the New York Times on the more than 2,000 group homes for the developmentally disabled in New York state.

These homes were created as a way to correct abuses in the past, but now they are where new forms of abuse and neglect are happening.

Why Were Group Homes Created?

Before 1972, the developmentally disabled were largely warehoused in huge facilities in the state. But in 1972, TV reporter Geraldo Rivera did an expose on one home, Willowbrook, with a doctor who blew the whistle on horrifying conditions there.

Rivera said, “It was horrible.  There was one attendant for perhaps 50 severely and profoundly retarded children.”

The doctor told Rivera, “The ones that we saw were the most severely and profoundly retarded, there are thousands there like that, not going to school, sitting on the ward all day, not being talked to by anyone.”

The photos of young people, crawling in their own feces, were shocking.  A class action lawsuit was filed against the state and later federal laws would be drawn up to give civil rights to the institutionalized.

New York and other states emptied their warehouses, started group homes and companies grew to run them, taking in billions of dollars in state aid. Families of the disabled felt relief, some for the first time.

Abuse At Group Homes

But a New York Times series finds that things have once again gone terribly wrong.

Reporters uncovered cases of patient abuse by low paid staffers who were transferred rather than fired, and overpaid executives who were never charged for misusing state dollars. A whistle blower describes the system as a cult. The Times describes New York state’s relationship with one care provider as a spouse caught in a bad marriage.

Their reporting has already forced changes in New York, and other states are listening in.

Guest:

  • Danny Hakim, Albany bureau chief for the New York Times and series co-writer

Please follow our community rules when engaging in comment discussion on this site.
  • Beth Zwick

    Great job!  A very, very important story– I hope you continue to follow it and keep us fully informed.

    But please remember that we don’t use the “R” word anymore– the preferable term is “cognitively disabled.”  ”Retarded” is considered demeaning in 2012.

    • Krrimarte

      It’s actually “Intellectually Disabled” , because “cognitively disabled” suggest that the person isn’t able to think (a vegatative state).

  • David T

    This is just one more example of what a mistake “privatizing” public functions can be. I’m so tired of hearing conservatives talking about how the private sector can do many functions more effectively. Effective for whom? The executives!!

    • Jl

      Exactly. Directors in these agencies often make 10x and more what the direct support workers make who actually do the real work in a difficult environment. The residents really don’t have a voice at the end of the day and neither do the caregivers. Problems could be often circumvented if someone was listening.

      • Krrimarte

         I work in the field (in Texas) and I have to say that I’ve seen both sides of the coin on this subject. The first place I worked, I was SHL PRN and the place was awful. It was the “hurry up and wait” kind of place where the CEO was more worried about what color the paint in the new group home was, than if the people were actually happy and active.

        That said, the company that I currently work for has a CEO who DONATED her house, when they needed to open another grouphome, and goes out of her way to make sure that their wants and needs are addressed. She personally knows every single client. She makes sure that the staff receive above competitive pay, so they have incentive to actually work. Like with every care service, there are some hiccups, but we are working on those. There are good care providers, and dayhabs, but they may be few and far between.

  • Velvinette

    The parents of disabled people are also encouraged to put their kids in a group home even when they are young and able to care for them, with the idea that they will learn to be independent while the parents are still around, instead of losing the parents and having to make that adjustment all at once.  There is a value in that for some people, especially in the case of someone with Down Syndrome who does not have decades ahead in life and who also are very social beings, often.  But for many disabled people, living in a nice house with their parents and taking part in activities in regular society, without being marginalized into what amounts to a segregated housing situation or grouped with people with a label is very much preferred and beneficial.  After hearing your report, I wonder if people are not funneled into these homes to help support the industry that has grown up around them.  People on the autism spectrum can continue to learn, advance in school, build careers and friendships in life.  They are nowhere near their developmental potential at age 22, when they age out of the school system.  They are relatively new on the list of disabilities now being sent to school and trained for jobs, having been, just a generation or so ago being put into institutions at a fairly early age and often subjected to what most people would feel were barbaric behavior modification practices if they were to be done on them.  Temple Grandin, the poster-person for someone with autism who has an advanced degree and is a professor, lecturer and author, is 65, and her parents completely bucked the advice of doctors and professionals when she was a child and did not institutionalize her.  Self-determination, for the disabled, the mentally ill and others, needs to be strengthened legally, as it has been here in MA.  Let them decide where they should live.  Teach them to call 911.  I know that’s not always practical but it’s a good place to start.  

  • Anonymous

    Even though there surely has been progress in the field overall, the DayHab, or day program, unfortunately can become a 6 to 8 hour institution, where folks from the homes are left for the day in understaffed, under trained environments.
    Thoughts on day centers?

    • Dflrermoen

      This is a sad place. No one else in life is asked to spend their day sitting with others an waiting for the clock to say 3:00pm . The goverment should out law dayprogram. this would force them to treat them as people not just money making oppt.

      • DanielmMalone

        Check out angel guardians.org and their day program called AngelWorks. This place rocks!

      • Krrimarte

        “No one else in life is asked to spend their day sitting with others an waiting for the clock to say 3:00pm”

        This was my EXACT argument against standardized education.

  • Anonymous

    I work in the mental health field for a non-profit agency in a residential program.  When I started my job I was shocked at the quality of many of the direct care staff.  While there are many caring and qualified people working in these jobs who do an incredible job dealing with a very difficult population, there are many others who do not belong there.  The pay is so low many employees work well over 40 hours a week resulting in either no patience or sleeping on the job.  Many of my co-workers are immigrants from other countries who have poor English speaking and writing skills making communication difficult.  While I have not witnessed any physical abuse, I have heared threats made.  Many employees are there because they heard it was an easy job which if is when you spend most of your time on Facebook or surfing the Internet while paying no attention to the clients.  Until these jobs become valued by society the abuses will continue.

    • Dflrermoen

      I agree this is why we need to value Family . and not think that gov. agency is the way to help our people.

  • Dflrermoen

    I welcome this  talk regarding this subject. I am a mother with a 27yr. with disablities I know the hardship of this life.
    The goverment needs to realize that family is the #1 best place for the person. I fine that the goverment thinks that the support is best by some one else. I know not all families are willing to help their child but families that want to help their family member should be the first the goverment helps to keep the person with this life long disablily with family.

     They rather give $ to agencies that leave the person sitting for hours in a day without interaction with others or offer crafts and borning activities that brings on behavors that brings on the beating. 
     Agencies should be considered as  a second choice not as #1 choice. I have not been able to work full time since he finished H-school.
     I am told if I use my hours that the goverment gives me to allow a respite worker take him to a little job and to the gym I am not allowed to work  those 4 hours. my son has CP the goverment  pays me 2hours a day to help him with bathing and shaving and doc. appt. meals ect.. But agancies are paid to keep people like him in small day progams in small rooms sitting all day . At times he comes home saying ” My butt hurts” because he has sat all day.  Yes they should offer activities for a productive life. But this life is not a life No one else is asked to live this way . but my son is offered very little.
     When family finds ways to create a life for their family member we find no support. The agancy told me if I wanted help with a job coach I would have to find two other persons with disablities to go to the job site with my son. In any other persons life no one is required to bring  two other friends to work.   Why is this okay for a person with disablities?  
     My nightmare is that I will someday have to release him to a group home and His nightmare will began . I am in my 50′s hoping that I will live a long time and stay heathly to care for him. I say when family wants to keep and love their family member goverment should support the family.  Many families need to work just to keep food on the table and when goverment says the support we give you cannot be combine with any other income then they leave no other choice but to release them to outside agancies that struggle with finding good people low pay with high stress.

    • Krrimarte

       I work for a council that provides services to people with intellectual disabilities. All I have to say is, yes, family would be  a great option, however most of the families I’ve seen are the sources of serious abuse, and are often the reason that the person has been brought to our care.

      Furthermore, not every dayhab is as you have described. Perhaps you need to speak to your son’s casemanager and look into your options. 

  • CNY

    I work for the State of NY in a group home.  While I agree with the cases cited by the NY Times, they are a small fraction of the big picture. 

    When Geraldo exposed Willowbrook in the early 70′s many changes were put into place to protect these people.  I have worked 20 plus years and have encountered very few employees who were abusive.  The overwelming majority were caring and loving people who treat these folks like family.  Of course that does not make for good headlines.  On a whole these people live much happier and fuller lifes after moving into the group homes and out of the developmental centers. 

    We the state workers have been misrepresented by the media.  A good example is the story that ran after the NY Times article.  It was about an employee who used a cattle prod on a consumer.  Big headline, yes, but not so big when the story came out that it was a false accusation by a co-worker. 

    Presently NY State is begining a 5 year plan ( not formally announced ) to get out of the business of taking care of the developmentaly disabled.  This will result in these people receiving worse care.  Private agencies will pick up the slack left by the state, and all in the name of profits. 

    • Cak12

      This has become a big problem lately. DSPs have always been poorly paid, poorly trained and treated with very little respect. This is the other side of the story and now that the media has begun this smear campaign against those who work in the lowest positions in the dd field, workers who have dedicated years to their jobs and respective agencies are being thrown out into the street with very little recourse or defense for themselves. These agencies and in particular the middle management and the so-called “chain-of-command” in these agencies are indeed very much like a cult. Especially if you open your mouth to question the care of the guys or management or even to defend yourself against harassment or favoritism or false accusations by co-workers or overblown charges against direct support by management. If you dare to open your mouth, they will destroy your life if they can get away with it. And with the current climate created by the media you are assumed to be guilty until proven innocent. This is the little known “other side” to these stories. Abuse of any resident must not be allowed to happen, and abuse of Direct Support workers needs to stop as well.

  • Jeff Gentry

    We’re incredibly thankful for the careful reporting by Mr. Hakim and the coverage the New York Times and Here and Now has provided for this serious social issue. Although by all accounts people with disabilities experience disproportionate amounts of abuse – a 2008 Department of Justice report found that people of all ages with disabilities were twice as likely to be physically or sexually abused than their nondisabled peers – Massachusetts is a leader in abuse prevention for this vulnerable population.

    Triangle’s Robert Wood Johnson Foundation supported IMPACT:Ability program is currently partnering with the Massachusetts Department of Developmental Services, Boston Public Schools, and within our organization to empower individuals with disabilites and organizations to prevent abuse. You can learn more about IMPACT:Ability at our website: http://www.triangle-inc.org/index.php/impact_ability/.

  • Judy Austin

     I heard only part of the segment
    on NY group homes this morning (in Idaho), but enough to get the general
    idea.  I can, happily, offer a somewhat different perspective.  My
    stepson, 28, is autistic.  He is also a college student–moving slowly
    because while he is quite bright he doesn’t comprehend the learning
    process very well–and lives now in an apartment with one other
    special-needs young man and full-time staff present more for the other
    person than for him.

    However, when he was in
    the 5th grade his parents were divorced, and eventually his mother had
    to go to work.  She tried after-school help with Ian, but nothing seemed
    to work right.  So she (and his dad) finally decided to place him in a
    group home.  He lived there for 10 years–and he will tell you that it
    was the
    best experience of his life.  Six kids/young men, two full-time
    (female) resident staff and a supervisor, one of three or four such
    homes owned and run by a clinical psychologist and his wife–who is the
    mother of a Downs young man.  The guidance and training in the group
    home, fully communicated to and supported by Ian’s three parents, made
    it possible for him to take responsibility for his own living.  He still
    often spends holidays at the group home, and he counts both staff and
    residents good friends.  The home is fully licensed and checked by the
    state department of health and welfare, of course, but most of all it is
    run and staffed by people who want the best possible lives for the
    residents.  Would that New York could do so well….

    Judy Austin

Robin and Jeremy

Robin Young and Jeremy Hobson host Here & Now, a live two-hour production of NPR and WBUR Boston.

April 14 4 Comments

Lessons For News Media After Marathon Bombings

We take a look at what the news media got wrong and what can be learned for future breaking news coverage.

April 14 7 Comments

Marathon Bombing Survivor Loses Limbs But Finds New Life

A year after Jeff Bauman lost both legs in the bombing, he and his fiancée are expecting their first child.

April 11 9 Comments

Inside The World Of Fast Fashion

New styles go from runway to retailer at warp speed. We look at the impact of "fast fashion" and who's behind it.

April 11 3 Comments

Denver Mayor Visits Amsterdam Mayor

Worried about what legalized recreational marijuana means for Denver, Michael Hancock is speaking to his counterpart in Amsterdam.