Newsletter Archive
Rebecca Woolis Speaks on Recovery
Rebecca Woolis, Program Director for Berkeley Creative Living Center and author of “When Someone You Love Has a Mental Illness”, spoke at the February FAMI meeting on the recovery processes for both families and for persons with mental illness.
Stages of Family Recovery Process
The recovery process for the family of someone with mental illness is a grieving process. A loved one is no longer the person we have known them to be. The grief process is not linear; we move back and forth in the stages. Each person goes through at a different pace, so family members often have different opinions about how to handle the situations they face. In spite of this, families need to be as united as possible to best help the person with mental illness.
1st Stage: Shock, disbelief, sense of security and predictability is lost. There is enormous stress, manifesting in different ways (i.e. sleeplessness, headaches). During this stage, families need to be surrounded with compassionate people who understand mental illness.
2nd Stage: Families begin to deal with the reality and take action. Deciding where to draw lines and set limits is a challenge. They will feel just about every emotion, including wishing the mentally ill person were gone (a normal reaction). A network of support and obtaining education helps families move forward.
3rd Stage: Families begin to feel a sense of basic competence, but also frustration with the system and with stigma. They begin to think of the future. Families need to learn to balance caregiving with taking care of themselves and having their own lives.
4th Stage: Families are coming to terms with the illness, adapting, using more sophisticated interventions and developing long term plans and strategies. Many look for avenues for advocacy to make a difference.
Stages for Recovery from Mental Illness
Rebecca presented a framework for helping someone move into change, using as a model the Stages of Change and noting appropriate interventions the family can use at each stage. The range of possible recovery for persons with mental illness is very wide. Some move through all the stages of recovery, while others never recognize that they are ill. “Lack of insight” into the illness, called anosognosia, is the largest barrier to recovery.
Precontemplation Stage: Persons with mental illness first experience a sense of powerlessness, feel desperate for control, and are preoccupied with their symptoms. In this stage, the person lacks insight that there is a problemor is unable to recognize it as a mental illness. Beginning to understand what is really happening is key to moving forward. Unfortunately, some people never move beyond this stage.
Family Strategy: Engagement. Families/caregivers should not press the person to accept their illness. Focus on maintaining a relationship, establishing a working alliance. Meet the person wherever they're at. It's critical to understand and accept that someone who doesn't believe he/she is ill will not submit to treatment. Trying to convince the person they're ill now only discredits you. Preserving the relationship means a chance to help when they eventually do develop insight.
Contemplation Stage: The person begins to accept and cope with the idea of having a mental illness. Ideally, they are able to get education and develop basic coping skills and behavioral strategies. A combination of medication and psychosocial treatments is most effective.
Family Strategy: Persuasion. Help them recognize the benefits of treatment and the negative effects of certain behaviors. Don't tell them or weigh in with your opinion - instead, ask them what they think are the pros/cons. Understand that they may change their mind from one day to the next. Motivational Interviewing, following the GRACE strategy, is a useful tool:
G - Generate recognition of the gap between their current life and their goals.
R - Roll with resistance to the ideas. Don't push!
A - Avoid arguments. It's still critical to retain relationship and trust.
C - Control of one's life. Help them feel some level of empowement. Encourage using skills no longer in use (i.e. playing piano, artwork)
E - Express sympathy, be warm and compassionate.
Action Stage: They begin strengthening a sense of self, regaining social and vocational roles. They are better able to manage the illness. Stigma is a big hurdle in this stage.
Family Strategy: Active Treatment. Encourage them to sustain changes in behavior that they've already begun (i.e. limiting drug use, managing symptoms). Help them identify the early warning signs in order to intervene and minimize intensity and duration of episodes (i.e. have this conversation after a manic episode). Often family members see the warning signs first. WRAP (Wellness Recovery Action Planning) is a good tool, putting the plan in writing.
Maintenance Stage: The person grows beyond the illness, and develops ways to express his/her talents and abilities.
Family Strategy: Relapse Prevention. Help them develop plans for resisting the pull to return to old behaviors and to continue to expand new behaviors. Some people are able to remain stable without medications after developing appropriate symptom management abilities, so they may try reducing or eliminating the medications, but this should only be done under the Doctor's supervision.
A deep thanks to Rebecca Woolis for her very helpful and informative presentation. Note that her book, “When Someone You Love Has a Mental Illness”, offers additional invaluable and practical advice for families on managing life through the throes of mental illness.
Bipolar Disorder: From Research to Practical Applications
At the Sept. 8th FAMI educational meeting, Jennifer Nam, Clinical Research Coordinator for Stanford University Bipolar Disorders Clinic, gave a presentation on New Treatments in Bipolar Disorder. This was followed by a Q&A session with Dr. Po Wang, Acting Assistant Professor of Psychiatry and Senior Research Scientist.
The presentation began with a brief overview of Bipolar Disorder, including background, medications and a list of symptoms. Of note is that the female gender is more commonly associated with rapid cycling Bipolar Disorder, and more often experiences depressive episodes as first symptoms. Similarly, some studies suggest men have earlier onset of manic symptoms than women. Bipolar I is diagnosed with an episode of full mania, distinguished by psychosis, hospitalization and/or major life catastrophes (i.e. destroyed relationships). Bipolar II is indicated when a person is very high functioning but feels “driven” by hypomania, which is a less severe type of mania. Persons with Bipolar II are typically depressed as often as hypomanic.
Stanford Bipolar Research results
Clinical Studies:
Research on the course of Bipolar illness shows that the incidence of mania increases with age (episodes occur more often), with early stages presenting primarily as depression. Symptoms were found to be more chronic and more often depressive for persons with Bipolar II than with Bipolar I (50% vs. 32% of time).
Research-Based Psychotherapy Studies:
Family Focused Therapy or FFT (proactive therapy + psychoeducational elements + communication skills building) in combination with medication has been shown to be more effective treatment than medication plus crisis management (family involved only during crises).
Cognitive Behavioral Therapy (CBT) with medication is more effective in delaying episodes than medication alone.
Current research studies underway at Stanford include:
Clinical Studies (all full research-quality clinical evaluations)
Seroquel in Dysphoric Hypomania (BPI) - 8 week study, study drug is added to current treatment, placebo controlled
Depakote in Bipolar Depression -8 week study, optional neuro-imaging, all participants receive active drug
Bifeprunox (Wyeth investigational drug) in Bipolar Depression - 8 week study with 18 month open drug continuation for responders, placebo controlled; drug is completely new and otherwise unavailable
Zyprexa Rescue Study in Bipolar Disorders - 2 week study: one week on placebo, one week of treatment; study drug is added to current treatment. This study is for “subsyndromal” individuals who have experienced some symptoms but have not yet had a full mania or depression. The objective is to prevent a full-blown episode.
Research-Based Psychotherapy Studies in Bipolar Treatment:
Open Study: Dialectical Behavioral Therapy (DBT) in Bipolar Disorders - Group therapy broken up into three 12-week modules covering regulating emotions, interpersonal effectiveness and stress tolerance. Groups are coed, comprised of 10-12 individuals. Participants must be seeing an individual therapist and taking medication.
Participating in a research study offers many benefits: Eligible patients may receive free evaluation, medication, hospitalization and/or outpatient treatment. Patients also generally get more intensive care than they would through insurance. For a free confidential phone evaluation, contact Jennifer Nam at 650-724-4795.
Q&A Highlights:
Q: Children and teens with Bipolar often seem to be misdiagnosed with ADHD. How is Bipolar distinguished from ADHD? A: Family history, the severity of symptoms and response to stimulants are factors in differentiating Bipolar from ADHD. Stimulants will make full-blown Bipolar worse.
Q: How rapid is “Rapid Cycling” Bipolar? Are there any specific medications for rapid cycling? A: Cycling several times a day is common. No specific meds are indicated for rapid cycling. Treatment can include many things, such as eliminating anything that worsens the cycling (i.e. stimulants, antidepressants) and checking for thyroid problems. Lamictal, Zyprexa, Tegretol and Depakote have been studied for rapid cycling, but nothing stands out as more effective.
Q: Are there any ways to diagnose Bipolar using blood tests? A: The STEP-BD (Systematic Treatment Enhancement Program for Bipolar Disorder) research in progress may yield results.
Q: How is Schizoaffective different from Bipolar? A: Both have dominant delusion and mood problems, but patients with Schizoaffective usually experience some symptoms all the time, rather than in episodes. Schizoaffective is classified in two different types: Schizoaffective BP type and Schizoaffective Depressive type. Dr. Wang believes that they may really just be cases of severe Bipolar or better (mild) Schizophrenia.
Q: Can Abilify make symptoms worse? A: Yes, Abilify can increase symptoms in some cases because it has the potential to either cut down OR turn on dopamine. For most people, Abilify cuts down Dopamine, but for some it can exacerbate symptoms.
Q: What about the diabetes risk from medications? A: Bipolar has been linked to diabetes independent of medications. One effect of the manic phase is a prolonged physiological “stress” state. A normal biological stress reaction is the production of cortisol, which in turn contributes to insulin resistance. Over time, the cumulative effect of repeated and prolonged stress-induced insulin resistance occurrences can ultimately cause diabetes.
Discussion on brain characteristics: The average brain size of persons with Bipolar is slightly smaller (~7-8%) than the average brain size of the general population. However, brain size differs from person to person by as much as 10%, so this difference cannot be used to differentiate individuals with Bipolar from other individuals; the difference can only be noted over the average of many people. Specifically, the Bipolar size difference is in the left side of brain, in the portion relating to planning. This brain size difference is more significant with men than with women.
Q: What about rTMS (repetitive Transcranial Magnetic Stimulation)? A: Specific areas of the brain govern specific functions. The further forward and more on the surface a region of the brain is, the “higher” the functioning level it governs. Further back or deeper in governs the lower, more primitive functions. The frontal, surface (forehead) region relates to higher logic, planning and complex thought, while further back and deeper in are emotions and instincts. Therefore, the mood issues in Bipolar are governed by deeper regions of the brain. rTMS (repetitive Transcranial Magnetic Stimulation) uses very strong magnets placed over the forehead area to stimulate brain cells. However, because it is totally non-invasive, it only stimulates cells down to about ½” into the brain, and so may not be as effective as stimulating the deeper cells that govern emotion. A researcher in Montreal is surgically implanting electrodes deeper into the brain in order to determine whether stimulation of the lower functioning levels connected with Bipolar can reduce symptoms (in some sense, similar to a “brain pacemaker”).
From the October 2005 Families Advocate
Upcoming MediCal/Medicare Changes and Access to Medication
Douglas DelPaggio, Director of Pharmacy Services for Behavioral Health Care Services of Alameda County, spoke at the July 14th educational meeting on the upcoming changes to medication coverage for those receiving benefits from both MediCal and Medicare. Medicare is implementing a new prescription drug benefit that will have a significant impact on the way patients access their medications. Although there are still numerous unanswered questions because the new program plan details are not finalized, consumers and families need to be informed because the changes will happen in the near future.
Who does this change impact?
This change is mandatory for “dual eligibles” - disabled persons who are covered by both Medicare and MediCal (California's Medicaid program). This change does not impact persons covered only by MediCal. If you have questions regarding dual eligibility, call the Mental Health Advocates at 510-835-5532, 9-5 M-F.
What is the Change?
Medicare has never before paid any prescription drug benefits. Dual eligibles have had their prescriptions covered by MediCal. The 2003 Medicare Modernization Act introduces prescription drug coverage with Medicare Part D, to be provided by private insurers via Prescription Drug Plans (PDP's). For dual eligibles, enrollment in one of the new Medicare Part D Prescription Drug Plans (PDP's) is mandatory. MediCal will stop paying for these prescription drugs on January 1, 2006. This change does not change other Medicare coverage (i.e. Dr. care), only prescription drugs.
How does this affect us? What are the issues?
The for-profit PDP's are expected to be much less generous than MediCal coverage. The drugs a person has been taking may not be covered by their new plan or only at high cost. Although plans must cover all antidepressants, antipsychotics, anticonvulsants, HIV and cancer medications, the insurers can use “utilization management” techniques to discourage use of many of them; for example: high co-pays or “fail first” (they must first try “preferred” medications to show that they don't work). For all other prescription drug types, PDP's are only required to cover two from each class. Over the counter medicines and benzodiazapines (i.e. Ativan, Klonopin) are not covered at all (note: MediCal may elect to cover benzodiazapines under a special provision).Information on possible coverage won't be available until October 13, when the new, proposed PDP's are approved by the Center for Medicare Services.
There will be mandatory co-pays of at least $1-$3 for covered prescriptions. Beneficiaries may have to pay the full cost of non-formulary prescriptions.
Dual eligible persons will be receiving information on the offered plans by mail, and will have a very short time to digest the information, choose and enroll in a plan. The PDP providers (private insurance companies) will be soliciting customers directly. There will be at least two plans to choose from but possibly many more. The information will be complicated and overwhelming for many mental health consumers. Anyone who doesn't select a plan by December 31 will have one assigned to him. The information won't be available until October 13, and the enrollment period is November 15 to December 31. Consumers unable to understand the change may not realize the impact until they go to get a refill in January and it isn't covered.
The appeals process is more complex, is untested, and the medications aren't covered during this time.
Providers can change their formulary with only 60 days notice to the beneficiary.
Beneficiaries can change plans at any time, but it is not known how long this process takes.
Alameda County is working on a plan to ensure consumers are able to access medications through the transition period.
What can we do now?
Stay informed: read mailings from the Center for Medicare Services, visit the websites listed below, talk with service providers.
Stay organized: keep a list of all medications, and save money in case they will cost more
In late December, refill all prescriptions.
Thank you to Doug delPaggio for his timely and informative presentation.
For more information, go to:
Medicare Information for Californians
Center for Medicare Services (CMS)
California Health Care Foundation
From the September 2005 Families Advocate
Special Needs Trusts and Trustees
Cynthia Watchorn, Attorney and Counselor at Law, and Richard Cox, Trustee and Professional Fiduciary, spoke at the June 9, 2005 FAMI educational meeting on the advantages of a Special Needs Trust and professional Trustee to provide ongoing supplementary financial support for disabled adults receiving public benefits.
Background
Cynthia Watchorn outlined what happens to a person's estate if there is no plan or only a Will in place. With no plan, the state's plan is used and what remains after Probate expenses is divided equally among the children. With a Will, the estate is divided as instructed, possibly incurring Probate expenses. Probate can be a very expensive and lengthy process (assets are frozen through the process).
Either way, beneficiaries receiving a lump sum inheritance can become ineligible for vital benefits. Persons receiving any SSI (Supplemental Security Income) may not own assets (money or “stuff”) exceeding $2,000 except for a car and a residence. A lump sum inheritance will disqualify them not only for SSI, but also Medi-Cal and IHSS. Beneficiaries who receive only SSDI (Social Security Disability Income) do not have an asset restriction, so don't need a Special Needs Trust to protect their benefits. However, a Trust is preferable over a Will to avoid Probate time and costs.
Upon receiving a lump sum inheritance, a beneficiary can immediately place it into a Special Needs Trust in order to retain benefits, but they have to know to do so and it requires an expensive court process. Also, this is a different type of Special Needs Trust, and if anything remains upon his/her death, the state will claim repayment for Medi-Cal expenses incurred over the beneficiary's lifetime, rather than the funds being distributed per the family's wishes.
Trust Basics
A Trust is a legal entity that owns assets and has instructions for what is to be done with the assets when the Trustee dies. The Trustee is the original owner who places his assets into the Trust, and continues to use and manage them until he dies. For example, the Trust may legally own your house, but as Trustee, you can do whatever you want with the house. When the Trustee dies, a Successor Trustee distributes the assets to Beneficiaries per the Trust's instructions. Because the Trust (the assets' legal owner) itself never dies, there is no Probate process or costs.
Special Needs Trust
A Special Needs Trust provides assets/funds and a Trustee to manage and use them for the disabled person over their lifetime. Certain kinds of “extras” (not food, clothing or shelter) can be purchased directly by the Trust to make the beneficiary's life more enjoyable without violating public benefit rules. The Trust can also own things that are used by the disabled person (i.e. a computer) so that his personal assets aren't over $2,000. Even though a person on SSI can own a car and a residence, you may consider including these in the trust so that if they have to be sold, the sale proceeds are still owned by the trust.
Trustee Selection
Choosing the right Trustee for the Special Needs Trust is critical. The Trustee must be knowledgeable about financial investments in order to make the Trust assets productive. He must stay up-to-date on the government benefits rules, keep a complete record of all Trust transactions, prepare any tax returns, and ensure that the value of the beneficiary's “stuff” does not exceed $2,000. He must be able to use objective, sound judgment about the beneficiary's requests so that the funds are helpful to the beneficiary, but also last over his expected life span. This means he must be prepared to say no to unreasonable requests. Often this is too difficult a role for a family member or friend. Professional fiduciaries, such as Mr. Cox, are available as trained, objective Trustees. Family members can work with them, acting as an advocate but without the financial and legal responsibilities. The Professional Fiduciary Association of California (PFAC) can recommend a Professional Fiduciary who meets their high standards of training and accountability. PFAC can be reached at 800-886-PFAC.
We wish to thank Ms. Watchorn and Mr. Cox for their informative presentation.
To contact them for more information:
Cynthia Watchorn 510-769-1326
Richard Cox 877-288-0855 toll-free
Note: NAMI California's PLAN program also provides a way to establish an Special Needs Trust and to obtain a Trustee; for contact information, please call the MHAAC office at 510-835-5010.
What's New in Schizophrenia Research
UC San Francisco Professor of Psychiatry, Dr. Sophia Vinogradov spoke at the May 12th FAMI meeting on two areas of schizophrenia research: 1) identification of early, pre-psychotic (prodromal) symptoms and early treatment to prevent full development of schizophrenia and 2) cognitive training as rehabilitation therapy for people who have already developed schizophrenia.
Prodromal Schizophrenia Research
The currently predominant theory regarding the development of schizophrenia is that it often begins with a genetic risk/predisposition which interacts with prenatal factors (i.e. malnutrition, illness or drug exposure during pregnancy) resulting in a neurocognitively vulnerable child. During childhood, environmental exposures (i.e. abuse, illness, injury) can then create serious cognitive dysfunction (the prodrome stage), and a final stress can produce a first and then repeated psychotic episodes.
Traditionally, schizophrenia research has focused on the fully developed syndrome and genetics. New research in the past decade has begun to identify opportunities to intervene in the prodromal phase to prevent full onset. In the prodrome stage, preliminary symptoms begin to appear before full expression of schizophrenia develops (before the first psychotic break).
The patterns of prodromal dysfunction are similar to but milder than adult schizophrenia symptoms, including deficiencies in attentional control, verbal and visual memory, and verbal fluency, all of which mostly rely on frontal cortex function. Studies of the structure of the brain in prodromal adolescents show reductions in frontal cortex and temporal lobe development.
Some early preventive research based on the prodromal phase intervention shows promise. Two controlled studies treated prodromal teens with antipsychotic medications. One study showed only 7% of those given Risperdal progressed to a first psychotic episode, compared to 38% of the placebo group. In the second study, 16% given Zyprexa developed full-blown schizophrenia within one year, compared to 38% given placebo.
A research program has been initiated in Maine to eradicate schizophrenia within the Portland area by proactively treating at-risk teens to prevent full schizophrenia onset. They are screening adolescents as widely as possible and providing psychosocial intervention: family education, therapy and medication where necessary to minimize environmental stress factors.
UCSF will begin prodromal studies with at-risk adolescents later this year.
Cognitive Training Research
As noted earlier, people with schizophrenia have deficiencies in cognitive functioning which is believed to be a result of malfunction on the surface of the brain. Our brains are always changing in response to our environment. Stress is known to alter basic aspects of brain function by changing the level of certain brain molecules, such as BDNF (brain-derived neurotrophic factors), which in turn affect the function of neurons.
There are two possible approaches to improve brain chemistry and its resulting function: pharmacological and behavioral. Classic psychiatric treatment is primarily pharmacological: antipsychotic medications alter dopamine and norepinephrine levels, SSRI antidepressants help control the brain's chemical responses to stress, and recently, drugs for Alzheimers are being tested for enhanced cognitive functioning in schizophrenia. In contrast, the theory of behavioral treatment is that “exercising” the brain in a positive manner will improve its chemical balance and, therefore, its ability to function without medication.
Dr. Vinogradov's research group is testing this theory by having persons with schizophrenia do behavioral training exercises (called cognitive rehabilitation therapy). UCSF has written computer exercises designed to stimulate repatterning of the surface portion of the brain controlling specific cognitive function. The exercises, similar to a computer game, trains the brain to pick up data more efficiently. For example, persons with schizophrenia are unable to distinguish small differences in sounds due to auditory processing deficiencies. The researchers are testing whether training exercises designed to teach them how to distinguish sounds better can improve their auditory processing fidelity level. A pilot study with adults with schizophrenia had promising preliminary results. In a controlled study currently underway, both the control group and the target group are showing improvement in schizophrenia symptoms, while the target group is also demonstrating increased cognitive function.
To learn more about (paid) participation in the UCSF research, call 415-221-4810 x5488 or visit http://psych.ucsf.edu/news_&_events/clinical_trials.asp
We thank Dr. Vinogradov for her very informative presentation.
Update on Sausal Creek and Villa Fairmont Short Stay programs
At our April 14th FAMI educational meeting, we received information on the Sausal Creek Outpatient Stabilization program and the Short Stay voluntary hospitalization program, now at Villa Fairmont. Telecare Corporation operates both programs under contract with Alameda County.
Sausal Creek Administrator Pansy Taft-Butkowski RN, MA described this drop-in crisis program that was developed as a response to Alameda County's very high rate of involuntary hospitalization. Sausal Creek opened in September 2002. It is open 24 hours per day, 7 days a week. A psychiatrist is on site or available by phone at all times. Other staff members on each shift include a registered nurse, a social worker and one or two crisis intervention specialists. Sausal Creek is located on the grounds of Gladman Hospital at 2026 - 26th Avenue in Oakland.
Anyone can call Sausal Creek at 510-437-2363 or drop in. When someone arrives at Sausal Creek, he/she is screened for eligibility for the program. Ineligible persons include those who are under age 18 or who are violent. People who are not eligible are not just turned away, but are referred to other programs. Those who appear to be eligible are carefully assessed prior to admission.
255 clients were served in February; the most served in any one month so far is 285. Sausal Creek is an outpatient program and so cannot serve anyone for more than 23 hours and 59 minutes. It is a voluntary program but people can be 5150'd if warranted. Out of the 6,107 clients served through March 31st, only 157 have been.
Regina Scott, Administrator of Villa Fairmont Mental Health Rehabilitation Center, talked about the Short Stay Program, which moved from the Gladman Hospital campus to Villa in November 2004. The Short Stay Program is a voluntary in-patient psychiatric program designed to help people in acute mental distress gain control of their lives. To be considered for admission, people have to have been assessed and referred by crisis staff at John George Pavilion, Sausal Creek or by the North or South County Access team.
The 12-bed Short Stay Program is housed on the B wing at Villa; there are also 12 regular Villa patients on this wing. Villa Fairmont has a total of 96 beds on 4 wings.
Villa is very happy to have this program, especially because its clients offer good examples for other Villa clients of how some people with mental illness are able to handle their problems on a voluntary basis.
The Short Stay Program was created to assist those individuals who require a level of care between acute hospitalization and outpatient services. The main components of the program consist of group work, individual counseling and social work services. The main goals of the program are to inspire hope and bring about self-empowerment by making accurate diagnoses, building connections to community supports, and teaching skills in decision-making, symptom management, harm reduction, and medication management.
The Short Stay program is very different from the regular Villa Fairmont program, which is a locked facility for people who need an average of three months for their recovery and the majority of these patients do not come to the program on a voluntary basis. The Short Stay program is a voluntary, short-term program focused on helping clients make a quick transition to the community. Regina presented some statistics: admissions ranged from 24 in November to 33 in February. The average length of stay is 12 days or less.
Our thanks to Pansy and Regina for this update.
Dan Jordan Speaks on Mental Health Advocacy Programs
Dan Jordan, Director of both Patients' Rights Advocates Program and Mental Health Advocates Program of the Mental Health Association, was guest speaker at the FAMI Educational Meeting on March 10. The role of an advocate is to represent another person's expressed interests -- that is, to speak for them on their behalf.
Patients' Rights Advocacy is a state-mandated program to ensure that psychiatric patients are not denied the rights guaranteed by the Constitution, and includes representation at hearings, investigation of complaints, monitoring care, and providing education. The state mandated ratio of advocates to patients is 1:500,000; Alameda County has 8 advocates.
The majority of Patients' Rights advocacy is representation at certification hearings and capacity hearings during involuntary hospitalizations. Certification review hearings are held to decide whether there is cause to hold a patient for up to 14 additional days (a “5250”). Capacity hearings determine whether a patient refusing medication has the ability to make that decision. The three criteria are that they must be 1) aware of their situation, 2) able to weigh the risks/benefits of treatment (informed consent), and 3) able to make a rational decision. The hospital/doctor has the burden of proof, the Advocate speaks on the patient's behalf to represent their wishes, and a hearing officer makes the decision.
A Handbook of Rights for Mental Health Patients is given to everyone entering a psychiatric facility in California. Alameda County's handbook has the toll-free number to the Patients' Rights Advocates office (1-800-734-2504) on the back. All complaints are taken seriously, even if the patient appears delusional, as there is usually an element of truth in it warranting investigation.
The Advocates also do monitoring and education: they review patient charts to ensure proper execution of treatment, watch for denial of rights, and help mental health workers understand patients' rights.
Dan mentioned AB1424, a 2002 California law mandating that a patient's mental health history, including information provided by family, be considered in decisions about involuntary treatment. AB1424 does not conflict with HIPAA, which prohibits health-care providers from conveying confidential information to others, but does not preclude them from receiving input. [Author's note: for more info on AB1424, see: www.psychlaws.org/GeneralResources/Fact14.htm or call the Family/Caregiver Advocate at 510-835-0188]
The Mental Health Advocates Program (MHAP) helps disabled clients obtain government benefits, deal with bureaucracies, and locate services. The Advocates work one-on-one with clients to get General Assistance, food stamps, Medi-Cal, Section 8 housing, SSI, etc. While working to obtain benefits, they are also educating the client in order to empower them. If the client is having difficulty communicating with a government official, they can sign an Appointment of Representation form, giving the Advocate the authority to speak for them. This can also be used to allow MHAP to communicate with family members.
The first step in obtaining Social Security benefits is to establish disability, defined as the inability to work for 12 months or more. SDI (State Disability Insurance) defines disability as being unable to do the job you were doing, whereas SSI and SSDI define disability as being unable to do any work available in the national economy.
SSI (Supplemental Security Income) provides funds for food, housing and clothing for people who are disabled, have little/no work experience, and have financial need. SSI recipients may have no more than $2000 in resources (assets), except for a primary residence and an automobile valued at <$4500 OR used at least 4x/year for medical purposes (i.e. go to a Dr. appt.) SSI recipients automatically get Medi-Cal benefits, but since getting SSI can take a year, MHAP can help apply for Medi-Cal directly. Medi-Cal will retroactively cover three months back bills. MHAP helps clients with the complex SSI and Medi-Cal application paperwork, as well as negotiating the 2nd “Reconsideration” step. They are skilled at answering SSA's (Social Security Admin's) questions without triggering rejection criteria, and can assist or represent the client at all hearing levels. SSA only collects facts for a 12 month period, while MHAP documents the full illness duration to establish more compelling disability evidence.
While receiving SSI benefits, SSA may declare an overpayment if resources exceed $2000, the recipient was working and SSA neglected to stop payments, etc. MHAP can help negotiate a waiver. The 2004 Red Book, which outlines work incentives, is a valuable, free resource when considering work. Call SSA at 1-800-772-1213 to request Publication 64-030.
SSDI (Social Security Disability Insurance) may be available for those who have worked during the past five to ten years. There is no limitation on owning resources. The benefit amount is based on prior earnings, and might be supplemented with SSI if below the SSI rate. SSDI clients receive Medicare instead of Medi-Cal.
The Mental Health Advocates are available 10am-4pm at the Mental Health Association office at 954-60th Street, Oakland, CA 94608, or by phone at 510-835-5532.
We thank Dan for his informative talk.
Potential Adverse Effects of Psychotropic Medications
Speaker: Alice Myong, PharmD, Clinical Pharmacist Specialist, Alameda County Behavioral Health Care Services
Dr. Myong reminded the audience to keep in perspective the relative benefits of psychotropic medication treatment when considering the potential drug adverse effects. She provided a handout listing each category of psychotropic medications with common, less common and rare potential adverse reactions. She explained that the effects listed don't always occur and are not the only ones that consumers can experience. She then moved to a detailed discussion of each medication class:
Antipsychotics
Antipsychotics fall into two categories: Typical and Atypical:
Typical antipsychotics were the first generation developed and had many highly undesirable side effects. Movement disorders (such as muscle spasms or stiffness, restlessness, jittery, parkinsoniasm or shuffling stiff movements) are common, generally occurring towards the beginning of treatment and can be reduced with additional medications. Tardive Dyskinesia (TD), which is worm-like movements beginning in the mouth and spreading to the rest of the body, occurs less commonly, usually after six months or more on the medication. TD is not treatable, usually irreversible and must be watched for to switch to another antipsychotic. Other effects include “anticholinergic reactions” such as dry mouth, blurry vision and constipation (common) or hyperprolactinemia - increased levels of a brain hormone which causes sexual dysfunction, menstrual upset, etc (less common).
The newer Atypical antipsychotics have eliminated many of these side effects, yet are just as effective as the typicals at treating the positive symptoms, and also treat the negative symptoms (loss of personality traits). However, the Atypicals have their own set of side effects, such as huge increases in weight over short periods of time, blood sugar or lipids can go up, precipitating or worsening diabetes or cholesterol problems, increased appetite and cholesterol levels. These can be mitigated with diet and exercise programs and monitoring. Lipid and glucose blood monitoring is recommended before treatment begins to establish baseline, then at six months, one year and annually after that. More frequent monitoring may be warranted if any lab result shows anomaly.
Drowsiness and dizziness upon standing are common effects usually seen right away with Clozapine, Risperdal and Seroquel. Patients are advised to sit or stand up slowly to prevent falling. These effects tend to normalize as the body gets used to the medication.
Clozapine, the first Atypical antipsychotic has some specific side effects, including increased salivation, especially at night, which can completely drench the pillow and occasionally cause aspiration (getting saliva into the lungs). Sleeping on one's side will prevent this. There are drops and sprays that might help as well as extra layers to cover the pillow. Agranulocytosis, a drop in white blood cells is a rare (1-2% of people) but potentially fatal side effect with Clozapine. Weekly blood tests are required for patients taking Clozapine for the first six months, then biweekly or monthly after this. If signs of agranulocytosis develop, the patient is taken off Clozapine over a period of time (months), decreasing the dose slowly while adding in increasing doses of a different atypical, such as Abilify. Monitoring of the blood Clozapine level itself is done rarely (i.e. to see why it's not working, if someone is really taking it).
The diabetes risk with some of the Atypicals has not been directly correlated to increased appetite or weight gain. Additionally, the current theory is that increased weight gain and diabetes risk is not to linked to higher doses. Some patients have developed diabetes without increased weight and at low doses. One theory is that the antipsychotic has a direct effect on the pancreas, increasing the propensity for diabetes. A patient should not necessarily change medications to avoid the possibility of diabetes. For example, if a person has only done well on Clozapine, they might be best off trying to avoid diabetes through diet and exercise or treat it if it develops.
All of the Atypicals have similar efficacy at their critical dosage. Doctors sometimes have biases towards one or another, but there is no data so far to support that one is more effective than another.
Antidepressants
The older Tricyclics are very effective but cause a lot of side effects such as sedation, dizziness, dry mouth and constipation. They can also cause serious heart rate problems, from arrhythmia to heart stoppage. The heart effects are less common, typically seen at high dosage and with patients with a history of heart issues. The Tricyclics can also be deadly in overdose.
The newer SSRIs are much safer in overdose and have less heart effects. They can be sedating but are more often activating, resulting in insomnia or jitters. They also cause quite a bit of sexual dysfunction and can trigger headaches. Headaches are treatable with over the counter medicines and often go away as the body adjusts.
MAO-Is are very effective but difficult to take due to stringent diet restrictions (no cheese, cured meats, etc) to avoid potentially fatal hypertensive crisis. MAOI's also have side effect like insomnia and lethargy.
There are also several “Atypical” antidepressants, that have individual profiles and mechanisms of action. Bupropion/Wellbutrin is a little bit activating which is offset by taking in the morning. It causes virtually no sexual dysfunction, and so is sometimes added to SSRI treatment to counteract this effect. It can cause seizures in about 0.4% of people, particularly those with a history of seizure or eating disorders.
Remeron can be very sedating and increases appetite. These effects can be useful for elderly patients who have difficulty sleeping or keeping weight on. Interestingly, these side effects actually decrease with increasing dosage.
Effexor is quite similar to the SSRIs at low dosage, but causes epinephrine type effects at moderate dose, and also some dopaminergic effects at high dosage, including hypertension (diastolic only). Persons taking higher does of Effexor should monitor their blood pressure. Other side effects are similar to SSRI's - insomnia, agitation and jitteriness are possible. The UK's equivalent to the FDA (MHRA) has concluded that the toxic effects on the heart at high doses are significant enough to regulate/limit which doctors can prescribe Effexor, but the US FDA has not imposed similar restrictions.
Duloxetine/Cymbalta, a new antidepressant just approved last fall, is not on the BHCS formulary yet, but has a mechanism of action similar to Effexor except without the dopaminergic effects. It can cause insomnia or agitation, and stomach upset or irritation is common so it should be taken with food.
Serzone has been removed from the market in Canada and Turkey due to liver toxicity. Although this effect is very rare (~1:100,000), it cannot be predicted and so can be fatal. Serzone is also very sedating and can cause dizziness. Because of these issues it is not used very much. Desyrel/Trazadone is also sedating and is not used much for depression any more. High doses are needed for the antidepressant effect and the side effects become too strong to tolerate. Desyrel is still used at lower doses as a hypnotic/sleep aid. One serious although very rare side effect is sustained penile erection (hours), which can require immediate medical treatment.
Mood Stabilizers
There are a few medications (i.e. Trileptal) that are not yet FDA approved for this use pending sufficient data, but are used frequently based on anecdotal evidence of effectiveness. Dr. Myong covered the common/approved medications:
Lithium's side effects include sedation, thyroid problems, excessive thirst, upset stomach, weight gain, “intentional” hand tremors (intentional = only when hand is in use, not at rest), confusion, and kidney toxicity at higher doses. It can cause problems with heart rate, although not typically at usual therapeutic doses.
Depakene/Depakote and Tegretol are more effective than Lithium for mixed and rapid cycling Bipolar. Both are sedating and hard on the stomach, so are best taken with food and possibly at bedtime. Depakene, the generic valproic acid formulation, is particularly irritating to the stomach since it doesn't have any enteric coating. An acid reducer such as Tagamet may be needed to offset stomach irritation. One family member's son was losing hair on Depakote and Dr Myong said that this can be reversible and that taking Zinc or Selenium supplements can be helpful.
Equetro, Tegretol and Carbatrol are all the same molecule (carbamazepine). Although only Equetro has FDA approval for Bipolar treatment yet, all three are used. A rare side effect is aplastic anemia, which can reduce the ability to fight infection.
Lamictal is good for Bipolar with depressed presentation. A rash can result if it is started at too high a dose or increased too fast. Left untreated, this rash can spread across the body and progress to the point of seriously weakening the skin and leaving the patient at risk of infection. Other medications (i.e. Depakote) can increase this risk. Patients should watch closely for any signs of rash or signs of allergic reaction (i.e. fever or heart rate changes) and go to the hospital right away if they show up. Lamictal can also cause drowsiness, dizziness, nausea, etc, but not a bad as Depakote or Tegretol.
Combinations of mood stabilizers are typically used for treating Bipolar (i.e. Lithium and Depakote).
Anti-Anxiety
Benzodiazepines (Valium, Zanax, etc) are sedating, can in rare cases cause memory loss and dizziness. Respiratory depression (decreased breathing) is a risk at high dosage, especially in combination with alcohol, and can result in coma or even death. Benzodiazepines are addictive and so represent an abuse potential, so are not recommended for long term use and should be monitored closely for those with a history of substance abuse.
Buspar doesn't have the respiratory effects and so is safer, but there are varying opinions on it's effectiveness. It is activating, so is best taken in the morning. It can also cause agitation and jitteriness, minimized by cutting back on the dose. Buspar takes about four weeks to see the benefits, so patients may start out on a benzodiazepine to get immediate results, and then weaned off as the Buspar begins to work.
Hypnotics (Sleep Aids)
People sometimes use Trazadone, Benzodiazepines or Benedryl to help sleep because of their sedating effects. Specific hypnotics include:
Ambien and Sonata don't have significant side effects aside from drowsiness and dizziness, and have a low “hangover” effect (next morning drowsiness), especially compared to Benzodiazepines. They are not intended for chronic use (no more than 10 days) since data beyond this is not yet available.
Lunesta, recently approved by the FDA, also has no “hangover” effect and can be used up to six months because the body doesn't build up a tolerance to it. Additional side effects may become known as this drug is used on a commercial scale.
ADHD Meds
There is an increase in adult diagnoses of ADHD in recent years. Typical treatment is psychostimulants such as amphetamines (i.e. Dexedrine, Adderall) or methylphenidates (i.e. Focalin, Ritalin). These decrease appetite and cause insomnia, so are best taken in the morning after eating. There are concerns about growth stunting, but the current consensus is that the full growth height is ultimately reached (just more slowly attained). They can also cause rapid heart rate and increased blood pressure at higher doses. There are also concerns about addiction, but studies have shown that truly ADHD persons who are untreated will often self-medicate with street drugs, so the appropriate treatment of ADHD meds can prevent street drug addiction.
Strattera is a new ADHD drug that is not a stimulant. It was originally developed as an antidepressant but was found to be more effective in treating ADHD. It can be distressing to the stomach and possibly sedating, so may be best taken with food and close to bedtime. The drug trials didn't indicate any common or serious side effects, but it's possible more side effects will show up after the drug is on the market for awhile.
Additional Information/Answers to specific questions
Medications that cause stomach upset are best taken with food. A glass of milk, a few crackers, or other small snack is typically sufficient to offset the side effect.
Risperdal can be taken with or without food.
The top dosage for Abilify depends on what it's being used for. For Schizophrenia, a dosage of 10-15 mg is sufficient in most cases. Higher levels (up to 30mg) didn't increase the effectiveness in trials, but could be for some people. Changes of Abilify dosage should be given at least two weeks to take full effect. For Bipolar, Abilify has only been tested and approved at 30 mg dosage. There isn't information on effectiveness for Bipolar at 15mg.
Synthroid does not affect the pancreas.
Use of two antipsychotics in combination is unusual. The literature thus far does not indicate any additional effectiveness although it does happen on occasion (i.e. if someone is slowly changing from one medication to another and reaches a highly stable point and wants to stay on this mixture).
Strategies for Combating Stigma
Severe mental illnesses like schizophrenia strike with a two-edged sword. On one side are the biological and psychosocial factors that affect the course of schizophrenia and lead to psychotic symptoms, diminished social functioning and depleted support networks. On the other side is the stigma of severe mental illness that leads to prejudice and discrimination. Stigmas are negative and erroneous attitudes about these persons. Unfortunately, stigma's impact on a person's life may be as harmful as the direct effects of the disease.
Several common misconceptions are prevalent in stigmatizing attitudes. They include the notion that people with mental illness are homicidal maniacs who should be feared and kept out of most communities, or that they are rebellious free spirits who need to be cared for, or they have childlike perceptions of the world, are irresponsible, and their life decisions need to be made by others.
The general public seems to disapprove of persons with severe mental illness more than of persons with physical disabilities. Mentally ill persons are perceived to be in control of their illness and being responsible for causing it.
Negative attitudes like these have a significant impact on the disabilities associated with mental illness. One study found that 75% of family members believed that stigma decreased their children's self-esteem, hindered their ability to make friends and undermined their success in obtaining employment.
Various advocacy groups (e.g. NAMI and MHA) and community service groups and government agencies attempt to replace negative stereotypes with accurate and more hopeful views of mental illness. These advocates promote a variety of strategies, including protest, which seeks to suppress stigmatizing attitudes; education, which replaces stigma with accurate conceptions about the disorders; and contact, which promotes direct interactions between the public and people with mental illness.
Protest of situations where stereotypes and stigma occur is one way to diminish the impact of such representations. Protest brings public attention to unfair depictions of mental illness and, when effective, can result in reduced frequency of publicly endorsed stereotypes. One effect of protest is to develop suppression of unwanted thoughts about mental illness. However, there are limits to suppression, since it is suggested that members of the general public who attempt to suppress thoughts of negative stereotypes may actually be reinforcing those stereotypes. The effectiveness of protest over an extended period of time needs to be studied.
A second way to impact stereotypes and prejudice is by providing information that contradicts them. Education and information programs that address minority group stereotypes have used books, videos, slides, and other audio-visual aids to highlight false assumptions about groups. Such formats can be augmented by discussions, after which participants are more likely to reject false assumptions and remember accurate information. Participants may also obtain information through simulations, e.g. participants experience the intrusive nature of auditory hallucinations by trying to complete simple work while listening to an audiotape of irrelevant and mixed-up voices. Providing sufficient information to counter stigma regarding symptoms is difficult in brief programs. In general, efforts to change attitudes and beliefs about minority groups reach those who already agree with the message.
Contact with mentally ill individuals may be a very important strategy for decreasing stereotypes and stigma. Persons with mental illness must have formal opportunities to contact and interact with the general public. Many state departments of mental health have developed offices of consumer affairs to foster such contact. Contact programs are more successful when all participants have equal status. Hence, persons with mental illness need to be presented as one of many citizens attending a program, rather than as the “token mentally ill patient”. Equal status is facilitated when persons with mental illness are cooperating with others on a work task. In this way, citizens with mental illness are viewed as competent and bring needed skills and energy to the chore. Status is also facilitated when contact provides opportunities for friendly and intimate interaction among participants. Rather than limiting the engagement to businesslike exchanges, stereotype and stigma are diminished when members of the public have mutual and informal conversations with persons with mental illness. Reducing stigma is essential for improving the quality of life of our mentally ill citizens.
Condensed from American Psychologist, September, 1999
Improving Patient Communication
European researchers have developed and tested a new way to help patients with schizophrenia convey their needs to psychiatrists and others who care for them. The Two-Way Communication Checklist is a list of topics that includes drug side effects, sexual problems, sleep disturbance, fatigue, boredom, anxiety, loneliness, family problems, housing, money, social activities, and overall satisfaction with treatment. Patients are asked to state which of these subjects they want to discuss with a clinician during a regular meeting. They are also asked how well they are feeling and how well they are coping with everyday life.
More than 100 patients with schizophrenia in seven European countries were divided into two groups, and half received the checklist before a scheduled visit to their clinician. Immediately afterward, all 100 were asked how well they thought they were communicating with the clinician and how they felt about their care.
Use of the checklist led to immediate changes that improved the patients' attitude toward treatment and their relationship with their therapists. Patients who received the checklist were more likely to have their treatment plans changed after the meeting, and they felt better about their treatment afterward. The improvement was moderate but lasted at least six weeks.
The more items a patient checked, the greater the chance of change in the treatment, so the patients most in need may have benefited most. They may have found it particularly difficult to think clearly, to remember what to say, or to take any initiative in conversation. The checklist served as a reminder while giving them formal permission to state their needs.
The Two-Way Communication Checklist is available (in nine languages) at www.2coms.homestead.com.
From September, 2004 Harvard Mental Health Letter
Brain Mapping May GuideTreatment for Depression
For the first time, researchers have mapped what happens in the brain when a patient recovers from depression using cognitive behavioral therapy, a common form of psychological treatment aimed at breaking the bad habits of thought that bring people low. The changes in the pattern of brain activity are quite different from those observed when patients recover with antidepressant drugs, and in some areas, even opposite, according to recent findings. The mapping may provide a first step toward using brain scanning to determine which patients should receive antidepressants and which should receive psychological training, a decision that now is often based on trial and error.
Researchers also predict that the study could help raise the public understanding of cognitive behavioral therapy, a series of lessons that trains patients to recognize their negative thoughts - “I'm worthless” or “it's hopeless” - and combat them with facts. More highly-directed and shorter-term than ordinary talk therapy, the psychological practice is already solidly established and is routinely paid for by insurance companies, but it tends to get much less attention than antidepressant drug therapy.
This study's senior author, Dr. Helen Mayberg, and her colleagues used a brain-scanning technique called positron emission tomography (PET) to analyze for 15 or 20 sessions the brain metabolism of 14 subjects whose depression lifted considerably after cognitive behavioral therapy. They found, among other things, that some areas in the cortex - the outer rind of the brain associated with higher functions, such as thinking - appeared to become less active, seemingly because patients learned to ruminate and worry less. With antidepressants those regions became more active. It appears that depression stems from a malfunction not in a single spot in the brain, but in a network or circuit of brain connections.The findings from this study may provide some clue as to what is going on in the brain when the person is depressed, as well as indicating what kind of treatment may work best for the individual patient.
Condensed from The Boston Globe, 1/6/04, via NAMI Sacramento newsletter, February 2004
Caregivers Need Assistance With Residential Planning
According to several surveys, between one-third and two-thirds of adults with severe mental illness live with their families, most with aging parents. As parents age, they face the reality that declining abilities and health problems will eventually limit their ability to provide care. Older parents often express apprehension over what will happen to their offspring with severe mental illness when the parents become frail or die. Without definite plans, offspring who outlive their parents may experience placements in an unprepared service system. Although a majority of parents have made financial plans for their offspring, only a small percentage of parents have done any residential planning. This is a difficult problem for parents to resolve.
A recent study was undertaken to identify predictors of the extent of residential planning made by aging parents. Higher stages of planning were associated with a number of inter-related factors: more self-awareness of the changes of advancing age, lower subjective burden of providing care, less use of avoidance as a means of coping, discussion of plans with the disabled offspring, and the desire to have family members assume future care responsibilities.
The self-appraisal of being adversely affected by the aging process was one of the strongest predictors of residential planning stage. The perception of parents that they will become less able to persist in the caregiving role appears to be more significant than the actual demands of caregiving. If parents' awareness of becoming more disabled leads to realization of the need to plan, then practitioners face the task of assisting those who have not yet planned to begin examining their limitations.
The greater the subjective degree of burden felt by the caregiver, the less is the tendency to begin residential planning. Parents who feel overwhelmed with daily hassles may be unable to take the necessary steps toward place ment, such as getting information about residential settings or exploring the procedures needed for application. They may lack sufficient energy or patience to confront the demanding task of residential planning.
Other parents may wish to avoid dealing with the residential issue as a way of coping with individual circumstances. They want to preserve their offspring's self-esteem by avoiding situations that might lead to failure or further deterioration, such as moving away from the parental home.
Older parents tend not to involve offspring with disabilities in planning for fear that such involvement would devastate their offspring. However, those parents who did involve their offspring in discussions about the future were further along in residential planning than those who did not. But families can be stymied in their planning efforts if their offspring refuse to go along with the plans made. Fewer than half of the older parents, in the current study, who had involved their offspring in planning discussions reported parent-offspring agreement. This suggests that parents may need help from mental health professionals with involving offspring in the planning process and resolving disagreements about future living arrangements.
Greater residential planning was also associated with the desire to have family members serve as future caregivers, though only one quarter of older parents thought that such arrangements would definitely occur. Family discussions, especially those involving siblings of the ill member, are an important part of the planning process. Thus, in addition to learning about available resources and how to obtain them, many families need help with involving siblings and other family members in future care.
Although older parents tend to regard their overall interaction with the service system as unsatisfactory and a contribut ing factor to their overall burden, they had little criticism about professional assistance with planning. Nevertheless, very few older parents actually turn to mental health profes sion als for planning assistance.
This study suggests that in addition to providing relevant informa tion and alleviating feelings of intense burden that undermine residential planning, service providers can best assist older parents by encouraging them to recognize age-related changes in themselves that signal the need to plan, and by helping them to involve the entire family in the planning process.
Condensed from Psychiatric Services, July, 2004.
Dr. Wang Discusses Drugs for Bipolar Illness
Po W. Wang, M.D., Senior Research Scientist at Stanford University Bipolar Disorders Clinic, was guest speaker at the FAMI educational meeting on March 11, 2004. The Bipolar Clinic is a research clinic where patients are seen and provided with basic treatments or more advanced treatments. Neuro-imaging is also part of the research program, as well as some studies on specific medications.
This past year has been remarkable for development of drugs for bipolar disorder. In the last six to eight months, the number of bipolar medications has doubled. This is because in recent years there's been a realization that bipolar disorder is not just depression plus mania; it's really something different.
The first medication found to be effective in bipolar disorder was lithium, which came out in 1959. Lithium is effective for classic bipolar disorder in which the person becomes euphoric and then gets depressed. It's also good for augmentation, to help other drugs work better. It has some unpleasant side effects, which is the reason it's not used much anymore.
The next group of drugs found to be effective were in a class known as anticonvulsants. When Depakote came out, it took over from lithium because it was generally more tolerable. Other anticonvulsants have come into use, including Tegretol, Neurontin, Lamictal, Topamax, Trileptyl and Zanisamide. They all have varying degrees of effectiveness against the array of problems which can be seen in bipolar disorder. Tegretol has not been approved by the FDA for bipolar disorder even though it has many studies behind it indicating its effectiveness. The reason it has not been approved is that it is off patent and it costs a drug manufacturer $1.4 billion to get a medication through the process. Tegretol is available in regular formulation and extended formulation.
Trileptyl works much like Tegretol and is interesting because it causes neither weight gain nor weight loss and is also very safe. Safety of a a drug is indicated by warnings in the Physicians Desk Reference (PDR). The safest drugs just have a plain little black text. The next level of safety is indicated by bold black text, and the most serious warning is shown by bold black text in a big black box. These drugs must be used with great care.
Another class of drugs, the antipsychotics, which are regularly used in schizophrenia, are now being used in bipolar disorder. They include Clozaril, Zyprexa, Risperdal, Seroquel, Geodon and Abilify. Of these, Clozaril is best for mania, and the other five are about the same. If nothing else works, Clozaril works. It does, however, have some bad side effects. It was actually taken off the market after it first came out, but was then brought back because it is so effective. It came back with strict stipulations: everybody had to have blood drawn once a week for the first six months, and after that, once every two weeks. If the blood work is not satisfactory, the pharmacy cannot dispense the medication. Also, every patient must be registered in the national registry so that it can always be known what he is getting.
Zyprexa was the first antipsychotic to be studied thoroughly for bipolar disorder. The manufacturer, Eli Lilly, studied it not only for bipolar mania, but also for bipolar depression, the first drug to be studied for this disorder. They studied the difference between bipolar depression and regular depression. Lilly also came up with Symbiax, which is a mixture of Zyprexa and Prozac. They also did a study on Zyprexa in maintenance, i.e. long term use, which nobody had done before.
Risperdal, which actually came out before Zyprexa as a treatment for schizophrenia, then began to be studied for bipolar disorder, as were the other antipsychotics also. They all had double-blind, placebo-controlled studies, and they were all shown to have some efficacy. One important advantage that Risperdal has is that it's available in an extended release, injectable form and it's good for a couple of weeks. Because of their effectiveness in bipolar disorder, there is some push to think about changing the name of this class of drugs from antipsychotic to psychotropic.
Another type of “drug”, omega-3 fatty acid, may have some use as an additive to drug treatment. It's found in fish oil and flax seed oil. It's supposed to help in preventing new episodes.
The treatment for bipolar depression is not the same as that for regular depression, and it is important to make the distinction. The use of antidepressant in bipolar depression runs the risk of making matters worse. The situation is complicated. Most people who are eventually diagnosed as bipolar start off with depression, so making the correct diagnosis can be tricky. There are a few tenuous guidelines: 1) Bipolar patients tend to be younger. 2) Post-partum depression is more likely to be bipolar. 3) Vegetative depression - low energy, overeating and over sleeping (the couch potato syndrome) - tends to be bipolar.
A troubling side effect of many of the medications is that they tend to cause weight gain, Clozaril and Zyprexa being the worst. The drugs that do not cause weight gain are Lamictal, Topamax, Zanisamide, Geodon and Abilify. The reasons for this are not clear.
The FDA recently issued a warning for all of the antipsychotic drugs: Watch out for diabetes, irrespective of weight. We know that weight is a problem and diabetes is a problem, but because of the many factors involved in the development of diabetes, it's hard to say whether the drug is actually involved or not.
Bipolar disorder was not recognized before 1959. Prior to that date, a person who actually had bipolar disorder was diagnosed as schizophrenic. Even now the line between the two illnesses can sometimes be blurred. There are many misdiagnoses, and usually the error lies on the side of underdiagnosing bipolar disorder.
We wish to thank Dr. Wang for his informative presentation.
NIMH Underfunds Research on Serious Mental Illness
The National Institute of Mental Health (NIMH) continues to underfund scientific research into serious mental illnesses, in spite of the illnesses' enormous economic and societal costs, according to a report released recently by the Treatment Advocacy Center and Public Citizen. NIMH has allocated funds to research irrelevant to its core mission, leaving serious mental illnesses grossly underfunded compared to other diseases.
From 1997 to 2002, the period covered by the report, the NIMH budget doubled from $661 million to $1.3 billion. However, the proportion of money spent on research of serious mental illnesses - defined as schizophrenia, bipolar disorder, autism, severe forms of depression, panic disorder, and obsessive-compulsive disorder - fell by 11% to only 28.5% of the budget.
It is estimated that 11.6 million adults in the U.S. have severe mental illnesses. At any given time, there are approximately 250,000 people homeless or incarcerated who suffer from a severe mental illness. Individuals with a severe mental illness account for 58% of total direct costs for all mental illnesses, an amount that includes $40 billion spent under federal programs such as Medicare. However, only 5.8% of the NIMH budget funds “clinically relevant” studies - those that are reasonably likely to improve the treatment and quality of life for individuals presently affected.
The report's authors urged Congress to hold hearings and mandate the percentage of the NIMH budget that is devoted to research on serious mental illness. They also called for better coordination among the various parts of the National Institutes of Health and the National Science Foundation so that research is funded by the appropriate institutes and NIMH strengthens its focus on serious psychiatric disorders.
This report is part of a series of reports monitoring NIMH's research. To view the report on the web, go to www.psychlaws.org
Crisis Response Program
The services offered by the Crisis Response Program were described by Dr. Maryann D'Onofrio, Director of the program, and Keith Olson and Carrie McChesney, two members of the mobile team, at the FAMI educational meeting on November 13.
The Crisis Response Program consists of a mobile team and two outpatient clinics - one located on W. Grand Ave. in downtown Oakland, and one on Foothill Blvd. in San Leandro. There is also a social worker stationed on a part-time basis at the Valley Community Support Center. The clinics provide brief services, usually 30 days or less, and also serve as the point of entry into longer-term mental health services. So when a client comes into a clinic, he is evaluated as to what his needs are. If it appears that he is a member of the "target population",i.e., a chronically mentally ill adult, he may be assigned to a service team for longer-term help.
Assignment to a service team may be done immediately once the individual is out of the hospital, or it may come about after the clinic personnel have been working with him for a while and have determined that he needs a higher level of care. That determination is made on a case by case basis and there are certain criteria that must be met: The person must have a diagnosis of chronic mental illness and he must be unable to function well in the community. For example, he may not have housing, he may have difficulty handling his finances and in complying with medication, and he may have other medical problems as well. From time to time, these difficulties may land him in the hospital. With the support of a service team, this kind of individual may be able to function better in the community. It is not necessarily true that a person must have cost the county at least $20K in hospital expenses in order to qualify for case management. Even a person who has had a first break might be assigned to a service team, depending on his history and the support he might have in the community. On the other hand, there are those folks, usually with a lower level of symptomology, who only need outpatient services or some kind of community support. This group comprises the majority of people who are seen at the outpatient clinic.
The other component of Crisis Response Services is the mobile team. Currently, the mobile team is concentrating its efforts on the Oakland area because that is where about 70% of the 5150 detentions happen. Geographical considerations and time limitations prevent the mobile team from responding immediately to calls from south county areas. However, this area is not just ignored. A call from south county will be transferred to the on-duty clinician in San Leandro. If it's not an emergency, arrangements can be made for an appointment at a clinic or for an outreach visit. If it is an emergency situation, then the police should be called. In the valley area, a call can be transferred to the part-time (M,Th,F) worker there. He may be able to get the person to come in for an outpatient appointment, usually the same day, or else make an appointment at the south county clinic. Often when there is a possible 5150 situation in the Oakland area, the two-member mobile team will go out to assess the situation. There are different ways they get their calls. The team has a police radio and a police code, so the police can dispatch the team to a given location. Or if the call comes into the mobile team's office number from a worried family member, the situation can be discussed and, if necessary, the mobile team will be sent to the location with or without the police, depending on what is known about the person's background. Usually the team will have the police stand by just in case it's a 5150 situation. Often the police appreciate having input from the mobile team. The police have less expertise, limited training, and less time to deal with a person with mental illness. They are more likely to go with what they consider to be a safe alternative, which is to 5150 the person to John George and let someone else make the ultimate decision. Conversely, the person may be sort of acting ok when the police arrive and the police may not 5150 him. But if the mobile team has talked to family members and others, they may conclude that a 5150 is necessary.
Although the mobile team does have the authority to write a 5150, they prefer to see if there are alternatives which can divert individuals away from John George. One alternative is the availability of crisis outpatient clinics. Another is Sausal Creek which can accept voluntary patients for up to 24 hours. When the mobile team writes a 5150, there is an 80-90% chance the person will be admitted to John George; when the police write a 5150 there's a 30-40% chance. The aim of the mobile team is to write effective 5150's. In an effort to educate the police about mental illness, members of the mobile team attend police line-ups and take the opportunity to address the officers, provide brochures and answer questions. The goal is to get to every single officer who will potentially respond.
There is a process called Court-Ordered Evaluation described in the Welfare and Institutions Code whereby anyone who is worried about the behavior of a person can contact a designated agency (Crisis Response Program, mobile crisis team) and request a prescreening. If the prescreening mobile team feels there is reason for the complaint, that agency sends a petition to the superior court which can order the person to appear at John George for evaluation. If the person fails to show up, he can be escorted there by police. However, the process takes many days and must pass through many hands and is rarely used. It does not carry more power than a 5150 because the criteria are the same.
To contact Crisis Response call 1-800-491-9099, phone open 24 hours/7 days for screening and referral. Mobile Team hours are noon-8 pm, M-F. Mobile team office phone 268-7837.
We wish to thank Dr. D'Onofrio, Keith Olson and Carrie McChesney for their informative presentation. from the December 2003 Families Advocate
Faint Smells of Schizophrenia
People who suffer from schizophrenia exhibit symptoms such as apathy, disorganized thinking, hallucinations, and delusions, as well as difficulties in discerning odors. According to a new study, olfactory problems can signal impending schizophrenia months before the ailment's more disturbing symptoms kick in.
Neuropsychologist Warrick J. Brewer of Orygen Youth Health, a mental-health-research facility in Parkville, Australia, and his coworkers studied 81 teenagers and young adults considered at high risk for developing schizophrenia because they showed mild paranoia and other psychotic symptoms. The team also tested 31 young people with no psychiatric symptoms. Each volunteer tried to match a series of scratch-and-sniff smells.
The dozen high-risk participants who developed schizophrenia during the next 18 months had performed poorly on the odor test, Brewer's group reports in the October American Journal of Psychiatry. The rest of the volunteers, including high-risk individuals who later developed other psychotic conditions, had had a much keener nose for smells.
The scientists theorize that schizophrenia, in its beginning stages, compromises the functioning of the brains's frontal lobe, which contains tissue active in sensing smells.
From Science News, October 11th, 2003
Smoking and Depression
According to one estimate, people with psychiatric disorders smoke half of all cigarettes consumed in the United States, and depression is their most common problem. As many as 30% of smokers show some symptoms of depression. About 70% of men and 80% of women with a history of major depression are, or have been, habitual smokers.
Depressed nicotine addicts have a particularly hard time abandoning the habit. The Epidemiologic Catchment Area survey found that only 33% of smokers with a history of depression succeed in quitting, compared to 50% of those with no psychiatric diagnosis.
A common genetic predisposition could partly explain the association between tobacco use and depression. Twin studies suggest that nicotine dependence is highly heritable and runs in the same families as depression. A certain variant of the gene that regulates the activity of the neurotransmitter seratonin apparently raises likelihood of nicotine dependence along with the rate of depression and anxiety disorders.
Another possibility is that depressed people (like those with other psychiatric disorders) smoke to medicate themselves. Nicotine has mild and variable psychological effects. It can be calming or stimulating for different people and in different circumstances. But, like antidepressant drugs, it alters the regulation of the neurotransmitters norepinephrine and serotonin, and it may have some antidepressant powers of its own.
A third possibility is that smoking causes the depression and anxiety for which it appears to be the treatment. As in all addictions, the brain eventually becomes adapted to the presence of the drug and no longer functions normally without it.
Without a controlled study, no one can be sure whether nicotine dependence causes depression and anxiety or the other way around. Even smoking that begins before a psychiatric diagnosis could be a response to subtle early symptoms.
About 90% of people with schizophrenia are nicotine addicts, and usually they begin smoking before they are diagnosed. They are almost certainly trying to medicate themselves. The relationship between smoking and depression, on the other hand, could be a self-reinforcing cycle.
The relationship between nicotine dependence and depression demands more study. Drugs acting more selectively at some of the nicotine receptors might be useful in the treatment of depression. In the future, brain scans may help to distinguish individual responses to nicotine and to antidepressant treatment for nicotine addiction. Genetics may have something to contribute as well.
Condensed from Harvard Mental Health Letter, August, 2002.
Problems Caused By Drug-Induced Weight Gain
Although antipsychotic pharmacotherapy is an important component of treatment for most people with schizophrenia, most antipsychotics are associated with weight gain. The atypical agents, with the exception of Geodon, are especially problematic. In addition to the deleterious effects of obesity on general health, weight gain may also cause significant interference with medication compliance. One of the most frequent reasons patients offer for medication non-compliance is weight gain and this is considered to be an extremely distressing side effect.
A study was undertaken to assess the association between weight gain and quality of life among persons with schizophrenia. A total of 1,527 questionnaires were sent to 203 NAMI and NMHA chapters across the United States for distribution to their members who had schizophrenia. 304 surveys were returned.
About half of the sample (44%) reported gaining weight in the previous six months; 42% gained less than 10 pounds, 27% gained 11-20 pounds and 31% gained more than 20 pounds. Weight gain was associated with perceptions of poorer quality of life, general health and vitality. These associations were of a fairly large magnitude; study participants who gained more than 20 pounds had quality-of-life scores that were 12% lower, general health scores that were 19% lower and vitality scores that were 32% lower than those participants who did not gain weight.
Despite limitations of the study, this research has important implications. First, the results should alert health care providers to attend to weight gain and consider the weight gain effects of various drugs. Second, the results underscore the deleterious effects of weight gain among persons with schizophrenia, even among those who do not become obese. Such effects suggest the need for research evaluating methods for preventing and treating weight gain in this population. Given that weight gain and obesity increase the risk of many physical ailments, it may be that impaired physical health leads to the decrements in subjective well-being that were observed in this study.
Condensed from Psychiatric Services, April 2003
Rick Crispino Explains Bonita House Programs
Rick Crispino, Executive Director of Bonita House, Inc., was guest speaker at the FAMI educational meeting on May 8. He discussed the various programs offered by Bonita House for the treatment of individuals who have co-occurring disorders - that is, a major psychiatric disorder plus a substance abuse disorder.
It is estimated that about 60% of individuals in the public mental health system have co-occurring disorders - formerly referred to as dual diagnosis. In the past, the two disorders were treated separately. If a person who came into a mental health clinic started to show that he had substance abuse problems, he would be told to go to a substance abuse program. Conversely, if a person who was taking psychiatric medication showed up at a substance abuse program, he would be referred to a mental health clinic. Neither the classical drug and alcohol programs nor the mental health system, operating independently of one another, knew how to meet the needs of this population.
That is changing now and treatment is being provided. Programs offered by Horizon Services, East Bay Recovery Program, John George Pavilion, Villa Fairmont and Telecare have components which deal with the problems experienced by clients with co-occurring disorders. In addition, Bonita House in Berkeley was converted in 1991 from a psychiatric residential program to one which exclusively serves people with co-occurring disorders.
Bonita House, Inc. now consists of three components; the Residential Treatment Program, the Supported Independent Living program and the Creative Living Center. The oldest facility is the Residential Treatment Program in North Berkeley. The house can accommodate 15 residents plus a 24 hour staff. The average length of stay is four to five months. Included in the program are a highly-structured in-house day program, evening groups, 12-step meetings, a variety of community involvement activities and assistance in transitioning to more self-sufficient living. It is expected that residents will remain "well, clean and sober". Efforts are also made to see that the client is on the right medication at the right dosage.
People come voluntarily to Bonita House either directly from psychiatric hospitals or other community support services. There is a long waiting list. Those who are admitted have to have a history of going in and out of inpatient facilities. Because it is an expensive program to operate, priority is given to those clients who have cost the county a great deal of money from use of inpatient services.
If the clients don't have a case manager when they come, they will be assigned to Bonita House's case management unit which is part of the Supported Independent Living (SIL) program. The case management unit is staffed by five case managers, a psychiatrist and a program director. It serves about 160 people in the community who have co-occurring disorders.
In addition to case management services, the SIL operates a transitional housing unit which serves as a bridge between the highly structured Residential Treatment Program and independent living. There is no staff on site but they come by to help facilitate house meetings and are available 24/7 if necessary. Each resident has his own bedroom.
There is also permanent supported housing at two sites where residents live in individual apartments. Staff is available by telephone 24/7. Residents may stay in this housing indefinitely. These are Section 8 and Shelter Plus Care funded facilities which means that the individual is expected to make a co-payment of 30% of his adjusted income. Residents in both types of housing receive support and guidance from service teams and can continue to receive such services even if they go on to their own living arrangements.
The SIL program is based in its office on Telegraph Ave. where it also conducts several types of groups such as NA and DRA (dual recovery anonymous, which is a slight modification of the standard AA program). Bonita House tries to keep abreast of new approaches in working with people with co-occurring disorders. Recent additions are groups based on Dialectical Behavioral Theory (DBT) and groups on smoking cessation and "Seeking Safety". DBT is a model which combines elements of psychodynamic therapy, cognitive behavioral therapy and Eastern meditation practices. It teaches clients how to regulate their emotions and it has become a very popular group.
The smoking cessation group started only five months ago, so its effectiveness is not yet clear. The participants can develop a plan for quitting cigarettes and maintaining their resolve and can get assistance from nicotine patches and gum. Funding for this group comes from the "tobacco settlement" which was a landmark lawsuit brought five years ago against tobacco companies. This money allows the program to offer incentives to stop smoking such as a month's membership at the YMCA gym or restaurant meals.
"Seeking Safety" is an approach in which people who have suffered traumatic experiences, such as physical or sexual abuse, can learn to deal with the emotions that come up and not let those emotions rule their lives.
There is also a family education group open to family members of anybody who is receiving services from Bonita House. It has been designed for those family members who do not know how to deal with their loved ones' co-occurring disorders.
The third component of the Bonita House program is the Berkeley Creative Living Center which is a two day per week socialization program open to anyone with a history of mental illness. It offers counseling, case management and supportive activities for people who are living in the community but have a difficult time interacting with others. Many people see this as a safe place to come to. The program serves about 175 individuals per year, but unfortunately it is targeted to be closed as one of the County budget cuts.
We wish to thank Mr. Crispino for his informative presentation.
From July 2003 Families Advocate
BACS Mental Health Programs Described by Liz Prince
Liz Prince, Executive Director of Bay Area Community Services (BACS), was guest speaker at the FAMI educational meeting on June 12. She described the many services provided both to older adults and to people with mental illness.
BACS was started in 1953 to provide services to mentally ill people in Alameda County; services for older adults were added a few years later. Older adult services include Adult Day Care and Adult Day Health, Case Management, Money Management and Meals on Wheels. Services for mentally ill people include the Crisis Residential Program, Case Management, Supported Independent Living, Creative Living Centers and an Employment Program. All of the BACS programs are voluntary and they serve about 950 Alameda County residents per year.
Mental Health Programs: Woodroe Place in Hayward is a Crisis Residential Program which is designed to be a step down from hospitalization. People can come there directly from the hospital in order to complete their stabilization. It has 12 beds and is staffed 24 hours. These residents have their medications monitored, learn more about the activities of daily living, attend groups, etc. The majority of referrals come from John George and other hospitals in the area, but case managers can also take someone there if the person is having difficulties and is headed for hospitalization. The average length of stay is two weeks, and because the turnover is so high, there is not a long waiting list. Usually after a referral is made, the person is in the program within two to four days. When people leave Woodroe Place they generally return to the living situation they were in before or they might go to another residential program such as Bonita House or Casa de la Vida.
The BACS Mission Statement is "to improve the quality of life for people of our community who have specific needs imposed by age or disability by providing quality services". In keeping with this mission, BACS has developed Creative Living Centers (CLC) at five locations throughout the county in Oakland, Hayward, Alameda, Fremont and Pleasanton. These are daytime programs and are organized according to the clubhouse model. This model features socialization plus other activities carried out by three groups: house and grounds, creative services and food services. Everybody who comes has a role in the program and can choose whatever activity it is that fits his needs and interests.
There is a wide range of ages among members of the CLCs. There is also a wide range of severity of illness. People are not segregated according to where they are in the phase of their illness. There is a lot of peer support in the program and the CLCs are open to anyone with a history of mental illness.
BACS has its own Employment Program, started in 1998 through a grant from the State Department of Rehabilitation. The program is not as big as it used to be, due to a variety of reasons - the main one being funding. A person must be a member of a BACS program in order to take advantage of the Employment Program. If that is his/her goal, the CLC will help him/her achieve it in a manner consistent with retaining SSI benefits.
The Supported Independent Living Program (SIL) offers housing for 50 individuals. They live in apartments or houses scattered throughout the county in Castro Valley, Hayward, Livermore, Oakland, Pleasanton and Union City. Everybody has his/her own bedroom but it is a shared living situation. There is no staff on site but BACS case managers come in periodically to hold house meetings and to offer individual counseling as frequently as needed. Every effort is made to help people learn what they need to do to be independent. The aim is to move people out of SIL and into their own housing where they will continue to receive case management services. People do have to be compliant with their medications and they do have to demonstrate a certain amount of independent living skills. There are current openings and those interested in the SIL program can call BACS at 510-272-4797.
BACS has one Case Management service team under contract with the county which also takes care of people in SIL. The team consists of six case managers and takes care of 180 clients. The county has 16 different service teams. It is the function of the team to keep track of the client and do whatever it can to help him stay in the community. The team assists with such things as housing, medical appointments, government benefits, the client's goals, etc. The case managers will meet with clients as frequently as is necessary. That can be anywhere from a couple of times a week to every other month, depending on how the person is doing.
Case management is one of those services in which the need is greater than the availability of the service; not everyone who wants a service team can get one. Alameda County Behavioral Health Care Services has a priority system for admitting case management clients. The way to hook up with case management or any other county service is through ACCESS at 800-491-9099.
BACS welcomes volunteers in either the Older Adult or the Mental Health program. Anyone interested in volunteering can call 510-613-0330.
We wish to thank Ms. Prince for her informative presentation.
Varieties of Schizophrenia
Researchers at the University of Pennsylvania have developed a new classification of patients with schizophrenia based on memory disturbances and certain brain features. Researchers tested patients with schizophrenia and controls for the ability to learn and remember. All subjects were also given MRI (magnetic resonance imaging) scans to observe brain structure and positron emission tomography (PET) scans to measure brain blood flow and energy consumption.
It turned out that the 245 patients could be divided into three groups. The first, including about 20% of the patients, consisted mostly of young men who developed schizophrenia early in life. Their symptoms included poor attention, disorganized thinking, and incoherent speech. Their memory deficits resembled Alzheimer's disease in some ways - poor recall, many false memories, and poor recognition memory. Yet they did not have particularly serious delusions or negative symptoms (apathy, emotional unresponsiveness). The temporal lobes of the cerebral cortex and the hippocampus, centers of emotion and memory, were smaller and less active than average. The authors call this the cortical type of schizophrenia.
A second group, which they call the subcortical type, comprised about a third of the patients. They also suffered from limited speech, poor attention, and disordered thinking, but their memory problems resembled Huntington's disease more than Alzheimer's - less memory loss overall, fewer false memories, and better recognition memory. However, this group had the most serious symptoms, both positive (delusions and hallucinations) and negative. Surprisingly, their brain activity, as measured by PET scans, seemed no different from that of normal controls. But their MRI scans revealed thinning in the gray matter of the frontal cortex, which governs planning, judgment, and initiative. Their temporal lobes looked relatively normal.
The third group, comprising 50% of the patients with schizophrenia, had only mild memory problems. Their symptoms and brain abnormalities were a mix of milder forms of the features found in the other two groups. Yet they had more enlargement of the brain's fluid-filled cavities, the ventricles (suggesting general atrophy of brain tissue), than the cortical group and more tissue loss in the temporal lobes than the subcortical group. This suggests to the authors that their classification represents real differences of kind and of origin, rather than just differences in the severity of schizophrenia symptoms.
Condensed from Neuropsychology, October, 2002.
From the September 2003 Families Advocate
City living and schizophrenia
For almost 75 years, epidemiologists have known that urban populations have higher rates of schizophrenia than rural ones, though it is not clear why. The migration of people with schizophrenia to cities explains a small part of this association. But being born in an urban center seems to raise the risk more than residing in one. And the association is becoming stronger -the effect of urban birth is greater in more recent birth years.
Obstetric complications, such as fetal malnutrition and problems with the fetal blood supply to the brain, are known risk factors for schizophrenia, so researchers have wondered whether such complications are more prevalent in cities than in rural areas. At least one study disproves this idea. A stronger but still unproven theory lays the blame on fetal viral infections, which may spread more easily when population density is higher. All in all, city living is a small risk factor when compared to family history (for example, a parent with schizophrenia). Most professionals believe that schizophrenia results from a genetic vulnerability combined with environmental influences. Being born in a city apparently increases those environmental risks slightly in ways that are still poorly understood.
From Harvard Mental Health Letter, July, 2003.
Michael Stortz Discusses Medi-Cal Entitlement Programs
Michael Stortz, Staff Attorney, Protection and Advocacy, Inc. (PAI) was guest speaker at the FAMI educational meeting on July 10. He spoke about the services that by law should be available to Medi-Cal beneficiaries and how PAI can assist such individuals to receive services they are entitled to.
PAI is a federally mandated and federally funded organization that serves people with disabilities and deals with problems involving the law. Many of the issues are about the denial of rights.
Among such issues is that of securing access to services that are supposed to be available to Medi-Cal beneficiaries. The list of services is impressive and includes adult residential treatment, crisis intervention, crisis residential, rehabilitation, targeted case management, etc.
There has to be a 24/7 toll-free phone number for the county health department to give out information about how to access services or file complaints or go to a state fair hearing, and that phone line has to supply the information in the language of the people in the community. The county has to have a listing of all services available for folks in their primary language and by location of services. (The number for Alameda County Mental Health ACCESS is 1-800-491-9099-editor's note)
Adult Residential Treatment: The facilities which offer this program are basically transitional residential programs where a person can stay for up to 18 months and work on learning independent living skills. It provides more intensive mental health assistance than a board and care home and there is staff present 24 hours a day, 7 days a week. The facility is not locked; people have the freedom to come and go. In Alameda County, Bonita House (510-526-2887) and Casa de la Vida (510-839-3769) would qualify as adult residential facilities.
Crisis Intervention: This service is provided in a situation where there is a serious threat to the health or stability of the person or the family. The interview is conducted at home or wherever the person is. Often this service is provided as an alternative to calling the police. (Both Alameda County and the City of Berkeley operate mobile crisis teams who interview the person in crisis on a voluntary or involuntary basis. The number for the Alameda County Crisis Response Program is 510-268-7836. The number for Berkeley Mobile Team is 510-981-5254. Sausal Creek in Oakland provides crisis intervention on a voluntary basis and is equipped to keep an individual for up to 23 hours and 59 minutes. Their number is 510-437-2363-editor's note)
Crisis Residential: This program is a step down from hospitalization. It provides intensive support and is focused on resolving a crisis in a residential setting. It has to accomodate 15 or fewer people, and generally there are 10-12 people there for an average stay of two weeks. It is staffed 24/7. In Alameda County, Woodroe Place in Hayward is designated as a crisis residential and referrals generally come from John George Psychiatric Pavilion (510-481-4141) or from an individual's case manager. (Also the new short-stay rehabilitation unit at Gladman can keep a person for an average length of stay of 14-21 days on a voluntary basis-referrals come from John George and Sausal Creek (510-437-2363)-editor's note)
Rehabilitation: This is a service which involves providing assistance in improving a person's independent living skills, functional skills, social and leisure skills, grooming, hygiene, meal preparation, medication education, etc. Provision of services is based on psychosocial rehabilitation and builds on the strengths and interests of the individual. The service is designed to be provided at home or in the community, not in the office of a case worker or therapist. This kind of assistance need not be provided by a professional; it could be provided by any experienced person under the supervision of a licensed professional, generally a psychiatrist or psychologist. In Alameda County, STRIDES and some of the more intensive case management programs fill this role, but the need for this kind of assistance exceeds the availability.
The adoption of Targeted Case Management brokerage in 1989 was designed to help Medi-Cal beneficiaries link up with other needed services. Areas covered by targeted case management brokerage may include communication and referral to other services, monitoring the beneficiary's progress, and plan development.
There are certain criteria that must be met in order for a Medi-Cal beneficiary to be eligable for case management as well as for other covered services. The person must have a covered diagnosis; he must have significant impairment now or the probability of significant impairment in the future; and the service being sought should address the impairment. These are the criteria that determine medical necessity. If the person who is seeking services meets the medical necessity criteria but is denied services, then there are appeal processes and PAI will represent him/her in a Medi-Cal fair hearing to get that assistance.
There has been a general understanding among mental health clients and their families in Alameda County that in order to be eligible for case management services, the person must have cost the county at least $20,000 for recent services usually including hospital costs. Legally this is not acceptable and the county denies that it uses any such criteria. However, it is true that not everyone who wants a case manager and is eligible for that service can get one. The problem is that the county does not have resources to provide medically necessary services to all beneficiaries of Medi-Cal.
The Medi-Cal program in California works under what's called managed care. In exchange for the state turning over authority and the funds it was spending, county mental health departments assumed the financial risk of providing assistance to all Medi-Cal beneficiaries. Each year the state supplies a fixed amount of money, which can be matched by the federal government, to the county. However, because the county has assumed the risk of providing assistance beyond the money it gets from the state, it must be frugal about how it finances the programs which Medi-Cal beneficiaries have a right to participate in.
PAI assists in situations presented by clients or family members. Mr. Stortz can be reached at 510-430-8033. PAI also has an extensive publication list which can be obtained at www.pai-ca.org. The local PAI office is located in Oakland at 433 Hegenberger Rd., Suite 220.
We wish to thank Mr. Stortz for his informative presentation.
From the October 2003 Families Advocate
Website Helps People Find Medication Assistance Programs
PhRMA (the Pharmaceutical Research and Manufacturers of America) and its member companies offer Patient Assistance Programs to ensure that their medicines are made available to those who can't afford to purchase them. HelpingPatients.org is an interactive website that helps patients find assistance programs for which they may qualify. The site includes member company programs, non-PhRMA company programs, and federal and state-sponsored programs. The online service is free and completely confidential. For the most current information, please check the website www.HelpingPatients.org.
