CSEA HISTORY PROJECT
PAUL CASTELLANI INTERVIEW
March 7, 2006
INTERVIEWER: On the record. This is
March the 7th, Tuesday, March the 7th, 2006, and
we're speaking today with Paul Castellani who
had a long career in New York State government,
primarily with the Office of Mental Retardation
& Developmental Disabilities. He's also a
professor at the Rockefeller Institute and the
author of a book called "From Snake Pits to Cash
Cows." It's a history of the mental hygiene
system in New York State going back to the
1930s.
Paul, thank you for joining us.
MR. CASTELLANI: It's a pleasure being
here, Steve.
INTERVIEWER: Let me begin first off
by asking a little bit about your recollections
of CSEA. When do you first remember becoming
aware of an organization called CSEA?
MR. CASTELLANI: When I came to work
for State government. I came to Albany
July 1st, 1966 to work for Comptroller Arthur
Levitt to help him prepare for a Constitutional
Convention, so CSEA had an interest in what was
going to come out of that Constitutional
Convention. We were preparing position papers
for the Comptroller as he began to think about
what role the Convention would have.
So CSEA, as really the only
significant union at that time, was on his mind
and as a State employee I became immediately
aware of CSEA. Dr. Wenzel was someone who was
well-known; played an active role. So it was
something as a new State employee I was very
much aware of.
INTERVIEWER: I wonder if you would
just briefly give us a little bit of a thumbnail
of your employment history with the State.
MR. CASTELLANI: Well, as I said, I
came from graduate school for one year to help
Comptroller Levitt prepare for the upcoming
Constitutional Convention. As you may remember,
Nelson Rockefeller had prepared for the
Convention expecting that he and the Republicans
would control the Convention.
But with the Johnson landslide in
1964, which also translated into the Democratic
Majorities in the Assembly and the Senate in
1964 in New York State, the simultaneous
election of Constitutional Convention delegates
made the Convention Democratically controlled
and really did not undertake the large-scale
reorganization of government that Rockefeller
and his chief aide, Ronan, had anticipated.
So although we had prepared these
papers and they served as a good history for the
Comptroller's Office and helped the Comptroller
in a number of other ways, when that role
finished at the end of 1966-67, the prospect of
going back as an instructor of political science
or wherever I might go back into the academic
world compared to staying in what was then a
very largely growing opportunities within State
government and the Rockefeller expansion, I went
off to the then Department of Mental Hygiene.
I worked for a while in the budget
office there. A couple of years I did research
administration, and after that I ended up going
into full-time research, becoming ultimately the
Director of Research for the Office of Mental
Retardation when the Department of Mental
Hygiene split in 1978.
And in the last three or four -- three
years of working for the State, up until 2000 I
was Director of Upstate Operations for OMRDD, in
charge of sort of the day-to-day operations
under Deputy Commissioner for the developmental
centers and community services throughout New
York outside the New York City metropolitan
area.
INTERVIEWER: Now, when we talk about
the history of the mental hygiene system in New
York State, I think we were talking about mental
health area and the mental retardation area --
MR. CASTELLANI: Right.
INTERVIEWER: Obviously it's a big
canvas, but I wonder if you could give us a
little bit of the background. I understand that
the Office of Mental Hygiene or the Department
of Mental Hygiene really came into being with AL
Smith's reorganization --
MR. CASTELLANI: Right.
INTERVIEWER: -- of the Executive
Branch of State government in the late 1920s.
What was the scope and approach of the
Department in those early years?
MR. CASTELLANI: Well, one of the
things that was -- I think stood out in the
1930s after the reorganization was the transfer
of the responsibility for the care of people to
the State, wholly to the State. That began in
the late 1800s what with the building of
institutions such as Wassaic and Letchworth, the
closing of municipal hospitals.
Though I think the last large
municipal hospital in New York City on Randall's
Island was the end of municipal care for --
significant municipal care for people with
mental retardation and developmental
disabilities, and so you had the -- sort of the
setting in place of the State institution system
in the 1930s, which was a growth in State care.
We think of the Depression as a time of economic
distress and it indeed was but the State
institution system was expanding quite rapidly
up until that time.
Then we come into the 1940s with the
war and we go through another significant
change. We lose tremendous amounts of people
from the staffs of these institutions.
INTERVIEWER: Largely because of the
war.
MR. CASTELLANI: Largely because of
the war. The men go off to the war or to
better-paying war industry jobs. The women also
do that. We have the eight-hour day comes into
effect which affects the amount of work that the
employees can do. We have more of the -- more
well-abled residents performing a lot of the
work that had almost -- formerly been done by
employees, closing of colonies where we had some
of these more capable individuals working
outside of the institutions coming back in to
take up some of the jobs of employees.
INTERVIEWER: Not to digress too
much --
MR. CASTELLANI: No, please.
INTERVIEWER: -- but you just used the
term colony. What was a "colony"?
MR. CASTELLANI: Well, it was a very
innovative kind of a program. It was most
notably used by Dr. Bernstein who was the
superintendent, as they called the directors at
that time, the superintendent at Rome.
And he had a program in which he took
individuals, generally men but there were some
women, and moved them out of the institutions to
smaller programs and facilities around the
state. They had farm colonies, they had
forestry colonies, there were some industrial
colonies. Some women were in colonies that were
doing domestic work, so it was a combination of
an off-campus program -- it was relatively small
-- that was mirroring in many ways or presaging
in many ways the deinstitutionalization we
didn't see until the 1970s and the 1980s.
Surely some of these people were
exploited to an extent. They were farm workers,
some of them worked as domestics, but it was a
relatively progressive, innovative program at
the time and it suffered from the war. There
were other factors that closed the colonies but
in the book that I wrote I think I pointed out
at one time at the peak of the colonies, I think
that there were only about 70 percent of all the
people who were on the books were actually in
the institutions. Thirty percent of them were
out working in home care and in colonies and
other kinds of off-campus out-of-institution
situations.
It was relatively a progressive
notion. It surprised me when I went back and
did the research for the book.
INTERVIEWER: Let me just go back to
the thirties even and the rise of the
institutional care. Was part of the issue --
because it seems that most of these institutions
were outside of the New York City metropolitan
area. Was part of that the stigma of mental
illness, that basically there was a desire on
the part of the policy makers to move
individuals with mental illness away from the
general population?
MR. CASTELLANI: I think that was a
large part of it. The other part of it, of
course, was just the simple size of these
institutions. I remember as a young State
employee going to visit some of these small
cities.
In New York City you had on Rand...I'm
sorry, on Wards Island, the Cribbey, Dunlap and
the Myer buildings which were then called
Manhattan Psychiatric Hospital. As you went out
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to the North Shore of Long Island with Central
Islip and Pilgrim and Harlem Valley, these were
small cities housing 12-, 13-, 14,000
individuals, so that it was the sheer size of
the facilities at the time that were just not
able to be accommodated within New York City.
And indeed the only institution for
mental retardation, those people with mental
retardation, was Willowbrook. It was built on
Staten Island which, of course as you know, was
a relatively unpopulated part of New York City
and that was taken over by the Army at the
beginning of World War II.
INTERVIEWER: Now, who was staffing
these hospitals?
MR. CASTELLANI: Well, these hospitals
were family affairs in many ways. I call them
flat pyramids, I guess. You had a relatively
handful of physician/administrators. Doctors,
physicians ran the facilities, so you would
typically have a director and a couple of deputy
directors and a chief of nursing and a chief of
social work and one or two or three -- it was a
relatively small number of high level
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professionals. And then hundreds and hundreds,
indeed some places thousands of people who were
called attendants, locksmiths, food service
workers, groundsmen, safety officers.
Good paying comparatively in some
parts of the state. They were jobs that were
handed down almost. You would often see whole
families working in a facility in places around
the state such as Craig Colony that comes to
mind or Newark or rural institutions. It was
regarded as a good job.
If you had a job -- public employment
was something that was highly prized. You had a
-- not a very good pay but you had a secure pay.
You had a pension. You had some degree of
health insurance, so it was something that was
prized.
INTERVIEWER: I would imagine it was
also very hard work. I know when CSEA looks at
its history one of the things that we take a lot
of pride in in the 1930s was ending the 72-hour
work week for the institutional workers.
MR. CASTELLANI: But it was and it
changed in many ways. I mean in the 1930s the
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institutions were characterized by what I call
comparatively able individuals. The State law
prohibited the institutionalization of children
under five years old. It was very unusual to
have young people, children, in these
institutions.
So if you looked at the landscape of
institutions in the late thirties, in the late
1930s, you would see young adults, men
primarily, comparatively able, so -- and some of
these were individuals who were called defective
delinquents, so it was -- if you look at what we
call now the secure facilities, many of these
individuals were in the institutions in the
1930s on the mental retardation side.
On the mental health side of
institutions, again something that surprised me
because they were our nursing homes before
Medicaid in the 1960s that created the nursing
home industry, if you were old, a little
forgetful and no one wanted or could care for
you, you went to a State psychiatric center, so
that by the 1950s, for example, I've seen
credible estimates that over 65 percent of all
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of the individuals that were in the State mental
hospitals were old. That was their primary
disability. Forgetful, they had what was called
senile dementia.
So you began to see some differences
in the way in which these institutions -- the
history of these institutions and who was in
them, certainly with the mental retardation
facilities during and after the war when you
began to have the severely disabled infants
characterizing the population.
INTERVIEWER: Were the institutions
self-sufficient? Were they basically
communities that were farming and growing their
own food and basically taking care of
themselves?
MR. CASTELLANI: Absolutely, Steve.
These were almost self-contained cities. They
had bakeries and farms, as you said, with
something -- because they were largely rural,
they had morgues and cemeteries. One lived in
the institutions and died in the institutions
and remained there.
Sometimes even though they were a
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major source of employment in very rural areas,
and people knew of their existence, they were
something that people in the community really
weren't integrated with, so places -- they
tended to be more rural. Places like Rome, for
example, comes to mind. Craig Colony, Sunmount,
places of that sort.
INTERVIEWER: Now in your book you
talk about the 1940s being a time when mental
hygiene policy became somewhat politicized in
New York State. I wonder if you would talk a
little bit about that and how it in particular
was driven by Thomas Dewey.
MR. CASTELLANI: Right. Dewey was
running as a reformer. He had been a district
attorney, another crusading district attorney.
He had lost the presidential nomination --
MALE VOICE: Hold it. I'm sorry.
MR. CASTELLANI: No, that's okay.
MALE VOICE: We'll start again.
MR. CASTELLANI: Okay.
MALE VOICE: We're rolling.
MR. CASTELLANI: Dewey became Governor
on a platform of reform. He said that the long-
15
standing Democrat controlled State House with
Herbert Lehman had ossified. I can't remember
the exact term but that was the notion and the
mental hygiene system provided Dewey with one of
his first and biggest opportunities to show
himself as a reformer and that was in both the
mental retardation and the mental health side.
On the mental health side we had an
outbreak of amoebic dysentery at Credemore State
Hospital. This is a malady, a disease, that's
basically as a result of lack of cleanliness,
hygiene and can go through a population rather
quickly and it caused some deaths, and an
investigation into this by a Moreland Act
Commission found that the administration at
Credemore had been remiss in the way in which
they addressed this problem.
And Dewey seized on that and fired the
director, brought in a new administration in the
Department of Mental Hygiene and showed that he
was going to take charge of the situation in
State government by his actions there in the
mental health system.
On the mental retardation side there
16
was a controversy around overcrowding at one of
the premier institutions supposedly at
Letchworth, and the director had let it be known
to the newspapers that a hundred people were
sleeping on mattresses in the hallway. After
some intense discussions with the Governor's
Office they decided that maybe 50 people were
sleeping in the hallway and then after more
discussions with the Governor's Office it was
decided that no one was sleeping on mattresses
in the hallway.
But it became a political issue and it
played into some of the legislative and
gubernatorial campaign in the 1948 election in
New York State, so it moved to the forefront by
a set of opportunities for Dewey to show his
leadership, his aggressive reorganization and
reforming zeal that he wanted to be noted for.
INTERVIEWER: So then we move on to
the 1950s. What were some of the significant
trends of the 1950s?
MR. CASTELLANI: Well, I think that
the significant trends of the 1950s certainly
was the care for people with mental retardation,
17
beginning really in the 1940s, with a series of
factors that come into play.
You have what were called the miracle
drugs that came out of the war experience that
allow the survivability of disabled infants who
might have otherwise died. That turns the
mental retardation facilities from caring for
mental...for relatively able-bodied adults into
institutions caring for severely disabled
children and infants, so you begin to see rather
than farms and bakeries and young adults and
middle-aged adults on these campuses, you see
ranks and ranks of infant infirmary cribs.
You have severe overcrowding because
of the lack of construction that began during
and after World War II. Willowbrook was
supposed to address overcrowding in the mental
retardation system. The Army appropriated
Willowbrook as soon as it opened in 1942 and
didn't give it back to the State in full until
about 1952.
And that with the lack of construction
in other parts of the State contributed to
substantial overcrowding. That became the major
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issue during the 1940s and well into the 1950s.
Every facility that was built was immediately
filled from the long waiting lists, but the
State never caught up. Both on the mental side
with psychiatric hospitals as well as on the
mental retardation side with people with mental
retardation, overcrowding became the primary
issue through the 1950s and it became to a
certain extent a political issue in some parts
of the State.
INTERVIEWER: Now in your book you
talk about the mental retardation system
basically being institutionally based and the
concept was that they were creating schools.
They were schools for the mentally retarded --
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: -- but there was also a
trend with an organization called the
Association for Retarded Children --
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: -- that was very much
interested in providing services in the
community but that was much -- very much at odds
with the State policy.
19
MR. CASTELLANI: The ARC, Association
for Retarded Children, beginning back in
1946-1947, was at odds with the State right from
the start. It was comprised of parents who
wanted to keep their children at home and the
State in the Education Law and in the Mental
Hygiene Law was an adversary, even though the
rhetoric -- the State was proud of its Community
Mental Health Services Act in 1954, which I call
the rhetoric, but the reality was the State was
opposing the parent groups for almost all of
their existence up until at least the 1970s, in
the mid 1970s.
This played out in terms of access of
children with disabilities to local schools,
education formula funding, provision of money to
the services in these schools. The State was
funneling its money through the counties and the
counties were very much oriented towards the
mental health system and the people with mental
retardation, justifiably when you look at the
numbers, were getting a miniscule proportion of
the funds that were supposed to be provided to
them for any kinds of clinical services or
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educational services or services that would
support the families, so they were really
working on their own for most of the 1940s and
1950s.
INTERVIEWER: This is kind of an
interesting sidelight in your book about the
executive director of the ARC actually becoming
the Counsel to a legislative commission that was
writing reports and recommendations on the
system but those recommendations were largely
not followed by State policy.
MR. CASTELLANI: That's right. Gerald
-- Jerry Weingold -- Joseph Jerry Weingold was a
legendary figure in his field. He was -- if not
the first, I think the second president of the
ARC and played an extraordinarily important role
in leading that organization politically.
And he was a very astute political
operative and he linked up with Senator Conklin
who had a developmentally disabled child and at
the time there was a legislative vehicle called
a joint legislative committee and Jerry Weingold
was appointed Counsel to the joint legislative
committee and so the ARC sort of had a
21
governmental home with Conklin's JLC and they
did, as you said, write reports and sort of goad
and needle and prod the State Administration
from that platform and it was an important
legitimacy for them to have a JLC, a joint
legislative commission or committee, report
pointing out the failings of the State
Department of Mental Hygiene.
INTERVIEWER: Now, at that time, too,
on the mental health side we see the advent of
psychotropic drugs --
MR. CASTELLANI: Right.
INTERVIEWER: Deinstitutionalization
moving forward, I think, kind of the high water
mark for the institutions was in the late
fifties and then they began emptying them out as
the sixties began.
MR. CASTELLANI: That's right, Steve.
I think it was just about 100,000 people were
in, I think, about 35 State psychiatric centers
at the time. I don't want to get too much into
inside baseball but there was, I think, around
the notion of deinstitutionalization, there were
a substantial number of people who were -- who
22
would go into an institution.
They would be severely mentally ill,
they would move back out of that institution. A
lot of the deinstitutionalization through the
1960s was twofold. One is this elderly
population was dying, so it wasn't as though
tens of thousands of people were moving out of
those institutions. They were dying in those
institutions and with the advent of Medicaid and
the growth of the nursing home industry
subsidized by Medicaid those older individuals
were no longer going into the institutions.
It wasn't a substantial problem that
began to occur where the psychotropic drugs and
people moving out of the institutions into the
community but not getting a sufficient amount of
aftercare services and creating homeless
problems. So-called single-occupancy hotels in
Manhattan became a controversial problem at that
time as well, but you're absolutely correct. It
was those psychotropic drugs that were
significant in allowing substantial numbers of
people to live in community settings.
INTERVIEWER: But one of the things
23
that you had noted to a little bit earlier, too,
was that in many of these institutions a lot of
the higher-functioning individuals were actually
pressed into service, so I would imagine that in
some ways there was a work force issue that if
you were starting to deinstitutionalize
individuals who were actually providing some
services that you were going to have a lot
higher labor costs as a result of that.
MR. CASTELLANI: Absolutely, Steve,
and one saw that in many of the internal reports
throughout the whole history of institutions,
both in mental health and -- the residents were
providing a lot of services. I remember as a
young staffer going to visit most of these
institutions and being surprised to see them as
caddies and grounds keepers at the institution
golf courses.
Psychiatric centers had golf courses.
They would be working in the homes of the staff.
Many of these individuals who worked at those
institutions at the time were housed in staff
housing on the grounds and residents were
pressed into service as housekeepers and maids
24
and cleaners and a variety of these others, so
that was an internal force working against
deinstitutionalization for sure.
INTERVIEWER: I wonder if you could
talk a little bit -- we're talking about this
from sort of a public policy --
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: -- perspective but, you
know, you kind of alluded to it with the ARCs
being more patient advocates. How did the
patient advocacy movement really evolve and how
did that then begin to affect the public policy?
MR. CASTELLANI: Well, that's -- it's
an interesting New York story in many respects
and I've been in maybe 35 other states looking
at their systems of services.
The ARC began, as you pointed out, as
a group of people who were keeping their
children at home and looking for community
services, but very quickly they began to
organize around the institutions and bring in
the various institution parents groups into
their organization. They were based in a -- on
a county basis so you had then -- and now you
25
have a county-by-county chapter basis.
Organizationally it's actually one
large umbrella organization and all the various
chapters are subsidiaries of that, so
organizationally it's a very powerful
organization and it also in -- not contradiction
to this national policy but at odds to some
extent with the national policy, it also began
to provide services.
The national ARC always wanted it to
be an advocacy organization and said if we got
into providing services we're gonna have -- sort
of have a dual role that's going to somehow
confuse our focus, but the New York ARC said the
State is not providing services and we need to
provide services ourselves, and so they began to
operate largely workshops, and they would fund
them through some federal funding, some
self-funding, some pilot program funding.
They were funded catch as catch can
around the State and so their advocacy, they
became the primary advocate but they're also
providing services as well, so it was an
interesting combination of its role.
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INTERVIEWER: What about the employee
organizations like CSEA. Did you see them
taking any kind of advocacy role on behalf of
the clients?
MR. CASTELLANI: Well, it happened in
some very interesting and subtle ways. Of
course, I think that CSEA has always had a
progressive role in public policy in this and
other arenas, but as the institutions changed,
and they changed with federal funding, we went
from these large custodial institutions where
you had the handful of physician administrators
and ranks of hundreds of attendants and food
service workers.
The federal funding that began to come
into the institutions in the 1960s required the
changing of these to what effectively were
nursing homes, large nursing homes. They were
called intermediate care facilities for the
mentally retarded and this required active
treatment and that changed the nature of the
roles that people were expected to play in those
institutions in order to keep the federal
funding. It changed the nature of employees'
27
relationship with the people in those
institutions.
And certainly as
deinstitutionalization progressed, employees
were working much more closely with individuals
out in community settings and it changed in very
important and subtle ways the nature of the
relationship of the employees with the
individuals that we were serving at the time.
The union, of course, had a number of
positions on a variety of pay and benefit and
work force kinds of things and they came into
play in some interesting ways as we created more
community settings and began to close the
facilities as we kind of went from institution
jobs to community jobs and the transition was
often difficult in some places.
INTERVIEWER: Do you want to jump into
a discussion about Willowbrook and the
Willowbrook consent decrees? I don't know if
you just want to take a break before --
MR. CASTELLANI: Sure.
INTERVIEWER: -- we start there?
You've referenced the Willowbrook
28
School at several points and I think to anybody
who knows even a little bit about the history of
the mental hygiene system in New York State,
Willowbrook is kind of an infamous word.
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: I wonder if you would
talk a little bit about why it became infamous
and how that came about.
MR. CASTELLANI: I've called and
others have called Willowbrook as the sort of
focus and fulcrum of policy in this whole arena.
If I might just take a moment,
Willowbrook, as I think I said a few minutes
ago, was supposedly the solution for
overcrowding. It was the only facility for
people with mental retardation in New York City
and it was built in Staten Island. It was to
house 5000 individuals and immediately upon
opening the State -- I'm sorry, the federal
government took it over for the war effort and
renamed it Holloran General Hospital, Army
Hospital, and never gave it back to the State
until 1952 and contributed significantly to the
overcrowding.
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So Willowbrook right from the
beginning was a political hot potato. It was a
contentious issue through the forties and into
the 1950s and it became the embodiment of
everything that went wrong through the 1950s in
overcrowding and lack of appropriate attention
to the care of individuals in these facilities.
It was built for a population that the
State expected to be there in the 1930s and the
1940s but it -- that was a largely adult,
relatively capable population. It became
characterized by ranks of infant cribs with
severely disabled small children, so all of this
contributed to what became the infamous
Willowbrook situation.
And here a number of things come into
play. You have in the mid-19...or early 1970s
the State fiscal crises become significant. You
have the first layoffs of State employees since
the 1930s. You have a young entrepreneurial
reporter by the name of Giraldo Rivera working
for one of the local New York City TV stations.
You have employees within the institution who
are appalled by the conditions that they're
30
working in.
And sort of confluence of
circumstances and events lead to the exposes at
Willowbrook that got on national television so
Willowbrook becomes a symbol of poor care for
individuals with mental retardation.
INTERVIEWER: Well, this was kind of a
little bit of an aside. Obviously for an
organization like CSEA representing the
employees there's a certain indictment because
of the poor --
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: -- conditions there, but
I think it's also important to note that to a
large extent Giraldo Rivera gained access to the
facility because the employees brought him in.
MR. CASTELLANI: It was, indeed,
literally in the dead of night the employees let
Giraldo and his camera crew in a back door and
escorted him around to show him the appalling
conditions that were existing there because of
largely understaffing, lack of attention to
these kinds of problems. It was not a new
problem. It was something that the State had
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seen time and time again. There had been
reports going well back into the 1940s that
pointed out the appalling conditions there and
at other facilities, so it wasn't something that
the State could say, Oh, we've never heard of
this and this is something that is new to us.
It was just something that got national
attention, certainly statewide and then national
attention.
INTERVIEWER: So when it gets national
attention what results from it are literally
scores of lawsuits about the conditions. How
does that evolve and end up?
MR. CASTELLANI: Well, it comes about
again with these things, as you look into them a
little bit more closely in some sort of peculiar
and often elliptical kinds of ways. There was a
lawsuit that was being brought in the state of
Alabama and the case was called Wyatt v Stickney
and it was brought by an offshoot of the
American Civil Liberties Union called the Mental
Health Law Project.
And we in New York and other northern
and so-called progressive states would look at
32
these terrible conditions in Alabama where this
Federal District Court there said that these
conditions were inappropriate in the extreme for
people with mental disabilities and the state
was mandated to give these individuals their
federal civil rights to treatment and outlined a
variety of very specific things that it required
the state to do.
But very quickly the Mental Health Law
Project looked at other opportunities and
Willowbrook was one and so New York State found
itself sued and a case which was originally, I
think, Joseph L. Parisi, et al v New York State,
it ultimately became ARC, the Association for
Retarded Citizens, or at that time the
Association for Retarded Children v Rockefeller.
The ARC was brought in perhaps a
little, some would say, reluctantly. They were
an adversary with the State in some respects but
they were also getting some State money for
their workshops. They were not sure that they
wanted to be in on it, but they were prodded to
become a lead plaintiff.
And the expectation, as I understood
33
it at the time, because the Commissioner of
Mental Hygiene at the time said publicly that we
expected to put up a defenseless defense. This
was a progressive approach by plaintiffs and
advocates to rectify conditions in this
institution and we in the Department are sort of
gonna put up a defenseless defense.
But if anyone who has ever worked
around or near Nelson A. Rockefeller would
understand that here was one of the most --
certainly the most powerful man in New York and
one of the most powerful men in the United
States being sued by one Joseph L. Parisi, a 35-
year-old severely disabled person saying, You,
the Governor of the state of New York, are
denying me my constitutional rights and making
me live in these appalling conditions.
Rockefeller did not put up a
defenseless defense. In fact, his Attorney
General at the time was Louis Lefkowitz who was
not only the Attorney General but was also
Rockefeller's friend, confidant and political
mentor and the State dug its heels in and
opposed the ARC suit, so we began in 1972 with
34
the plaintiffs, ARC, suing the State and the
State mounting a fairly aggressive defense of
its position for at least the next three years.
INTERVIEWER: Of course, part of the
context here, too, is that Rockefeller had just
come off the Attica uprising --
MR. CASTELLANI: That's right.
INTERVIEWER: -- and certainly it was
on the defensive about a number of areas of
policy.
MR. CASTELLANI: Rockefeller was on
the defensive there. He was being challenged in
Many respects by Mayor Lindsey in New York City
for control of the New York City -- for the New
York State leadership. He always had
presidential ambitions. You had a -- a number
of things that made it -- that led to
Rockefeller really not caving in to the
plaintiffs on this case.
INTERVIEWER: So the lawsuits drag on
for several years and by this time in the mid-
seventies Hugh Carey is the Governor. How does
he confront this issue?
MR. CASTELLANI: Well, one of the lead
35
players in the ARC was a man by the name of
Thomas Coughlin, a former State trooper who had
a disabled daughter. He became the executive
director of the Jefferson County ARC and a
leader of the parent organizations and he
becomes involved with the Carey campaign.
Carey finds him; they seek each other
out. He is advising Carey and Carey raised the
ARC-Rockefeller suit, the Willowbrook case, as a
campaign issue. Not a major one, but certainly
one that was on the radar screen and Carey wins
in 1974, defeating then Governor Malcolm Wilson
because Rockefeller had gone off to be Vice
President. And one of the conditions indeed
was, for that support, was that the State would
sign a Consent Decree. They would settle the
case with the Plaintiffs.
Also involved there was the implicit
agreement that the State would break up the
Department of Mental Hygiene into the
constituent components and create a separate
Office of Mental Retardation. With the Consent
Decree, though, to stay on that point, that was
really a political settlement.
36
The State with Carey, not only was
allied with the plaintiffs, but also just wanted
to settle this case. He wanted it behind him.
He wanted the Willowbrook behind him. It was a
legacy of the Rockefeller Administration and he
said, We're gonna enter into a Consent Decree,
and the plaintiffs, the ARC, at the time also
was willing to come into partnership with the
State as well -- rather than being in an
adversarial position.
INTERVIEWER: So what is the sum and
substance of the Consent Decree?
MR. CASTELLANI: Well, it's a large
and complicated document that outlines a variety
of conditions that the State should meet. Some
of these are very specific. They go back to --
in many ways, the case law comes out of law that
applies rights to prisoners. It's individuals
will have their clothing, fresh clothing, every
day. They will have so many hot meals every
day. They will have so many hours of
recreation. Very, very specific kinds of
standards and guidelines that the State has got
to meet within institutions.
37
And the Consent Decree also says that
the State will provide alternatives to
institutionalization, so the courts act now as
one important prod or goad for not only
improving the institutions but also providing
community alternatives to institutionalization.
INTERVIEWER: But these are specific
agreements relative to the individuals with
mental retardation.
MR. CASTELLANI: For all of the
individuals that were in the Willowbrook class
and the class was defined as the number of
individuals or those individuals who were at
Willowbrook when the Court took the case and
held them to be the class, so one of the
problems with the State's case was that they had
this -- they had this Willowbrook class of 5000-
some-odd individuals who were now in effect
wards of the Court and another 20,000 or so
individuals were also under the care of the
Department of Mental Hygiene.
What Coughlin did as Commissioner, the
first -- actually in 1975 he was appointed
Deputy Commissioner for Mental Retardation under
38
the then still umbrella Department of Mental
Hygiene, but he fairly soon into his
administration began to apply the guidelines and
standards of the Willowbrook Consent Decree to
virtually everybody under the care of the
Department at that time.
So, again, I think a very progressive
approach that he took, and it was also a smart
Management approach because it became
increasingly difficult to sort of manage a large
system of services having 5000 people that have
these sorts of guidelines and standards that
have to be met and another 15- or 20,000 people
under different standards and guidelines.
INTERVIEWER: Now the Carey
Administration then takes the concept of the
Willowbrook Decree and takes it a step further
with something that's called the Morgado
Memorandum. I wonder if you'd talk about how
that came into play, what role CSEA, to your
knowledge, played in the Morgado Memorandum and
what it meant.
MR. CASTELLANI: Well, Steve, I'm
smiling because very time I try to explain this
39
I think of myself as juggling four balls in the
air, so let's see if I can do this and not trip
over my shoelaces. In order to understand the
Morgado Memorandum you have to sort of keep four
balls in the air, if you will. Let's see if I
can do this right.
One, you had Willowbrook. About 150
individuals from Willowbrook, because of the
court orders and other federal funding
requirements, move out of Willowbrook into this
dilapidated New York City abandoned hospital
called Gouvernor and the parents there become
very active and aggressive vis-a-vis the State
because of the poor conditions in Gouvernor.
Indeed, the New York City Fire Department wants
to close it down, so we have active parents at
Gouvernor looking for alternatives to the poor
care there.
You have the Mental Retardation
Institute in Valhalla as a part of the New York
Medical College at Westchester fundamentally
bankrupt, owing money to the State through the
Urban Development Corporation, so that's ball
number two, if you will.
40
The third ball is that the Archdiocese
of New York has historically wanted to have a
medical school and also has a hospital with
space called the Flower Fifth Avenue Hospital.
And the fourth ball, if you will, is
the controversy that is arising with the unions
and Carey around the whole layoffs and freezes
that arise out of the severe fiscal crises the
State is undergoing throughout the whole 1970s.
State employees are, on the one hand,
seeing deinstitutionalization occur, going out
into what are then private organizations. Now
the Associations for Retarded Citizens have gone
into partnership with the State as a part of the
Willowbrook and ICF, the intermediate care
facility, the federally-funded mandates, and are
providing services.
But many of these are very embryonic
organizations and State employees are actually
moving out of the institutions and going to work
in private organizations. That's under what we
call shared staffing, but there were scores,
sometimes hundreds of State employees out
working in these ARCs under these so-called
41
shared staffing arrangements.
So they're out there providing
services in the community in private
organizations and looking at the Governor and
they're saying, We supported you and we're
increasingly looking at cutbacks and freezes and
we're bearing the brunt of the fiscal crisis,
and the public is more and more concerned about
SROs and homelessness. And CSEA says that we're
less than enthusiastic about supporting you,
Governor Carey, in the 1978 re-election.
So, if I've kept three or four of
those balls in the air, what happens is that the
State of New York, the masterful political
operative Robert Morgado says that --
INTERVIEWER: Who is Carey's Chief --
MR. CASTELLANI: Carey's Chief of
Staff.
INTERVIEWER: -- of Staff.
MR. CASTELLANI: ~-- says that -- well,
let's see if I can get this straight. The
Archdiocese of New York buys and takes over the
New York Medical College and Mental Retardation
Institute so it now has its medical college that
42
it wants and it agrees with the parents at
Gouvernor to move those individuals from
Gouvernor into the Archdiocese Flower Fifth
Avenue Hospital, but in order to pay for the
cost of assuming the debts at Valhalla at the
Mental Retardation New York Medical College, the
State agrees with the federal government to
provide a reimbursement rate at well over $250 a
day, which was far in excess of what anyone was
getting for reimbursement.
The public employees look at this and
say, We're suffering the brunt of fiscal
cutbacks and you've just provided this very
lucrative agreement to the Archdiocese of New
York to give them a medical school and provide
these services in Flower Fifth Avenue Hospital
and we're going to oppose you in re-election.
We're going to raise this issue and just scream
bloody murder.
And what the Morgado Memorandum does
in the arcane language of bureaucracies in
effect says to the State employees that we will
formalize the use of State employees in
community facilities, and this was a landmark
43
decision or action, if you will, because as I've
studied these programs in many, many other
states, you had the long-standing conflict and
clash between public employees and the State as
institutions closed and were, in effect,
privatized what services were then provided by
private organizations.
But the Morgado Memorandum said, in
effect, and it uses the term "parity," is that
the State is going to provide services in the
community through the vehicle of private
organizations, primarily the parent-operated
ARCs and UCPs and through State-operated
programs, State-operated community residences
and State-operated day treatment programs using
public employees.
Now it was an easy agreement to make
in some respects because the private agencies
were not really able to keep up with the pace of
deinstitutionalization that was anticipated by
the Court and by the federal government, so that
the State really needed the public employees to
meet those targets because they were not only
out there providing services in the private
44
agencies but in order to meet the increasing
numbers of people coming out we really needed
the State-operated facilities.
So in a very short period of time in
the mid-1970s, the State of New York entered
into, in effect, three historic agreements: One
with the federal government that they would use
federal funding to provide the basis of services
in the community --
INTERVIEWER: For the mentally
retarded.
MR. CASTELLANI: -- for the mentally
retarded. Not only would the federal government
be subsidizing through federal reimbursement the
institutions, they would also pay for 50 percent
of the cost of community services, and that was
a very important thing that the State negotiated
with the federal government.
The second thing was that they would
nego...they would provide services with the
formerly adversarial private organizations, the
ARCs and UCPs. They would now become partners
in services and we would also have a partnership
with State employees in providing community
45
services.
So from that point on, which I have
always regarded as sort of a set of historic
decisions, you really settled a labor peace in
some large way. You no longer have -- I mean
there's always a -- the push and pull among
important players like this but you really --
you moved forward from the mid- to late 1970s
with the State and the federal government, the
State and the private agencies, the State and
the public employees, all moving in the same
direction and providing community services.
And the Morgado Memorandum was the
formal sort of agreement that embodied that in
1978.
INTERVIEWER: Now as long as I've been
involved with CSEA, which is now over 20 years,
there was another piece of the Morgado
Memorandum that we've always looked to as being
significant and I think it has become -- it
became a bone of contention, certainly, in the
1980s and that was that the Carey Administration
also was extending their approach of a
cooperative public-private partnership in a
46
balanced system to the mental health system as
well as just the individuals covered under the
Willowbrook Consent Decree.
MR. CASTELLANI: M-m h-m-m. Well, in
the late 1970s, as you mentioned earlier, you
begin to see a significant divergence. Mental
Health System goes down one path and the Mental
Retardation System goes down another.
And I think the key to that is that in
the Mental Retardation side, developmental
disabilities, you had this existing framework of
providers, the ARCs. You had 50-some-odd
chapters and then the United Cerebral Palsy, the
UCPs had a number of chapters, and then you
brought in a number of large independent
agencies, the Young Adult Institute comes to
mind, so you had this organizational framework
which the State could rely on to provide
services in partnership with the public
employees.
On the Mental Health side you didn't
have that, that framework. You had services
being provided in private, nonprofit and some
municipal hospitals but you had no significant
47
network of private providers that were going to
be delivering services. Also the
characteristics of the populations they were
serving were less stable, if you will. Those
were people who might need services for some
period of time and then they wouldn't need
services for another period of time.
People with developmental disabilities
typically, certainly those most severely
affected, need services all the time for the
rest of their lives and so organizations can
easily -- more easily predict what they need to
provide.
The mental health side has always
struggled with the lack of this sort of provider
organizations in the community and how they're
gonna provide a guarantee for services for
public employees in this kind of context.
INTERVIEWER: Seems like there are
also, though, two other factors that come into
play with that; one being that with the
Willowbrook Consent Decrees you had very clearly
established legal precedent whereas on the
mental health side you didn't have quite the
48
same consistent legal precedent. And the other
factor that you mentioned was that the State had
entered into an agreement with the federal
government to provide funding for the Mental
Retardation System that was not available for
the Mental Health System.
MR. CASTELLANI: Absolutely, Steve. I
think you hit on a crucial point. The Courts
act as a goad, as a prod, as a general
framework, where Courts have very little ability
to actually implement their decisions, and so
one can always look at the strictures and
guidelines and standards that the Court laid
down and the Willowbrook is a basis, one basis.
But the State by the 1970s was now
getting hundreds of millions of dollars in
federal reimbursement through the ICF program
and so that program, the Intermediate Care
Facilities program, which was funding both the
institutions and the community services, that
New York was maximizing Medicaid, as the term
goes, Medicaiding things as the verb went.
The federal government was very
concerned that New York was spending a lot of
49
its federal money and those ICF requirements
were very stringent as well, so the federal
government was very aggressive in making sure
that the State was following the standards or it
would disallow tens of millions of dollars in
federal reimbursement if they weren't meeting
those standards.
So the Mental Retardation side of the
whole picture, if you will, was faced with both
the Court orders and the ICF program really
constraining, driving, forcing and focusing the
way in which services were delivered. Very
little of that occurred on the Mental Health
side and so you'd get the kinds of problems you
allude to.
INTERVIEWER: And in the late 1970s,
if I'm not mistaken, there was a division
between the creation of the Office of Mental
Retardation and the Office of Mental Health, so
basically it was no longer one Office of Mental
Hygiene. There were two separate agencies now
administering programs.
MR. CASTELLANI: Absolutely, Steve.
That was a longstanding demand on the part of
50
the ARC, had gone back for at least ten or more
years, and when Coughlin came in as the Deputy
Director of the Department of Mental Hygiene
under Carey, that portion of the Department of
Mental Hygiene began to operate as a semi-
autonomous and then autonomous organization and
then the formal break with the Department
occurred in 1978, but even before then it was
operating almost as a separate department.
Certainly after 1978 you have the
Department of Mental Hygiene now and the Office
of Mental Retardation, the Office of Mental
Health and the Office of Alcoholism and
Substance Abuse, really going off in three
distinct directions.
INTERVIEWER: So let's talk about the
real trend of deinstitutionalization in the
mental retardation field in the 1980s. What do
you remember about that time? How did it
actually move forward in terms of closing the
institutions and moving into community settings
and having a balanced system between the public
and private sector?
MR. CASTELLANI: That was a very
51
interesting and exciting time in many ways. You
had a substantial amount of federal money now
coming into the system so the State was able to
do it with a great deal of fiscal stability,
much more so than in the 1970s.
You had an organizational choice that
Coughlin made. He established a great deal of
authority out at the local level. He created
some strong regional offices. They were called
developmental disability services organizations.
At one time there were 20 of them. He gave the
directors out there a great deal of -- a great
deal of authority to make decisions about not
only the institution but the community services;
not only the State but as well as the private
agencies that were providing services.
You had a change in the way in which
services were being delivered because of the
Court cases and because of the demand of the
federal reimbursement system. The nature of
services were changing. People were much more
involved in less than institutional settings.
You had a lot more opportunities for employees.
They were no longer just relegated to being a
52
develop...an attendant, but even nonprofessional
employees had a variety of different
opportunities that were available to them, had
many more women coming into the work force as
you had the baby boom generation coming out of
college and working.
So you were developing a lot of
community programs and, well, there were a lot
of stories about "not in my back yard," and many
of these were in Long Island and New York
metropolitan area. In the Upstate communities
many of these institution -- deinstitutionalized
programs, community programs I think to put it a
little bit more elegantly, were welcomed.
At the same time that this was going
on you had the decline of the smokestack
industries in Upstate New York and so as you
moved in a day treatment center and a couple of
community group homes into a community you
created a not insignificant economic impact in
very many small towns and rural communities
across Upstate New York.
These were difficult to do in New York
City, which has always been a very difficult
53
place in which to develop services for people,
especially those that are in wheelchairs and
have severe disabilities, so many -- much of the
development did occur.
It occurred rapidly. It was
relatively successful. People gained a lot of
experience, but as we got into the 1980s we were
still dealing with 20 large institutions. The
Governor said he was gonna close Willowbrook and
then the State of New York, Department -- Office
of Mental Retardation said it would close six
more developmental centers, which was a fairly
broad-based aggressive policy compared to what
was going on in other states.
And it raised a number of interesting
or forced issues. Some of them are -- I don't
know whether they're amusing or not. I'll tell
you at least one perhaps and you can see whether
you've heard it before.
The Governor, when we were gonna close
Willowbrook, was very close -- Governor Cuomo
was very close to the unions and he instituted a
policy on closure that was called a no-layoff
policy. That's what it was called. It would be
54
very hard to find any document that said "no
layoff," but you may be much more knowledgeable
and should be more knowledgeable about what the
actual document said, but it was gonna guarantee
or assure employees that they would find
alternate opportunities.
And when we were closing Willowbrook,
first the Governor was paying a lot of attention
and he wanted to make sure we solved the work
force issue as well as alternative use issues
and health care and Ford Motor Company had
closed a plant at Mahwah, New Jersey and there
was an individual there, and I can't remember
her name right now and it may occur to me later,
she was hired by Ford to help their employees
get other jobs and she was very successful and
we learned of that and hired her at Willowbrook.
She got employees GEDs who didn't have
them, drivers' licenses, organized bus trips to
take them around to different facilities; not
only ours, but mental health and other public
facilities to see whether they wanted jobs --
job fairs at these different facilities, just a
crackerjack, and solved for us, the agency, the
55
problem that the Governor was very interested
in.
Make sure the employee unions were
happy, that they were being adequately taken
care of and getting alternate jobs. She was so
successful we moved her to the next closure site
which was Westchester which was in the middle of
a booming service economy at the time, a lot of
other State facilities, and she got all of our
key staff jobs in other facilities.
She was like the sorcerer's
apprentice. We had to say stop, stop, we're
going out of certification. We're losing our
key employees here and you're getting them jobs
in other places, so we learned what worked well
in one place had to be tempered somewhat in
another place as we began to deal with work
force issues.
INTERVIEWER: Do you remember
resistance from CSEA on the closings?
MR. CASTELLANI: There was a -- there
was resistance. There was a couple of instances
and some of it was rhetoric and some of it was
reality. Rome comes to mind as one instance.
56
We had a facility there that at one time housed
5000 people, was down to about 200, and it was
slated to be closed. And the staff out there,
the executive staff, had worked out what was
called a reconfiguration plan and the union got
on board and things were going along fairly well
and then the Governor announced closure, and
even though we were going to assure people jobs
in the community, the word "closure," everyone
just backed off all the agreements and we had to
spend a lot of time out there talking about the
opportunities that were gonna occur for people.
Indeed, they did get -- at least
everyone got a job and most people got a better
job, but --
INTERVIEWER: The idea being the
closures didn't mean that they were going to be
without a job.
MR. CASTELLANI: Right.
INTERVIEWER: It meant that you were
going to close the institutional facility, move
into the community --
MR. CASTELLANI: Right.
INTERVIEWER: -- and people would have
57
opportunities to, in some cases, even get
promotions with the -- by the work that they
were doing.
MR. CASTELLANI: Right, and so it was
hard to, you know, remind people -- it wasn't
without dislocation. People had gone to work at
this place for 10, 15, 20 years and to say,
well, you're gonna have a job but it's gonna be
20 miles away, was not always something that
everyone welcomed.
We were also building a lot of prisons
at the time and we built one on the campus of
Rome so the State was also able to assure a lot
of public employees that there would be
opportunities within the prison but there were
also dislocations.
You had what we would call institution
titles. People would be food service workers or
groundsmen or jobs that would be CSEA title
positions, for example, more typical in the
CSEA, and those people would have a great deal
of seniority.
And so translating that seniority into
a community facility often became difficult
58
because they would say, well, I've got 20 years
of seniority and I want to work five days a
week, Monday through Friday, from nine to five,
and sort of bump someone who may have had less
seniority working in the community so it was
very --
INTERVIEWER: That being that -- the
difference being that in an institution you
might have had several hundred workers whereas
in a group home you might have only 15 to 20.
MR. CASTELLANI: That's exactly right.
So a lot of that created situations that had to
be managed. Sometimes they were more difficult
to manage, but overall it was a relatively
successful closure of six facilities ina
relatively small period of time with very
limited labor stress I think.
INTERVIEWER: It's an interesting
perspective. Probably you saw it, I would
imagine, as a State manager, that you would deal
with CSEA on a statewide basis. You might come
to an agreement about the policy, but then at
that grassroots work site level you actually had
to implement it. Did that ever become an issue?
59
MR. CASTELLANI: It became an issue
almost every place we worked. What worked well
in one place didn't work as well in other
places. It changed over time. Certainly the
pay of a -- even a moderately well-paying job in
some of the rural Upstate counties goes a lot
longer than -- a lot farther than the pay in New
York City, New York City metropolitan area, so
you had more difficulty around those kinds of
issues.
People were more satisfied with
changes there than they would be in some other
parts of the state. Problems might arise over
health care or maintenance or different kinds of
issues would be managed in different kinds of
places.
And as I said, as we moved forward in
closure, the State's fiscal surpluses turned
more towards deficits and we were less able to
pay bonuses and create a lot more well-paying
positions than we might have liked. It had to
be managed separately as we went along in each
of the different facilities.
INTERVIEWER: Now, you write in your
60
book that when George Pataki becomes the
Governor of New York State there's a change in
policy in terms of the approach to closure. I
wonder if you would talk a little bit about how
that evolved and what the result was.
MR. CASTELLANI: Well, the Governor
had decided to close Willowbrook and then in
1987 six other facilities, and this all went
well.
INTERVIEWER: This was under Cuomo.
MR. CASTELLANI: Governor Cuomo, yes.
And as the momentum moved forward with the
closure of six facilities, people began to say
we should close all institutions and that became
a policy that emerged out of the field in many
respects, and in 1991 you had an extraordinary
consensus among all the unions, CSEA, PEF,
Council 50, all the family support
organizations, the providers, and certainly the
State on a policy to close all institutions by
2000.
It seemed as though everything was
moving in that direction but a number of other
factors began to emerge. Closure began to slow.
61
The economy began to go into recession. The
State had less fiscal resources. There was a
greater concern about the public safety. You
began to have individuals, whether they were in
our system or other systems, that were engaged
in criminal acts. People began to say maybe we
don't want to move everybody right out in your
neighborhood.
We ran into difficulties around
alternate use. Beginning in the Rockefeller
Administration we bonded facilities for 40 years
and then we rebonded them and rebonded them and
we really didn't think about it a lot except
when we wanted to sell off these facilities to
private organizations, after we turned the ones
we could into prisons, we began to see that
bonding constraints required because they were
nontaxable bonds -- began to create problems in
getting rid of these facilities.
A whole number of things were
beginning to slow the enthusiasm for closing all
institutions. Some of the traditional providers
were saying maybe closure wasn't going to solve
all their problems and continued growth of their
62
facilities.
The unions were concerned about high-
risk individuals who were in the criminal
justice system that they were caring for as we
began to pay more attention to secure facilities
and regional behavior treatment units.
So when the -- Governor Pataki was
elected unexpectedly in 1992, he initially said
that we were going to review the closure policy.
Some people heard moratorium, some people heard
review; again, one of these things you can go
back and actually find it in documents or press
releases, but in effect put a hold on closure.
There was a growth in the secure
facilities emerging. There was also an address
to the issue of the waiting list that came out
of another court case called the Olmstead case,
that there were thousands of people on a waiting
list that had not been adequately given
services.
And so when the Governor announced
that the closure, in effect, wasn't going to go
forward by 2000 there was an unsurprising lack
of complaint among virtually all of the players,
63
so that through the 1990s, after a couple of
initial skirmishes around will we close or won't
we close here at 0. D. Heck, for example, which
is still open here in Schenectady, New York, the
State really downsized to a population which is
largely made up of three groups of individuals:
the frail elderly, those who present some risk
of inappropriate behavior in the community, and
those who are involved in the criminal justice
system.
So that the State, in effect, runs
nursing homes, mini prisons if you will, and
sort of secure facilities for individuals who
might be at risk, and those seem to have a great
deal of political support across the spectrum
and --
INTERVIEWER: In more of an
institutional setting.
MR. CASTELLANI: In an institutional
setting. Now we're -- I think the State is now
probably running about five of these facilities
for about less than 2000 individuals, so if one
puts it in the historical context of running 20
institutions for 27,000 people and no
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alternatives, some would say these are
relatively well-run institutions that probably
-- most assuredly do not have the
characteristics of the appalling conditions of
Willowbrook in the 1960s and 1970s and so there
really is relatively little controversy about
the State operating these facilities as they are
today.
INTERVIEWER: You talk in the book
about a concept that, I guess, the Pataki
Administration used of -- or a phrase that says
we're ending institutions as we know them.
MR. CASTELLANI: That's right. I
think that was the way in which they
characterized the kind of facilities that are --
that I described. I mean if one goes back and
says we started to close institutions because of
the appalling conditions at these huge places
like Willowbrook and Letchworth and Rome and
other places where thousands of individuals were
living in conditions that were despicable, we
now have what I think advocates and families and
policy makers and all the players think are
well-run facilities for individuals who seem to
65
be appropriately placed.
Not all agree, but I -- one does not
see a broad advocacy community demanding the
closure of these facilities. You find the
unions, as you well know, are supportive of what
are better paying positions although they're
dangerous jobs working -- because you are
dealing with individuals who have behaviors that
can be -- can be dangerous to the workers, but I
think there's a consensus that this is a policy
that's well supported.
INTERVIEWER: The -- I think by and
large many people would agree that New York's
system of care for the mentally retarded is a
model for the nation. Would you say this is the
Golden Age of mental retardation services in New
York?
MR. CASTELLANI: I'm not sure I'd
characterize it in those terms, Steve. As I
said, over the years in various projects that
I've done, I've been in many, many other states
(I think maybe 30 or so) and talked to
colleagues around and visited scores and scores
of facilities.
66
There's a surprising variation. I
think that New York provides a high quality and
a high level of services throughout the State,
so that if you have a child with a disability or
a family member with a disability, a
developmental disability, you can be reasonably
assured of getting good State-provided or State-
funded services either in an ARC, a private
agency or a State-operated program. Whether you
live in Cheektowaga or Montauk, you're gonna get
good services.
You go to many other states, Wisconsin
comes to mind, for example again, or a
relatively well-to-do progressive state, you get
wide variations. If you live in Madison you get
good services. A hundred miles away you don't
get good services. Other states that are
comparable to New York use large nursing home
chains. They've had problems with those, sort
of multi-state for-profit providers. There's
been a problem in other states, so that I could
go across the country and say, well, this
particular program is a model and that
particular state has done some things that are
67
progressive.
But I could say -- and I don't have an
immediate family member with a developmental
disability, but if I had a family member, a
child, a grandchild, a brother or sister with a
developmental disability, I think I'd rather
have that child in New York State than any other
state in the nation. I would not say I wish I
lived in Madison, Wisconsin or I wish I lived in
Pennsylvania or even California. I think you
get a very, very high quality of substantial
services.
Advocates might say these tend to be
More institutionalized. Even in the community
they tend to be more routine. We have a long
way to go in making services available on a more
individualized basis for those individuals who
might benefit from those, and I think there's a
case to be made for that. But you get a lot of
services and you get good services. They may
not necessarily be exactly the kind of services
you want, but you probably won't go without
services in New York.
INTERVIEWER: As we wrap up, let me
68
ask you what are some of the memorable CSEA
characters that you've encountered in your
career?
MR. CASTELLANI: I remember Dan
Donohue and the closure era. He played a very
active and very vocal role in the formation of
the policy around the late 1980s. It was -- as
I suggested with the issues around Willowbrook,
he had the Governor's ear. He had to pay a lot
of attention to what we were doing around work
force issues; not just the CSEA but the whole
State work force.
So as I think back on that era, which
was certainly one of the most interesting and
exciting eras in which I was involved and he was
someone I -- he certainly stands out as someone
who you remember.
Many of the local leaders.
Unfortunately I can't remember all of their
names, but the closure and
deinstitutionalization involved so many
committees, so many meetings. The State was
very, very aggressive in making sure that no one
was surprised by what we were doing. They
69
formed committees upon committees upon
committees to make sure that the unions were
involved and local union representatives knew
what was going on.
There were many of those meetings,
what they say in the diplomatic corps, frank and
candid discussions. A chair or two might have
been tipped over from time to time. A coffee
cup might have gotten spilled. But the
directions from Albany were certainly don't walk
out of the room unless, you know, unless you --
please understand what all the problems are.
You might not necessarily solve them
all because I think, beginning with Coughlin, I
won't characterize this as the Golden Era, but I
think that there was an attention to the notion
of the work force as being absolutely essential
to what it is -- to what OMRDD was going to be
doing.
So Theodore Wenzel I remember as a
young man, me as a young man. He was an
important player. People were sorting out what
did this Taylor Law mean and what was CSEA's
role going to be and Ted Wenzel was someone who
70
was a very, very important player in the 19...
certainly as I remember in the 1960s into the
1970s.
So those were two individuals that I
remember particularly and then, as I say, scores
and scores of folks who I sat around the table
with in many, many meetings around the state,
hashing out issues that were -- ranged from the
ridiculous to the sublime but ones that had to
be sorted out as people -- you're dealing with
people's jobs, people's lives, people caring for
very vulnerable and important people in their
lives, and so these were things that people
cared about deeply and one can see it in all
those cases.
INTERVIEWER: I've asked this question
of everybody we've interviewed. Why do you
think CSEA has been around for close to a
hundred years?
MR. CASTELLANI: My goodness. Seems
like I've been around for close to a hundred
years sometimes. I think -- I think that when
you look at public service in New York -- as I
say, I came to work for the State of New York in
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1966 for one year and I stayed in public service
for thirty-five years and I travel a bit around
the world, my wife and I, and I'm often asked,
you know, when I enter a country what's your
profession? And I always say, “I'ma civil
servant, a public servant."
And that's something that I take and
always have taken very much to heart and it's
something that I've always thought about with
the people that I work with for thirty-five
years. It wasn't something that was unique to
me, and I felt that when I came to work for the
State for one year and stayed for thirty-five
years, is because public employment has been an
important part of my life.
I think that New York has had a long
and rich history of public service and public
services and over the years there have been
times that I and my colleagues have stood on the
Capitol steps with -- shaking our fists at the
Governor's Office but I think over the years
it's been a satisfying career.
And I think why CSEA has been around
for a hundred years is because, you know, it
72
embodies that. I think people who are public
servants, not just State workers, I think that
you see that. You certainly see it in the field
that I worked in serving the State's most
vulnerable population.
These people didn't just come to punch
a clock. They came to provide a public service
and a proud tradition; one that I'll still say
when I go to some country. I'm a New York State
public servant and I think that's the important
part of what CSEA is all about.
INTERVIEWER: Let me ask you just one
More question because you kind of raised
something that jogs it for me. The terminology,
you talk about the State's most vulnerable
citizens. The terminology has changed over the
years and I think obviously there's an attempt
to be more sensitive --
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: -- in the terms that we
use and even to the extent that the term “mental
retardation" is not used as much any more and we
kind of went through --
MR. CASTELLANI: M-m-m.
73
INTERVIEWER: -- a variety of terms
and talking about those for a while it was
people with mental retardation --
MR. CASTELLANI: M-m h-m-m.
INTERVIEWER: -- kind of developmental
disabilities came in. Then we heard them talked
about as consumers and I think today they refer
to them as individuals.
MR. CASTELLANI: I think that
sometimes it can trip you -- trip your tongue
and try to figure out exactly who are we talking
about, but I think as you look back, back in the
old annual reports when you looked at the idiots
and morons and imbeciles, I know we kind of
recoil at those terms now, but they were
routinely used in the State.
So I think it's an understanding of
the notion that each of us is a person, is an
individual, and we have certain characteristics.
Some of us with mental retardation, some of us
with different kinds of developmental
disabilities, so even though the language can
change, the language sometimes can be awkward, I
think it moves in the right direction.
74
I think now we'd be talking about
people with developmental disabilities,
consumers, individuals. I think that's the
terms we'd use now rather than the mentally
retarded or the developmental disabled, a class
of individuals that -- so I think it's a good
thing overall.
INTERVIEWER: Well, Paul, this has
been a great pleasure and very, very informative
and we thank you for taking the time.
MR. CASTELLANI: Steve, it's an
opportunity for me and thank you for letting me
think about old things that I haven't thought
about for years and share some of these
experiences with you and your colleagues in
CSEA. Thank you for inviting me.
INTERVIEWER: Thank you.
(Conclusion of interview of Paul
Castellani.)
