September 2006

• Roberta Wright Remembered
• A New Concept of Mental Health
  Part A: A Focus on Strength
• New Neuropsychological Assessment Service Offered to Adults with Suspected FASD
• A New Concept of Mental Health
  Part B: Grants Seek Transformation of Mental Health Care

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, Washington.

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.

Authored by Therese Grant, Director of the Parent-Child Assistance Program

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A New Concept of Mental Health

Part A: A Focus on Strength

by Charles Huffine, MD

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 in life.

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 care.

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

by Paul Connor

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 children.

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 alcohol exposure.

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

by Charley Huffine, MD

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.