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Katherine Boo on 'Invisible Deaths'

Washington Post Staff Writer Katharine Boo is the author of "Invisible Deaths: The Fatal Neglect of D.C.'s Retarded," a Post investigative piece that ran on Sunday. She also wrote "Invisible Lives: D.C.'s Troubled System for the Retarded" in March.

Boo has been an investigative reporter for The Post since 1993, specializing in subjects that affect the poor. A native of the District, she was an editor at the Washington City Paper and The Washington Monthly before coming to The Post.

Boo was Live Online on Monday (read the transcript). Several people asked what they could to help, and Boo wrote up a list. She got so many questions, we asked her to join us again today.


Shelbyville Indiana: I am the father of a 20 year-old daughter with Down syndrome. I cannot adequately describe how disturbed I was to read your articles. I long ago vowed to keep my girl in my home until I draw my last breath. You and all of your readers now know why. In what manner of society do we live when the most helpless among us are treated this way?

Katherine Boo: shelbyville your letter moves me, and reminds me of someone i met in the course of doing the story--a 79-year-old woman whose middle-aged son lived in the group homes. she said, "i am so scared about what will happen to him that i feel like i'm not allowed to die."

Washington, DC: Do you know of any directory or list, online or elsewhere, that can help us know where group homes and similar facilities are located? I am wondering if local citizens' associations, ANCs, and other concerned groups could "adopt" the facilities in their area to make sure conditions are up to par...? Thanks for your great work!

Katherine Boo: interesting idea. you can get a list of all the community residential facilities in the district by contacting the department of health, which licenses them. the number is--i hope this is right--202-442-9195

Alexandria: Alexandria, VA:

Thank you for your marvelous exposé. You have bravely followed your stories of last spring
to their devastating conclusion. I hope you persevere.

St. Coletta School, located in Alexandria VA, serves students with mental retardation and autism. It also has a
Day Support Program for disabled adults. Despite the fact that St. Coletta holds a Medicaid license, it has been
unable to get a contract with DC. Two young adults , who have aged-out of the school program, have been
attending the Day Support Program at no cost because the school and the families were worried about their
safety in the city’s programs. MRDDA officials have told parents that their children may attend PSI but not St.
Coletta. Why not, when the fees at St. Coletta are half those at for-profit organizations like PSI?

I have several question for you:
1. What advantage do MRDDA officials receive for referring clients to programs such as PSI and VOCA,
rather than a higher quality, lower cost non-profit alternative?
2. Why in DC do the for-profit companies predominate in providing services to the mentally retarded
community, when everywhere else it is the non-profit sector which leads the way?
3. Have you considered investigating group homes for children? There are many abuses there, as well.
4. Will you profile good group home providers, such as the Community of the Ark -L’Arche-?
5. Did you find out what, if anything, DC ARC -Association of Retarded Citizens- is doing to improve things
through its advocacy role?

Thanks. Keep up the good work.

Katherine Boo: the questions you ask are crucial ones, st. colletta's, and we're still working on the answers. your last question about good programs invokes something very important. it's hard to know what's wrong until you see what's
right. in march i wrote about some of the system's good group homes, and how their efforts to serve more people--and greatly lower cost--were rebuffed by the district government.

Washington D.C.: A comment: David Abney, who is one of your deaths at VOCA group home on First Street SE, died of
aspiration pneumonia. His case manager was told that there would be an autopsy, but then the body was taken
off by the funeral home without an autopsy.

Katherine Boo: David Abney, a young man with cerebral palsy, was one of several individuals i came across who were sent to the morgue but released without explanation, or autopsy.

Muskegon, Mi: The atrocities in Eastern Europe are no worse than what is happing to those people in the capital of the United States. Your articule was great....thank-you. Will the dentist go to jail?

Katherine Boo: we'll see.

Berryville, VA : There were a couple of references in the article to things falling through the cracks because DC lawyers had not written the regulations. How come?

Katherine Boo: i guess the laws allowing monetary sanctions on group homes havent been implemented because they havent been seen to date as a priority. i am hearing they may be implemented now.

Chandler, Arizona: Katherine: I heard your interview on NPR's All Things Considered this afternoon and then read your story on the website this evening. I was struck by the compassion I heard in your voice and as well as tone of your writing. I have come to believe that having compassion for others in the single most important component in one's own happiness. Would you please comment on how you came to specialize in issues affecting the less fortunate members of society and how you have been affected by your work?

Katherine Boo: hard to say exactly why i started doing it--i tend distrust neat answers to questions about complex motives. but i can say with certainty why, after starting, i kept doing
it--and that reason isn't selfless. i dont think i've done a story in the last five years where i havent been moved, amazed, inspired.

Laurel, MD: I am originally from NY, and I have been in the field of Human Services for the past 10 yrs. In my experience I must say that D.C., and MD do not have high standards when it comes to the special population. My question is, why is it that tragedies like this have to occur in order for the government to recognize that a large majority of these people are not being given
the quality of care that they deserve? Why aren't applicants screened more carefully before being placed into these group home environments? You have to go through a lot of red tape just to get a job at the local grocery store, however, it is very easy to obtain a job as a residential counselor. I commend you for shedding some light on this situation. Each and every one of these individuals is a member of society, and it is about time that we stand up and fight for those who cannot fight for themselves.

Katherine Boo: why do tragedies have to occur before governments take notice? i think a lot about that question, but i dont know the answer.

Baltimore, MD: I work as a state appointed advocate for individuals with developmental disabilities here in Maryland. Your article made me cry. It has deeply affected myself, as well as all of my co-workers. It was startling to see the drast differences between MD and DC. Here in MD, not only is every death investigated but every trip to the emergency room must be documented and reported. The agency is required to submit documentation regarding the nature of the visit, the results, and follow-up that was taken. This is submitted to the Developmental Disability Administartion and to Licensing and Certification for review and follow up if necessary. A report is also sent to our agency, which has a contract with the state to provide advocay and service coordination services to the developmentally disabled. Also, the regulations to open a group home are extensive. The agency also has to be a non-profit agency. Agencies and their group homes are inspected twice a year, by the state and by HCFA. In addition we as service coordinators conducted bi-monthly visits and conduct file reviews. Also, all prespective employees must have a background check performed and be fingerprinted. No prior convictions are allowed. All employees are required to completed required training, including management of disruptive behavior. And no one is allowed to be restrained unless a detailed behavior managment program has been written for the person which states retraints are to be used as a last resort, when other methods of managment have been unsuccessful. Federal law mandates that areas receiving Medicaid funding are required to provide a service-resource coordinator-advocate for every individual receiving the funding. Where were these advocates?!
I think a key issue is that several of these agencies are for-profit agencies. The bottom line for them is how much profit they can generate, not the quality of care they provide. Thank you for opening my eyes to this situation. I plan to make a lot of calls.

Katherine Boo: i've been learning a lot in the last week about other states and what they do. in vermont, new hampshire, maryland and other states, deaths are taken very seriously by public officials, and the group home providers document their deaths accordingly.

Bethesda, MD:
It's so disgusting. I'd love to see a federal takeover of this so called system. When you have felons "caring for" mentally handicapped, the system has failed. It's time to throw them all out and start from scratch.
[edited for space]

Katherine Boo: i've been hearing this a lot.

Washingtonpost.com: FYI: A better phone number at the D.C. Department of Health, for group home licensing information, may be: (202) 442-5888. We actually got a human being when we called that one.

baltimore, Md: Hi Katherine. I'm a young reporter aspiring to do investigative work.

My question is, when all the places you traditionally go for answers say no, what do you do? Do you look for former employees of the agency? Do people call you with leads, and if so, how to you substantiate the validity of those leads? How long does a project like this take, and do you have daily duties at the Post besides gathering string for a story like this?

Any advice would be much appreciated! Thanks.

Katherine Boo: i think you cast the widest possible net, make every call that you can think of, and then you hope. leaks make me nervous--give me visions of christmas in libel jail. i like documents better. and i love the freedom of information act! good luck...

Los Angeles, California: Hello Katherine, I can't begin to tell you all of the emotions that your articles have once again stirred in me. I have been following your stories, on-line, since moving out here a year and a half ago. Having worked in the system directly that you are reporting on -from Forest Haven to the Pratt Monitoring Pogram, I am very aware of the problems that occur on a daily basis. I am over-whelmed at the wonderful writing of the article and thank you for doing all of the investigating. I knew many of the individuals that were named, as well as did some follow-up on a few of their deaths. I am wondering, to what extent you were able to access the quarterly reports prepared for the court, overseeing the implementation of the Pratt Decree, and any other documents from that office? I know that over the years, the magnitude of the Court Monitor dwindled, but surely valuable information could be obtained. I am assuming, however, that those documents may also be protected? I am now working in the delivery of services to indiviudals with disabilities here in LA. I have found that some of the same problems exist here-often relating directly to the level of training that we provide to the care-givers. I do beleive that is where we need to start our reform, after shifting the money out of the Director's hands, and into those receiving the services and to those who actually care for them on a daily basis. I wish the Brandenburg family much luck in their fight for justice. THANKS AGAIN!

Katherine Boo: thanks for your letter. and you're right: much of what the court monitor writes is not available to the public.

Alexandria, Virginia: I was at the ADAPT candlelight vigil last night which took place in front of the Mayor's office. He was supposed to come but never showed--which to me is very telling of his level of interest in this tragedy.
Do you know why he didn't show?

Katherine Boo: sorry i havent heard anything about why he didnt show. i dont know...

Washington, DC: Katherine,

Thank you for this very important article. I read the last series you wrote and was horrified to find out that the conditions haven't changed.

I am the mother of an 18 year old autistic daughter. It is becoming increasingly difficult for me to care for her at home, as she is becoming somewhat aggressive. I have been thinking of having her placed in a residential environment, but have done a complete 180 after reading about the deplorable conditions of these homes.

Please direct me to a caring, loving group home if you know of any.

Thanks again for all of your hard work.

Katherine Boo: why dont you give me a call this afternoon at 202-334-6054.

Washingtonpost.com: Katherine also welcomes e-mail. Her e-mail address is book@washpost.com.

Hyattsville,Md: I work in a group home for the mentally challenged and I've had concerns about the amount of money the government gives to these homes to waste and steal.The company I work for, which was mentioned in the paper on Sunday, only require that you submit receipts no one ever checks to see that the wards are getting what they should.And the condition that their clothes are in is a punishable crime,or should be.So the question is whose attention do you bring this to?

Katherine Boo: it was interesting to me, in doing the story, how clients' funds were handled, or mishandled, by their group homes. where to report your concerns? the department of health has apparently set up a hot-line to report problems. let me know what happens when and if you decide to call...

Maryland: I work in a group home and was wondering who do you report mishandling of the clients funds,and-or money obtain though government funds.I have seen clients money being spent on supervisors and their families.As long as receipts are turn in no one checks to see if these poor people are benefiting from that money.The clients have to wear each others clothes and the clothes are in horrible condition.Staff go grocery shopping and stock their own pantries at home while the clients eat the same processed food all the time.And their medical care is a joke! Old orders from Forest Haven still being given without the clients being revaluated,nurses giving medication without water to make sure it goes down .The list goes on and on in these places.Who is accountable?Who do you report this too?And when will it stop?

Katherine Boo: variations on a theme here. thanks

Washington, DC: Thank you for your work. I appreciated your mention of DC Special Olympics as a good program. I worked as a staff person there for four years. I can tell you that we did not know about any of what you have uncovered. Everyone there was totally committed to helping the individuals in our program, many of whom lived in DC programs. Had the staff and volunteers been aware of any of this, we could have helped, perhaps. It seems ironic that we were working so hard to set up and run recreation and sports training programs for people who were living in life-threatening situations, unbeknownst to us. This, I guess, is what abuse and powerlessness is. Thank you again.

Katherine Boo: thanks for your note.

Washington, DC: As a relative of a deceased member of the group homes cited Sunday, I am hard pressed now to revisit the loss of my only brother. But in view of the current investigation and the pending lawsuit, protest, etc. I just want to say that I would only wish that any corrective measures outside criminal charges for proven ills, take the form of any monetary awards being put to a fund to train people in the caring of mentally handicapped people. I think that in memory of those who died, loved regardless of their handicapped by at least my family members, any funds resulting from lawsuits should be set into a fund to care for the mentally handicapped, and specifically TRAIN people in the care of same. It would sicken me to see any resultant gains put to any other use, or any personal use by those who lost family members through this alleged mass neglect.

Katherine Boo: powerfully said.

Washington, DC: Thanks for your great work.......you deserve the Pulitzer for exposing this tragedy.

Did the DC Medical Examiner give an explanation as to why these people were so disrespected? ie., unauthorized cremations, buried with "numbered markers". These people have identities and families.

It's very sad that DC & society would sink this low..........poor care in the homes, no respect in death.

Katherine Boo: the numbered markers--as opposed to tombstones--were a source of cost-savings for the district government, as were the cremations. not doing autopsies saved money, too.

Fairfax VA: Katherine,

From the follow-on articles, it looks like a
hornets nest has been given a good shake - admissions that the system is broken, etc...
My concern is a course of investigations and rounding up "the usual suspects" takes time. Is there any possiblity of an immediate "safe house" where D.C.'s clients can have their needs and health evaluated? Have there been
any offers within or outside the D.C. system?

Katherine Boo: good question to which i dont know the answer. i am hearing that some nonprofit providers--including st. colletta's, which wrote in earlier--have offered to set up programs in short order. where that stands at DHS and Medicaid, i dont know.

Washington, DC: How are you? I am a volunteer advocate for the mental retardation program! I became an advocate after reading your article regarding Forest Haven. I was then assigned a patient in August after taking a certification with the DC Superior Court. Since then, I have not yet made any visible contact with my client. What else can be done to expedite the process for these people? I am someone who would really like to help out! It is very difficult to do anything with the system being as disorganized and disfunctional as it is! Where does it stop?

Katherine Boo: idealism-squandering here. always bums me out, when people with good intentions get thwarted by bureaucracy. six months later and you're not having contact with your client? i would like to know more.

Raleigh, NC: 1. Does the District accept clients from other states?-. . .Send clients outside the District to other states for care?
2. How much monetary support per client do the care providers receive from federal-local gov't? Do they have any out-of-pocket expenses?
3. Is there sufficient interest from a District Attorney or equivalent to ensure these atrocities stop?

Katherine Boo: the district sends a very small number of clients to facilities out of state. several people with autism are in a program in west virginia, for example. as for the federal money, that is intricately connected to the "level of care" each individual is deemed to need. the sicker the person, the greater the reimbursement.

Barrington, Illinois: Your report is excellent. Unfortunately you could duplicate this in other states for the same conditions. It is outrageous how our civilized nation or so we call it, treat our most vulnerable citizens. When will anyone, owners, administrators as well as other licensed caregivers be held accountable for the neglect & abuse. Until someone is in jail for manslaughter and homicide, nothing will change!

Katherine Boo: which reminds me, i'd love to know what other reporters have found, or are finding, in other states.

washington, dc: Great series, Ms. Boo! My question is, in your opinion, why are not ALL inspections SURPRISE inspections rather than announced inspections? Surprise inspections would seem to be more revelatory.

Katherine Boo: i share your opinion, washington.

Silver Spring: It saddens me to see the treatment the disabled get in the group home environment. In essence, they are children in adult bodies. They have either been abandoned or are unable to be cared for by family members.
Do all group homes in the District exist in such deplorable conditions? If not, would it be possible to present a positive group home setting so that the public gets a view of both sides. What is being done about family participation? These clients need there families on a regular basis, not when the possibility of a lawsuit exist.

Katherine Boo: man, it makes such a difference, whether families are involved. involved regularly. but most clients don't have that luck...

Chapel Hill, North Carolina: How many people live in a typical group home in DC? Do you see this as a factor in the problem?

What kinds of services in additon to shelter are the residents offered to provide a decent quality of life?

Do the residents have the right to participate in planning their lives, to choose homes, house-mates, food, all that the rest of us choose every day?

Did you learn of any examples of such incredible abuse outside of DC?

Katherine Boo: the typical group home has six to eight people living in it. as for services, the district promises some of the most elaborate and expensive in the country. the question is whether those services, which are funded by public money, are always delivered to the clients.

Winchester, MA: I heard you on All Things Considered on Monday and was stunned. Thanks to the wonders of the Internet I have been able to read your articles. Wonderful job! Thank you. I have two questions:
1- Do you think the situation you describe is an anomaly? Or are there other locations in the US where one might find similar situations?
2- Are you familiar with the work of Dr. Wolf Wolfensberger? Particularly his theory of Social Role Valorization -SRV-. I ask because it is relevant to the "commodification" of devalued people but also because the title bar on the Show Document window in the articles has "...wp-srv-local...." and I just wondered if that was just a coincidence or what.
Thank you for powerfully focussing attention on this issue.

Katherine Boo: thanks. sort of fitting to wind up with two questions i dont know the answer to. an anomaly? i hope other reporters will find out and let me know...

Washingtonpost.com: On this issue of the URL wp-srv -- it's just a coincidence. I believe that stands for washington post server!

Washington, DC: On behalf of the congressionally-mandated nationwide legal advocacy network for people with disabilities – the Protection and Advocacy -P&A- System – I want to express appreciation for your articles, and to explain the important role of the P&A System on this issue. P&As, which have been in operation since the mid-70s, have unique federal authority to investigate abuse and neglect and other rights violations, to access records of individuals with disabilities, and to monitor conditions in group homes and other facilities. The designated P&A for the District -University Legal Services- has been engaged with the City for some time in efforts to reform the group home system for people with mental retardation. Your articles highlight the importance of monitoring by an independent legal entity, at the state level, with legal authority. The DC P&A and other P&A agencies throughout the country are doing what they can to address these abuses in group homes. Based on your experience covering this issue, what suggestions do you have for independent monitoring and advocacy for group home residents?

Katherine Boo: my advice is to listen: to the direct care workers themselves, and to the clients. check the ambulance records and the hospital records. follow the paper trail.

Washingtonpost.com: Our thanks to Katherine Boo for another fascinating discussion. And thanks to all of you readers for your probing and moving questions.

Katherine Boo: yeah the questions have been pretty amazing. thank you guys...

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