THE
UNFINISHED PROMISE OF WILLOWBROOK:
TWENTY-FIVE YEARS OF UNNECESSARY DESPAIR
FOR NEW YORKERS LIVING WITH MENTAL ILLNESSES
A
policy paper by the Mental Health Association in New York State
(MHANYS)
“Governor
Carey is determined to improve the quality of life for our mentally
ill and mentally retarded populations. This entails improving
both services rendered to inpatients of state psychiatric centers
and to the mentally ill who are most appropriately served in community-based
settings. The ultimate goal of state policy is the creation of
a balanced system of treatment that maximizes both public and
non-public resources,”
Robert J. Morgado, Secretary to Governor Hugh L. Carey, June
15, 1978
Prepared by the Mental Health Association in New York State, Inc.
October 18, 2002
The early 1970s was a period of huge turmoil in the provision
of services for people living with mental retardation and developmental
disabilities. Today, what is simply known as Willowbrook
was in fact the catalyst for revamping the entire service system
for people with mental retardation and developmental disabilities.
From a state school for the mentally retarded mostly known for
its horrific conditions, Willowbrook as a form of care
was wrestled into a system cooperatively providing quality care
across the entire state of New York. Willowbrook will always
be remembered for changing the way our state treats and serves
people living with mental retardation and developmental disabilities.
Mental
illness in this state, contrary to the long-forgotten “Morgado
Memorandum” cited above, has not been the beneficiary of
such concern, attention and reform. The Morgado Memorandum clearly
stated the intent of the Carey Administration: Meeting the Willowbrook
decision’s court-ordered reforms to fully care for and meet
the needs of all three populations -- people with mental retardation,
developmental disabilities and mental illnesses.
This
report illustrates that due to a lack of governmental commitment
to proper structure and funding, New York State has failed to
meet its “responsibility for the prevention and detection
of mental illness and . . . to comprehensively plan care, treatment
and rehabilitation of mentally ill citizens,” (Mental Hygiene
Law Section 7.01).
How
it is
In
the mid-1960s, the movement known as deinstitutionalization began
in earnest. Pressure was building to move people out of state
run institutions for mental illness, mental retardation and developmental
disabilities.
In
1965, U.S. Senator Robert Kennedy visited the now-infamous Willowbrook
School on Staten Island, unannounced. Afterward, he declared the
“wards were less comfortable and cheerful than the cage
in which we put animals in the zoo.” In 1971, Geraldo Rivera
brought the horrors of institutional existence into our living
rooms with his Willowbrook expose, forever changing the
role of the state run institutional system. Rivera’s expose
and book on Willowbrook titled, “A Report on How
It Is and Why It Doesn't Have to Be That Way,” was the
catalyst that brought about the class action lawsuit primarily
responsible for changing this archaic system, New York State
Association for Retarded Children, et. al. and Parisi, et. al.
v. Rockefeller.
The
Willowbrook case led New York State to adopt sweeping change.
Moreover, it became popular opinion that these deplorable conditions
were unacceptable for people in state-run institutions, regardless
of mental disability diagnosis. In furtherance of the goal to
better meet the needs of these distinct and vulnerable populations,
in 1978, the state Department of Mental Hygiene was separated
into three, diagnosis-based offices – The Office of Alcoholism
and Substance Abuse, the Office of Mental Retardation and Developmental
Disabilities, and the Office of Mental Health.
Twenty-five
years later, our state continues to lack that “balanced
system of treatment that maximizes both public and non-public
resources,” referred to by Secretary Morgado. What was accomplished
for people with developmental disabilities and mental retardation
has not been attained for people living with mental illnesses.
When
looking at what has become of deinstitutionalization, in theory,
it was an exceptionally well-intentioned effort. However, in practice,
at least on the mental health side, it has been historically underfunded,
and utterly lacking a plan. Because of political impotence here
in New York, the census of our psychiatric hospitals dropped by
nearly 80,000 before the first dollars finally began to follow
people from institutions into the community in 1994. By the time
the Community Mental Health Reinvestment Act became fully funded
in 1996, there were only about 8,000 people occupying the more
than two dozen state-operated psychiatric centers. The savings
from most of those 3,500 bed closures have gone into community-based
services, totaling well over $100 million. But over the period
of a quarter-century prior to the law’s adoption, billions
of dollars were lost from the mental health system to general
fund purposes.
Because
of the failure to create a system to meet the demands of deinstitutionalization,
we instead have experienced ‘transinstitutionalization.’
An entire population of people have moved, by way of police cars
and courtrooms, from psychiatric hospitals to prisons and jails.
In 1978, approximately 35,000 New Yorkers were living in state,
city or county correctional facilities. Nearly 97,000 New Yorkers
reside in these same correctional facilities today. When today’s
inmate population is considered with the US Department of Justice
estimate that approximately 16% of inmates throughout the US have
a diagnosable mental illness, we realize that approximately 15,000
individuals with mental illnesses are in correctional facilities
in New York, alone.
However,
not only have prisons and jails been housing individuals with
mental illnesses, this population has also been ‘transinstitutionalized’
to adult homes and nursing homes. Recent news reports have featured
the unacceptable conditions in which many adult home residents,
including as many as 15,000 individuals with mental illness, reside.
In addition, news reports have also reported and the Federal government
is now investigating allegations that as many as 1,000 nursing
home residents with mental illnesses are being housed in locked
wards without the services and protections afforded to patients
in psychiatric centers. While these housing options are technically
community-based residential facilities, many advocates argue that
housing individuals with mental illness under these conditions
is more like inpatient psychiatric treatment of the era deinstitutionalization
began, rather than residential housing.
So,
today, in 2002, 30 years after the Willowbrook expose, and nearly
25 years after the Carey administration declared its intent to
fix the mental health system this is, to borrow a phrase from
Geraldo, “how it is”.
…And why it doesn’t have to be that way
The
Morgado Memorandum indicates that 25 years ago, the Carey Administration
believed that meeting the program objectives of creating a balanced
system of treatment required the creation of a plan. As part of
the 1978 reorganization of the Department of Mental Hygiene, language
found in sections 5.05 and 5.07 of the Mental Hygiene Law was
included to require the three new state agencies to each create
a statewide comprehensive plan and that such plans shall reflect
a partnership between the state agencies and local governments,
highlighting how gaps in services for the mentally disabled would
be filled. With a law on the books signed by his boss, Morgado
fully detailed in his memorandum how the planning process should
be completed.
The
memorandum detailed plans for full staffing of the existing psychiatric
hospital system, with a census of 26,000 adults in 1978. Discharge
planning – preparations made as people leave psychiatric
centers and return to communities for their care – would
be required, and only appropriate discharge plans were to be made.
Like that which was accomplished in OMRDD, the intent was to properly
fund state-operated community-based programs, and link them to
private programs. The Memorandum called for job training and re-training,
building on the skills and experience of the existing institutional
workforce.
With
regard to changes proposed for people living with mental illnesses,
the Morgado Memorandum concluded, “Recognizing that these
policies hold profound historic significance for meeting the needs
of the mentally ill, the Executive urges employee representatives
to pledge their utmost devotion to, and mutual cooperation in
the implementation of a balanced system of services.”
The
goal was explained more recently by Mr. Morgado, saying, “The
intent was to try and reconcile the service issues between the
two systems”. In the state mental health system, it was
an effort to “[A]ddress the size and remoteness of the psychiatric
facilities.” He added, “Our intent was to make them
part of the solution and less a part of the problem.”
The
greatest obstacle to overcome in deinstitutionalization is the
need for community-based housing, and the funding stream necessary
to provide it. That has been accomplished for the mental retardation
and developmental disabilities service system, but has woefully
failed for mental health. The root of the problem, initially impacting
both systems, was the Medicaid Institutions for Mental Disease
(IMD) Exclusion. Found in Section 1905 of Title XIX of the Social
Security Act, the IMD exclusion states that “Medicaid
does not cover services to . . . patients . . . (in) a hospital,
nursing facility, or other institution of more than 16 beds that
is primarily engaged in providing diagnosis, treatment, or care
of persons with mental diseases, including medical attention,
nursing care and related services.”
In
the mid-1970s, the federal law was changed, and developmental
disabilities were excluded from the definition of mental disease.
This meant that Medicaid funding could be used to meet the needs
of people with developmental disabilities, whether they resided
in an institution or in the community. For the 30,000+ people
with mental illnesses living in institutions in the mid-1970s,
50% reimbursement from the federal government was not available
under Medicaid.
Thus,
while the psychiatric hospitals have been reduced to a fraction
of the former population, the exclusion stands today for all individuals
with mental illnesses residing in any institutional setting. Medicaid
reimbursement is not available for many people living with mental
illnesses - the 15,000 New Yorkers with mental illnesses living
in adult homes as well as the 15,000 who are incarcerated.
Non-institutional
residential services are Medicaid reimbursable. If deinstitutionalization
was the goal, shouldn’t overcoming the IMD exclusion have
been central to the crafting of a plan?
There
is no hard and fast explanation as to why the goals of the Morgado
Memorandum were only half met. We simply live with the fact that
they were.
Fulfilling the Promise
To meet the goals of the Morgado Memorandum, we must develop a
comprehensive system of community-based care, focusing first and
foremost on people residing in their community. To that end, parts
of the OMRDD system success can be adapted for our purposes. OMRDD
has created an exceptional program that creates fully individualized
services for those in the system, no matter where they reside.
The same must be created in the mental health system.
The
major obstacle in comparing the two systems is that it is generally
accepted that people with mental retardation need housing for
a lifetime. That is not the case for people with mental health
needs. Recovery rates for people with even the most serious mental
illnesses are almost as high as they are for people with other
chronic illnesses. However, recovery from mental illness is largely
dependent on the availability and accessibility of care and treatment.
People who cannot get treatment for mental illness have no greater
chance of recovery than a person who can’t get treatment
for diabetes.
Compared
to mental retardation and developmental disability, for people
with mental illness there is the hope of ultimately having the
ability to live independently. Like other diseases, there is always
the possibility of set-back, loss of treatment efficacy and relapse.
What is needed is not housing for a lifetime, but a lifetime guarantee
of housing.
The
actual cost of providing housing, even to those with the most
persistent health and mental health care needs who are presently
homeless is negligible, when factored against all the other social
program costs already being incurred. In a 2001 study conducted
by the University of Pennsylvania of the New York City and State
cooperative NY/NY Agreement to House Homeless Mentally Ill
Individuals, which created nearly 3600 units of housing with
supports, and the 5000 individuals tracked by the study, they
found:
- “A homeless mentally ill person in New York City
uses an average of $40,449 of publicly funded services over
the course of a year.”
- “Supportive housing – independent housing linked
to comprehensive health support and employment services –
provides major reductions in costs incurred by homeless mentally
ill people across the seven services systems - $16,282 per
person in a housing unit year round.”
- “The annual cost of the most common type of service-enriched
housing, supportive housing, amounts to only $995 more (sic)
per person in a housing unit year round.”
- “The reduction in service use pays for 95% of the
costs of building, operating and providing services in supportive
housing, and 90% of the costs of all types of service-enriched
housing in New York City.”
- Most of the savings realized in the NY/NY program were
due to the 49% decline in psychiatric hospitalizations.
With
a proven track record, both the first NY/NY program and
the second, a few years later, are excellent examples of the housing
and supports individuals with mental illness need.
In
light of the recent news accounts regarding adult homes, nursing
homes and the homeless, tremendous public pressure to fix the
mental health system has mounted to a level not seen since the
1970s. Still, we will need to summon great political courage and
fortitude to pursue a comprehensive system of community-based
care, and there are several truths about the present state of
our mental health system we must first consider. Each has some
bearing on the direction we must take to reshape that system into
a comprehensive system of community-based care.
Those
truths include:
- Community-based care is simply not a governmental priority.
New York State spends too great a share of the mental health
budget on the state psychiatric hospital system, depriving
needed funding from the vast majority of New Yorkers with
mental health needs, who receive their services in the community.
- Prior to Reinvestment, the money saved from closing psychiatric
hospital beds went into the state’s general fund. While
hailed as a great accomplishment, the Reinvestment Act has
allowed New York State to avoid putting any general fund dollars
back into the mental health system. Today, our state simply
shifts money around throughout the system.
- The Community Mental Health Reinvestment Act expired at
the end of September 2001. In 2002, the legislature passed
a “Community Workforce Reinvestment Act”, which
will take the bulk of the savings from further bed closures
and allow it to be used to increase wages and benefits for
community mental health workers. While it will help stem staff
turnover and vacancy rates, it does not force the state to
create a comprehensive system of community-based care, something
we were promised nearly 30 years ago by Governor Carey. And,
even that measure, passed three months ago, has yet to be
signed by Governor Pataki.
In fact, although Reinvestment became the
law in 1993, effective for the 1994 fiscal year and beyond,
more than $200 million has been diverted by the Governor
and the legislature. Money that should have gone into community-based
services as beds closed was redirected to fill other state
budget needs.
- The failure to properly fund and plan deinstitutionalization
has resulted in transinstitutionalization – people have
gone from psychiatric hospitals to prisons, jails, adult homes,
nursing homes and often the streets.
- There are gaps in the community mental health system sufficient
to ensure that failure of recovery is all too great a possibility.
- Community mental health workers are underpaid, agencies
are understaffed, and quality and continuity of care are at
great risk.
- We have a mandate, stemming from the Carey administration,
which has gone unfulfilled, to fix the system.
Erroneous Assumptions
Add to these truths some rather broadly held erroneous assumptions,
and you begin to get a better picture of the direction necessary
to create a comprehensive system of community mental health services
and supports.
Those
erroneous assumptions include:
- Community-based care is synonymous with outpatient care.
- The state psychiatric hospital system must be eliminated.
- Government run services and privately run services in the
community are in direct conflict and competition.
Refuting
the Assumptions
These
assumptions predate many of us, but must be put to rest before
we can move on.
- Community-based care is synonymous with outpatient care:
We must accept and encourage access to inpatient treatment
in the community. While it is true that we no longer need
a disproportionately large number of psychiatric hospitals,
particularly in light of the fact that the length of stay
for inpatient hospitalization is a fraction of what it was
in the past, we continue to need inpatient care. It is a very
different kind of inpatient care than that which was used
to warehouse people a half century ago.
Similar to the length of stay reduction we have seen for
the successful treatment of physical health needs, inpatient
treatment can be a necessary first step to identifying,
stabilizing and beginning intensive treatment for a person
with mental health needs.
Continuity of care and effective discharge planning requires
a direct link between inpatient and outpatient services
and supports, and providing community-based inpatient services
that seamlessly move to an outpatient regimen would be the
best method of providing for a comprehensive system.
- The state psychiatric hospital system must be eliminated:
In its present form, the state psychiatric hospital system,
for both adults and children, is outmoded. With a daily census
of under 5,000 adults, and almost 1000 kids in state hospital
beds (half aren’t even housed here in New York), it
cannot be credibly argued by anyone that we are getting full
value from a system that consists of 28 state-operated psychiatric
hospitals. That does not mean however, that New York State
should get out of the psychiatric hospital business completely.
With its abundance of both financial and human resources,
our state government has the ability to provide the most cutting
edge services on a regionalized basis, with a very limited
system of hospital facilities. We can easily model this system
after the trauma center and burn center networks developed
here and in other states. Existing state properties can be
converted into state run residential communities, modeled
after the successful OMRDD system that overcame the IMD exclusion.
- Government run services and privately run services in
the community are in direct conflict and competition:
Conflict in services occur not inherently, but because of
the lack of a comprehensive system of community-based care
and proper funding for such care. Because of the unique nature
of the underlying functionality of each type of entity, proper
roles can and must be utilized to ensure that the skills and
intrinsic value attributable to each are brought to bear.
It must be noted that public employees are not opposed
to change per se; Danny Donohue, President of the Civil
Service Employees Association, while endorsing increased
pay for not-for-profit direct care workers, stated in his
2001 budget testimony, “We should be looking to improve
services in the community. CSEA worked with the state to
close institutions in OMRDD (Office of Mental Retardation
and Developmental Disabilities) and move people into the
community and today we have a better system of care. If
that’s the model…then we can be for it.”
Without a complete payment system, we will never have
a comprehensive system of care. The gaps in the system are
difficult enough to negotiate without the added burden of
gaps in payment. Therefore, it is imperative that Medicaid,
Child Health Plus, Family Health Plus and other public and
private insurance coverage be maximized. This requires the
adoption of mental health and chemical dependency insurance
non-discrimination (parity) laws. Only then will we have
the financial structure in place to meet everyone’s
mental health needs.
If Comprehensive Means “Inclusive,”
What Should Our System Include?
A comprehensive system of community mental health services and
supports has five major components. We believe it must be developed
with input from all stakeholders including consumers, providers,
advocates, direct care workers, parents, family members, etc.
1.
It is built on the recognition of a right to live in the community.
2. It is built on the recognition that a broad range of services
and supports are needed.
3. A comprehensive community mental health system must serve
multiple populations.
4. A comprehensive system in NYS includes multiple providers.
5. A comprehensive system requires coordination.
- Right to live in the community
Hospital and institutional services should be a last resort.
Recognizing a need for such services does exist, the preference
should always be for services and supports in the community.
We add to this that in all but the most extreme cases, inpatient
treatment should be provided in the community. In all cases
it should be seen as part of a larger system of care that
is therapeutic in nature and recovery oriented by design.
Simply put, the right to live in the community means as an
equal participant. No one should be denied, based on their
having a disability, the right to have a roof over their head,
a family or gainful employment. Far and away, most New Yorkers
living with mental illnesses are doing so in the community.
They are not, however, equal partners in that community.
People who tend to reject traditional mental health services
need to be engaged, not coerced. Services should be designed
to serve to engage all those who need them. Assertive outreach
throughout the community is necessary, with a special emphasis
on peer-run and peer provider organizations and efforts.
- A broad range of services and supports
It is necessary to have range of services which are responsive
to need. Treatment and rehabilitation must be the crux of
each. The traditional OMH and systemic lexicon includes crisis,
inpatient, outpatient, community support, and residential
services. While this is a pretty good list, it does not capture
the constant struggle to provide what people need and want
rather than fitting them into what is available.
There need to be supports as well as services. Supports
such as income, housing, access to health care, access to
work and family supports are what people with psychiatric
disabilities need to be able to live in the community. Through
both the Donaldson decision in the mid-70's and the Olmstead
decision in 1999, the Supreme Court has affirmed the right
of people with mental illnesses to live in the community
if they can live there with supports. And the Olmstead decision
makes clear that government has an obligation to provide
the supports that are needed.
Supports are often outside the mental health system -
e.g. income maintenance, Section 8 housing, Medicaid, Medicare,
family support, etc. Accessing, and assisting with access
to these supports is yet another reason that peer initiatives
are crucial. The Medicaid Buy-in, passed early this year,
which will allow people with disabilities to return to work,
and become taxpaying citizens at the same time they are
contributing to the cost of their health insurance, is one
example of the supports necessary.
- Serve multiple populations
Mental health issues cut across the entire societal demographic.
We need a comprehensive system of community-based care that
addresses the needs of adults, kids, seniors, people with
disabling conditions and people who cope with illnesses which
impair their abilities but are not disabling.
- Multiple providers
There is such a critical need for services at the community
level that we must utilize all the possible avenues for providing
care, assistance and support. State, local, voluntary and
for-profit; peer-run as well as professionally run should
be incorporated into a planned system of care. Utilization
of the funding stream and employer base should be structured
so that services complement, and not conflict.
It is critical to avoid battles about which service-providing
sector should provide the services and supports that are
needed. The fundamental issue is what services and supports
are needed, not who should provide them. There is more than
enough work to go around.
- Coordination
The system continues to be painfully fragmented. We have not
yet succeeded in creating a seamless system of community care.
Case management was designed to provide the glue in the system,
but it has had only limited success. Managed care was supposed
to assure coordination, but it has come to mean rationing
care, which is unacceptable in an already gap-ridden system.
New approaches are still needed. The single point of entry
could be a proper framework for this, but would require a
coordination of payment streams and service providers along
the entire continuum to include the broad range of services
and systems mentioned above. From intake to discharge planning
to services and case management, each step must be coordinated
and seamless.
Much is still needed, especially
More
"community supports" such as housing, case management,
and access to supports provided outside the mental health system
such as income maintenance, medical coverage, etc.
More
efforts to engage people in the community via assertive community
treatment, Intensive Case Management, peer outreach, etc.
- Improved crisis services
- Improved quality of services
- More funding for staff and operations, research and training
- More attention to quality of life
- Family support
- Access to employment, education/training, comprehensive
insurance coverage during employment, and placement and support
- Planned and emergency respite
To
truly be complete, the system must include response to the vast
unmet needs of people with mental illnesses caught in the criminal
justice system, people with mental illnesses who also are chemical
dependent, kids with serious emotional disorders and the rapidly
growing population of elderly people with mental illnesses.
What will a comprehensive system of
community-based care look like?
Initially,
there should be an inventory of services, needs and gaps in the
existing system. A baseline should be established and services
provided in both the public and private systems should be evaluated
for access, quality and orientation toward recovery, rehabilitation
and support.
From
there, the data should assist in the development of a state-wide
framework of treatment, recovery and support. Working through
an independent planning mechanism like that proposed in Assembly
bill A.11616, and tying recognized need to models for service
(some of which have yet to be developed), many of the long-standing
roadblocks based on the erroneous assumptions can be removed.
This
should include a regional system of state run hospitals providing
the most intensive and therapeutic services available. Such a
network will require substantial support in state funding, albeit
much less than now spent. The necessary skills and costs would
be prohibitive if the revenues came from Medicaid and private
pay dollars alone.
Each
major geographic area of the state (most likely based on county
lines, as New York has ceded primary responsibility for public
health provision to the counties) should have a number of community-based
inpatient beds. Those beds should meet the needs of the community,
with a goal of providing services that meet individual needs,
focusing on a seamless transition into a complete array of community-based
outpatient services and supports.
We
must develop a community framework of housing, case management,
services, supports, vocational and employment services, jail diversion,
and connection to physical health and chemical dependency needs,
in a fully funded, payor-optimized system.
We
must be willing to pay for it. Recognizing that bed reductions
as a source of revenue are a finite resource, we must look at
long term funding strategies. On the public side, we must capture
savings from debt service, facility closure and sale, and be willing
to make a substantial commitment of public dollars to make up
for the billions lost while 80,000 beds closed absent the dedicated
community mental health funding stream of Reinvestment. We must
maximize federal funding and programs, like the OMRDD system has.
We must optimize commercial insurance coverage through full mental
health and chemical dependency parity.
The
first step is for government to establish community-based care
as the priority of the mental health care delivery system, as
promised by Governor Carey. Then, adopting this framework could
be the cornerstone of a complete planning process, finally bringing
about a system that meets the needs of New Yorkers living with
mental illnesses, the people who serve them, and our communities
at large.
For
twenty-five years, our state’s leaders, including those
at the highest levels, have understood our need for a comprehensive
system of community-based mental health care. While clearly outlined
during the Carey administration, the direction recognized was
not pursued. While the system for mental retardation and developmental
disabilities made great strides, the mental health system has
crept backwards.
Parts
of the current mental health system, like some adult homes, nursing
homes, jails, prisons and services for the homeless equate to
conditions for people living with mental illnesses that are indistinguishable
from what was found at Willowbrook the days that Sen. Kennedy
and Geraldo Rivera walked through its doors.
We
know the promise was made 25 years ago. One question remains –
does our state have the political will to keep the promise?
Please
also see MHANYS October 18, 2002 Press Release.
