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Online
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 article was
great....thank-you. Will the dentist go to jail?
sincerely
Marilyn
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 haven't been implemented
because they haven't 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 don't think I've
done a story in the last five years where I haven't 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 vast 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 Administration 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 advocacy 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 perspective 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 management program has been written for
the person which states restraints are to be used as a
last resort, when other methods of management 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:Ii'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 Program, 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
individuals 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 believe 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 haven't heard anything
about why he didnt show. i don't 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 don't 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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