Roberta Wright Remembered
Roberta Wright (1939 – 2005) began contributing important
lessons to the field of fetal alcohol syndrome intervention and
prevention from the day she was first hired as an advocate/case
manager for the University of Washington Birth to 3 Project, now
known as the Parent-Child Assistance Program (PCAP), in Seattle,
"I do this job in large part because
I am the biological mother of a fetal alcohol effect son.
I am a recovering alcoholic. And that's probably the biggest
reason why I do it. I'd like to be part of the process by
which other women can make changes in their lives, and prevent
more of these kids from being born."
- Roberta Wright
The year was 1991, and the home-visitation intervention program
for high-risk, substance-abusing mothers had just received federal
funding. Roberta, at age 52, was like a mother to the fledgling
staff. She offered seasoned observations about client behavior,
practical advice about surmounting bureaucratic obstacles, and savvy
insight with regard to navigating community political waters. In
doing so she helped define the core components of what would become
an award winning and widely replicated program.
Roberta earned the respect (and yes, sometimes the ire) of service
providers by doing whatever it took to secure high-quality services
for her clients on the path to recovery and stability. She gained
the esteem of colleagues who could count on her both for warm support
and acerbic wit. And she forever secured the gratitude and affection
of clients who could trust her to guide them through ups and downs
as they slowly achieved their long-term goals.
Over the course of her 10+ years with PCAP, Roberta worked with
a total of 44 mothers and their families. She introduced each of
them to the hope for a brighter future.
Roberta made a difference.
"I really do love my job. There
are a lot of rewards. Women do get their lives turned around,
and I know that when a woman gets her life turned around,
it affects her kids, it affects everybody in the circle of
her life. So, we're breaking a life cycle for these kids.
These kids are not going to have to grow up and do exactly
what their mothers are doing, who are generally doing exactly
what their mothers did. So, that's why I do it."
- Roberta Wright
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A New Concept of Mental
Part A: A Focus on Strength
Transformation? Recovery? Resilience? EBP’s? We are assaulted
with a whole new glossary of terms unfamiliar to most advocates
and most professionals. What does this mean? Are these terms the
latest ways to put lipstick on a pig and make a failing mental health
system seem beautiful? What does recovery mean when we are dealing
with lifelong illnesses such as schizophrenia, or with damaged brains
such as in FASD? I can assure you that this movement does make a
difference. It is critically important for all in the fetal alcohol
research, clinical services and advocacy communities to understand
it. Recovery and the children’s System of Care initiatives
that emphasize parent empowerment and youth guided care represent
Value Based Practices and are an important counterbalance to the
Evidence Base Practice (EBP) juggernaut which has hit many state
legislatures and mental health administrations. Many of us have
had concerns that we are moving too fast in implementing EBP’s
in that we don’t yet have evidence on how to implement what
has been found to be efficacious in research studies.
The recovery movement is truly a reform in the making. Like the
System of Care movement for parents of children and youth with mental
health issues, and adult family advocacy groups like the National
Alliance for Mental Illness, the recovery movement was born after
years of consumer frustration with mental health services. A maturing
adult consumer movement began to articulate the word recovery. This
concept gained momentum as we began to see more consumers demand
a say in how the mental health systems of our country were organized.
As part of this movement consumers became trained to deliver peer
support services in mental health system.
Most recently the recovery movement has begun to embrace children,
youth and their families.
It is critical to realize, as we are assaulted with very evocative
words such as “recovery,” that sophisticated proponents
do not mean cure. Recovery in mental health, as in drug and alcohol
treatment, embraces the idea of an ongoing process aimed at universal
human aspirations for a good life. It embraces the brave notion
that an individual is not defined by their illness or condition.
A person with schizophrenia suffers greatly from their symptoms
but every moment of their life does not involve them being in a
mental straight jacket. If they come to understand their illness,
tend to it expertly with medications and a safe lifestyle, they
will have an opportunity to work, make friends, fall in love and
grow old gracefully. The recovery movement declares that those who
suffer from chronic and disabling mental health conditions have
a right to a full and rewarding life and to a peaceful spirit.
The recovery movement seeks to offer hope to those with major mental
illness that they can recover a lost life even with a severe illness.
Furthermore they can demand from their service providers hope and
encouragement for recovery. Children too can recover from childhood
traumas and mental health conditions that have thrown them off track
developmentally. We know what can build resiliency in children and
youth and a mental health system ought to be helping vulnerable
children achieve resiliency so as to not fall behind developmentally.
Recovery for a child or youth with a mental health condition can
be thought of as getting them back on track developmentally. They
can overcome developmental disruptions from having been effected
by a mental health problem, trauma, adverse social conditions or
brain damage such as FASD.
Children with FASD have had assaults to their brain that will affect
them their entire lives. As children the impact of fetal alcohol
exposure will impact their psychosocial development unless they
receive extra support aimed at preventing developmental disruptions.
Many who have raised children with FASD, knowing these facts, cheerfully
celebrate their children’s achievements and focus on what
they can do rather then on their limitations. This strength-based
approach is the core of a recovery process as it assures our youth
with FASD grow and develop as normally as possible. Young children
with FASD vary in their interests and aptitudes as do all children
and, when offered the required structure and support, they too can
develop their skills and emerge into adulthood able to find their
spirit, their identity and personhood.
These goals for individuals with serious mental health and developmental
problems such as in FASD can generate hope where before there was
only despair and a broken spirit. Not everyone can or will achieve
great things, become independent, get married or buy a house. Recovery
involves embracing realistic goals and taking the path towards these
goals as fast and as far as one can. Clearly this concept applies
to human suffering far beyond mental health problems. The core of
the concept can be made to apply to mental retardation, physical
disabilities, even the aging process. It is about finding ones spiritual
center and embracing hope and defining oneself as a human being
first and foremost.
I do hope you can see that these ideas are profoundly new ways
of looking at mental illness and disabilities. The strength-based
approach is core to psychosocial rehabilitation and, in children’s
services, to the wraparound process. But while such approaches are
consistent with these service provision reforms, the recovery concept
goes much further as it address such issues as values and meaning
The recovery movement began with adult consumers angry with service
providers who seemed to emphasize pathology and who cautioned those
with a mental illness to not expect much in their lives. Consumers
rebelled, initially speaking of themselves as “psychiatric
survivors,” angrily refusing services and undercutting their
understandable aspirations for a better life. The adult consumer
movement matured and now embraces the supports offered by clinical
services and research that offers improved and more evidence-based
Recovery and resilience concepts have major implications for the
way parents and service providers approach youth with challenges
from a brain illness or injury. When asked, many youth express dissatisfaction
with their services. Their parents emphasize “safety first”
from providers of services, but many youth feel that protective
and restrictive services stifle their developmental aspirations,
causing to become angry and refuse care. For many youth on the streets,
self-medicating with drugs and alcohol places them in the parallel
position that many adult consumers found themselves in after encountering
non-recovery oriented services.
Instead, a recovery oriented youth service would help families
and their troubled youth find a balance between safety and the normal
risk taking that promotes growth. In an effort to help youth participate
safely in normative risk taking service providers would promote
resilience through harm reduction approaches in order to support
a youth’s move toward independence and a fulfilling life.
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New Neuropsychological Assessment Service Offered
to Adults with Suspected FASD
A few months ago, a new adult neuropsychological assessment clinic
opened as part of the University of Washington’s outpatient
psychiatry service. This clinic, the Neuropsychological Assessment
Service for Adults with Suspected FASD, is designed to fill an obvious
gap – the need to provide diagnostic services for adults who
may have prenatal alcohol exposure damage, but who were never diagnosed
As adults, this population often has a difficult time getting a
proper diagnosis, as most of the available FASD diagnostic services,
including those developed by the FAS Diagnostic and Prevention Network
(FASDPN) at the University of Washington in Seattle, are well equipped
to assess and diagnose children with FASD, but are frequently not
as well prepared to assess adults. These clinics often require that
a full neuropsychological assessment be completed before a patient’s
first visit; this is the gap that our new neuropsychological assessment
service is designed to fill. The service assesses people 17 years
old or older who have documented or strongly suspected prenatal
This neuropsychological assessment service is based on more than
30 years of research experience at the University of Washington’s
Fetal Alcohol and Drug Unit. The two clinicians (Janet Huggins,
a clinical psychologist, and Paul Connor, a clinical neuropsychologist)
have over 16 years of combined experience doing research with individuals
with prenatal alcohol exposure.
We have used our research experience to create a battery of tests
that our studies have shown to be among the most sensitive indicators
of the effects of prenatal alcohol exposure. For the most part,
our battery consists of tests used by neurophysiologists across
the country. However, because of our years of experience working
with people with FASD in research settings, we can wear our “FASD
colored glasses” to compare an individual's test performance
with previous FASD research findings.
Our battery measures intellectual functioning, academic achievement,
learning and memory, motor coordination, attention, and executive
functioning. Additionally, we have added additional measures to
this battery that are somewhat different from standard neuropsychological
assessments by measuring the person’s adaptive functioning
and performing a more formalized assessment of mental health functioning.
Adaptive functions measure a person’s ability to appropriately
and independently manage their own needs. This can include basic
skills such as being able to keep themselves clean, but also includes
more complicated skills such as being able to interact appropriately
with peers and the ability to communicate his or her needs to others.
These skills are typically measured in people who are being considered
for a diagnosis of mental retardation; however, because many people
with FASD are not mentally retarded, these tests are often overlooked
during diagnoses assessments.
Another difference between our service and other adult neuropsychological
assessments is that we require the person to be accompanied by a
parent, guardian or someone who knows the person well. We interview
the caretaker about the person’s life and prenatal history
to get a more complete picture of the person we are assessing.
From this assessment of neuropsychological, mental health and adaptive
functioning, combined with interviews of both the individual and
his or her caretaker, we determine whether the person’s behavior
is consistent with FASD. Because we do not have the expertise to
measure the physical aspects of prenatal alcohol damage (others,
including the FASDPN, are the authority in this area) we do not
make a diagnosis of FASD. However, if appropriate, we will make
a diagnosis of Alcohol Related Neurodevelopmental Disorder (ARND).
And based on the outcome of the testing, we can make recommendations
about possible services through the Division of Developmental Disability,
Division of Vocational Rehabilitation or Social Security Income,
and make referrals for community resources.
Establishing this clinic has not been an easy process. It took
months of planning and consultation while we researched locations,
received the blessings of our department at the University of Washington,
and advertised the service. In May of this year the clinic opened
its doors and the response has been phenomenal.
We have received many referrals for the service, from across the
state of Washington and even from people in other states who are
interested in coming to Seattle to get tested. It has taken a while
to gain all of the insurance, state Medicaid, and DSHS approvals,
so the clinic has been ramping up slowly. But we have received more
approvals recently and we are filling up our testing slots quickly.
I am very excited about the progress made and am hopeful that this
service will be both successful and useful. We are very happy that
we are now able to help an underserved population, to help these
individuals to understand both their weaknesses and their strengths,
and to be able to provide a valuable service to the community.
If you or your loved ones would like to be tested in this clinic
please contact myself, Paul Connor, or Janet Huggins at the University
of Washington’s Fetal Alcohol & Drug Unit at (206) 543-7155.
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A New Concept of Mental Health
Part B: Grants Seek Transformation of Mental Health Care
State by state, a new grant program brashly seeks to transform
the mental health system in the United States. The federal Mental
Health Transformation Grants are the action end of President Bush’s
New Freedom Commission chaired by Michael Hogan, the state mental
health director in Ohio, and a very wise and progressive fellow.
With a broad mandate from the President, Hogan assembled various
experts, advocates and consumers. The report they produced was in
effect a manifesto that gave life to the aspirations of many consumers
who want to go beyond the anti-stigma campaigns of the National
Alliance for Mental Illness and the National Mental Health Association
and articulate the principles of recovery. Children’s advocates
led by Jane Addams of the Kansas chapter of the Federation of Families
for Children’s Mental Health were wary of imposing adult oriented
concepts – that harkened to the more familiar drug and alcohol
recovery process – upon mental health care for youths. They
insisted that the word recovery be linked with a more appropriate
child and youth term, resilience. Seven Transformation Grants were
awarded in 2005, beginning a process to promote recovery and resilience
in those with mental illness across the country. This was to be
done in concert with the rush to Evidence Based Practices (EBP)
in our systems of care. (See related article A Focus on Strength.)
The recovery movement challenges us professionals to transform
our approach to services and our relationships with our clientele.
The Transformation Grants are designed to lead this effort. The
American Association of Community Psychiatry (AACP) has produced
a guide for the establishment of Recovery
Oriented Services. I have taken on the task in my role as an
AACP board member to translate this guideline into a similar document
for children’s and youth services, but the basic concepts
apply to all ages.
A transformed system of care will be characterized by having consumer
and family advocates involved in all policy and programmatic decisions.
In children’s services this must include youth consumers.
As with adults, youth consumers should include some youth still
actively involved in their problems. It will be a necessary challenge
for those with the power to make decisions to find the way to include
youth and parent voices in a consumer-friendly format and on terms
acceptable to them.
This is the nuts and bolts of transforming a system of care for
children and youth. It will involve structuring services so that
caseloads are manageable, that caring treatment relationships can
be formed and so that psychiatrists are not impossibly rushed. Youth
will demand, passively through non-compliance or actively through
a recovery process, that they are to be listened to. They will demand
that professionals get to know their young clientele and organize
their work so as to assure services are family focused and youth
directed. In a recovery oriented system of care youth consumers
will demand that they be the leaders of their own support teams
and professionals will be truly working for them.
These concepts are being experimented with in programs for youth
in a few communities through the Mental Health Transformation grants
and the older “Comprehensive Mental Health Services for Children
and Their Families” grants (also referred to as System of
Care grants) from the Substance Abuse and Mental Health Services
Administration. At the recent 2006 biannual Georgetown Training
Institutes, during a meeting of the System of Care grantees, a critical
mass of youth participants gathered for the new Youth Track. Youth
shared their concerns regarding the care systems they had experienced,
and presented topics for consideration. At a workshop entitled “How
To Get the Most Out Of Your Appointment With Your Psychiatrist,”
the prevailing opinions among a large group of youth were that both
psychiatric appointments and the prescribing of medications were
handled very poorly. Youth felt rushed and not listened to. They
felt like prescriptions were imposed on them without explanation,
and they were not told of desired benefits or possible side effects.
What happened in such appointments, according to the vast majority
of youth, had nothing to do with their agenda and was only somewhat
responsive to their parent’s agenda. That topic caught fire.
Dr. Ira Lourie, former chief at the National Institutes of Mental
Health asked me and other reform minded psychiatrists to work with
a group of youth to flesh out this issue. I am hopeful that we will
be able to organize a representative group of youth, some with FASD
and all supported by their families, who will speak out on their
opinions of youth services.
Within these grant communities a cadre of youth consumers is developing
and is showing an ability to offer a responsible and thoughtful
critique of our system of care for youth. This will be a first step
in a long dialogue leading to a recovery process for the youth and
a new vision of a recovery oriented treatment system for youth.