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Hardest experience of your life Finding out your loved one has a mental illness is a staggering experience. This is a time when you may, not realizing that mental illness is a biological disease, unfairly blame yourself. Meanwhile, great demands will be made of you. You have been plunged into a whole new world without a compass, and you may very well have to be the guide. Overnight, you must become skilled at how to access services, navigate the system and deal with your and your loved ones' emotions. The good news: Help is available. The National Alliance for the Mentally Ill, (NAMI), a national organization with 20 affiliates in New York City alone and more throughout the state, was created by and for the parents of the mentally ill and their loved ones. This brochure is intended to help your family during its earliest mental health crisis. What
the mental health system can do What can you get from the system? With your loved one's consent, you have a right to:
In cases where your loved one is not capable/competent to decide for him/herself, it is advisable to gain guardianship authority for treatment decisions. New York State Office of Mental Health guidelines governing inpatient rights state: "Generally no information about you (the patient) may be given out unless you or your legal representative give written permission." However, in extenuating circumstances such as a psychotic episode, sound judgment dictates. This is no time to rigidly bar communication with families. Get entitlements for your loved ones They will need supplemental income and health coverage if their mental illness is preventing them from working. The patient may file for Supplemental Security Insurance or Disability Insurance, as well as Medicaid or Medicare coverage. To find out what the patient qualifies for, call the Advocacy Counseling and Entitlement Services (ACES) at 212-614-5552. Or go to your local Social Security Office to apply. To reach Medicaid, call 718-291-1900. Reach Social Security at 800-772-1213. Be prepared for tedious bureaucracy, but it's well worth the essential services for you and your family, which otherwise would not be affordable in the long term. How can you access the system? Through NAMI-NYC Metro (the National Alliance for the Mentally Ill NYC affiliate at 212-684-3365) you can find out about information meetings, support and advocacy. The first line of defense is the Helpline 212-684-3264 11 a.m. to 4 p.m. Monday to Friday where an experienced volunteer will answer questions. This website is another—check for frequent updates or sign up for advocacy alerts. NAMI's support meetings offer counsel, networking and an opportunity to discuss issues you are grappling with. Other resources on this website are at NAMI's informational meetings allow you to hear from the top professionals in agencies that assist with emergency services, discharge planning, entitlements, estate planning, housing and legal services—hard-to-find information and counsel. NAMI's advocacy program allows you to have your voice heard with legislators and directly improve the opportunities for your loved one. TARA, a national association devoted to personality disorders, has pioneered raising public awareness about this least understood illness. Its hotline, workshops, educational seminars, symposia, teen groups, advocacy and referral service, provide all-round support to families. TARA performs the valuable service of raising awareness about personality disorder with legislators, mental health systems and policymakers and advocating for its appropriate treatment and parity with other disorders. You may find your loved one may have one of the personality disorders as a second diagnosis, so it's crucial to both understand and be on the lookout for it, as it can be overlooked by clinicians. Contact 888-4-TARA APD. The New York State Office of Mental Health establishes guidelines for licensure of mental health care facilities. From its website, you can find out requirements for licensure governing the operation of residential programs for adults. One of OMHÕs standards for licensing psychiatric facilities is family and support networks. Complaints? Call the OMH Customer Relations Department at 800-597-8481. Or write to Office of Mental Health, 44 Holland Avenue, Albany, New York 11229. The OMH is funded by state taxpayer money serves family stakeholders. The Commission on Quality of Care is an independent state agency that acts as a watchdog over services for persons with disabilities. If you have a complaint about a mental health care facility (inpatient or outpatient), you can call them, and they will investigate: 800-624-4143. Another New York resource: 800-LIFENET is a crisis information and referral network for people with emotional and substance abuse problems run by the New York City Department of Mental Health (Mental Retardation and Alcohol Services). A referral specialist will assess the situation and give referrals based on a database of private and public community resources. How to succeed with mental health professionals Show them you are informed and cooperative.
Be aware of the specific part of the OMH Official Policy Manual and mental hygiene law that substantiates your rights. By law, families must "have full opportunity to participate as informed and indispensable partners with mental health providers in the treatment and rehabilitation of their family member" (OMH Official Policy Manual PC-1050, reinforced by Section 29.13 of the Mental Hygiene Law, requiring facilities to involve families in the development of the treatment plan and any revisions, with the patient's consent. To some degree you will get the treatment and services you insist on. This requires that you know what they are and keep careful documentation in the case of defaults. Educate yourself Research shows consistently positive treatment outcomes for the family and their loved one receiving nine months of psychoeducation (22 controlled studies since 1980). We're talking about reducing readmission to hospitals by more than half, reducing social disability, increasing patient employment (by 60% when a vocational component is included), lightening the burdens of care-giving and improving families' overall health. More about psychoeducation: the need | the benefits | the PORT study. Since the more relapses your loved one has, the harder it is for recovery, reducing the number of rehospitalizations is crucial. Collaborative and participatory decision making for patient, family and clinician at every stage of the illness is critical. All of these benefits depend on families and their loved ones getting psychoeducation from the moment of first hospitalization. The Office of Mental Health Official Policy Manual (OMHPC-1O5O), authorizes hospitals to "develop educational and training opportunities to foster the philosophy and practice of families as partners in treatment" and each "facility must provide for an ongoing support program to serve as followup to the initial orientation program." (Complain to OMH Customer Relations: 800-597-8481, if they don't.) The Joint Commission for Accreditation of Healthcare Organization's (JCAHO) (PF 6-9), stipulates that facilities' written plans must include "programs, written materials for families and family support programs to provide educational and informational opportunities to families in treatment." (Call JCAHO's Office of Quality Monitoring 800-994-6610, if they don't). These two bodies have power of licensure and accreditation without which hospitals and providers can't operate. Early on is the time to use your advocacy power and fight for this benefit so crucial for you and your loved ones' future life. NAMI offers a highly acclaimed, 12-week family education course, Family-to-Family, providing support, practical information and opportunity to learn how other families cope after crisis. It's available from affiliates across the country (find out at NAMI NYC's Helpline at 212-684-3264. Outside New York, call NAMI-NY State at 800-950-3228). Demystifying medication The mentally ill have a biological disorder or chemical imbalance. Medication will remit, reduce or eliminate the symptoms. Medications stabilize the way in which your loved one experiences the world. They may also enable him or her to make use of other clinical interventions such as therapy. Medication compliance is the key to your loved one's recovery process. Although medications don't cure, they reduce symptoms, enabling your loved one to use treatment and achieve some degree of recovery. Be prepared—it can take from three to six months for medications to stabilize the individual, depending on how it interacts with individual chemistry and other medications. Medications must be introduced slowly and watched closely. The family must be informed of side effects to monitor. If your loved one won't take the medication Severe lack of awareness is part of the disorder. Psychologist Xavier Amador, who has studied this phenomenon, counsels to "externalize the illness by Listening, Emphasizing, Agreeing and finding Partnership (the LEAP approach). LEAP is a way of connecting and getting out of the battle... to find a common ground to allow an ill person to find his own reasons for being compliant. You can't use logic and expect insight when someone is delusional—the brain dysfunction is the enemy, not the patient." Dr. Amador's book I am Not Sick, I Don't Need Help (Vida Press) addresses this problem. If a loved one is a family member over 18 who won't take medications, has been hospitalized two or more times in the past three years and may be at risk of being dangerous to himself or others, then you might consider petitioning for Assisted Outpatient Treatment (AOT). This is meant to be a last resort, when nothing else will work. Call you local mental health department, ask for the person responsible for the AOT program, and tell that person you would like to file a petition under Kendra's Law. It requires investigation of the condition and situation of the person you are concerned about in a timely fashion. Under Kendra's Law, a court is able to assign a PACT team or case manager to assist people in getting treatment whether or not they want such assistance. Often after the case is investigated, agreements can be made and services provided to keep the ill person out of danger without going to court. Petitions are most easily filed while your loved one is in the hospital. You may ask the hospital for a petition to be implemented before discharge. Negative and positive symptoms and how to treat them It's important for families to understand the difference between negative and positive symptoms.
Discharge planning—the key to the future Discharge planning begins on the day of admission to the hospital when discussions regarding housing placement and aftercare should begin. It takes focus, motivation and time to design and implement an appropriate discharge plan, so this must receive top priority. This can be difficult if your loved one is not stable and not able to participate in discussions. However, if s/he has been living at home or independently and if you feel the person needs a supervised living situation, you should tell the staff immediately. This way, they can begin the housing application process, which starts with completion of the HRA 1995 form. Family involvement in planning is crucial because the different types of housing available. Do the research. The resource to find out about types of housing and openings is www.cucs.org. Exercise your rights to a complete discharge planning process (analysis of needs, medication, aftercare services, assistance in finding employment, identification of residence, listing of resource services and evaluation of eligibility for public benefits) by invoking Mental Hygiene Law Section 29.15 and the OMH Official Policy Manual PC-400. If you feel the hospital is planning an inadequate discharge, call the Urban Justice Center's Discharge Planning and Advocacy Service which advocates for patients' rights and can intercede and provide assistance (646-602-5665). The other critical part of discharge is aftercare. If your loved one is unable to work due to the illness, it will be beneficial to attend a structured rehabilitation program. Examples are: Continuing day treatment, psychosocial clubs, Individual Psychiatric Rehabilitation Treatment (IPRT) or vocational programs. Again, research to make sure you are exploring all possible options. Some experts agree that in some cases, living at home creates an atmosphere of unpredictability and tension. Many families feel they are not qualified to give the necessary care. Since there is no one right answer, the question should be asked at the earliest point so there is time to implement alternatives. The discharge plan should be tailor-made for your loved one:
Many families have found a "behavioral contract" signed by the psychiatrist and social worker before a consumer leaves the hospital is invaluable. It spells out for the family and the team formalized boundaries about the family's and the loved one's responsibilities and obligations. How to succeed with your mentally ill loved one Develop a long-range view of the illness. It can take a long time for your loved one to recognize and accept the illness, as it can for you. Direct him or her into activities within reach. In the meantime, work at sustaining patience and hope. Be consistent. It's important. Have a simple, structured environment. Reduce stress and stimuli. Stick to predictable routines. Slow down and quiet down. This is difficult for high-gear people, but a voice that is slow-paced and low-toned and uses short sentences reduces confusion. Learn the pattern of early warning signs and help prevent relapse. A relapse caught in early phases can be prevented. Learn the signals that it is impending and how to subvert it Accentuate the positive. Your loved one is particularly sensitive to comments that attack self-esteem, so avoid critical comments. Help your loved one deal with stress and behaviors by calling time out if your loved one becomes stressed. Leverage penalties and consequences to provide limits on issues such as poor hygiene, arguing and assaultive behavior (focus on one at a time). Help your loved one establish controls. Include your loved one in ways that are not too stimulating. Next to medication noncompliance, the greatest barrier to recovery is lack of involvement with family and community. Promote a sense of belonging, being useful and cared about until your loved one is able to re-establish contacts. Understand how they feel when they are in psychosis and what this state is. They are terrified by their feelings of loss of control over their thoughts and feelings. Some voices they hear are menacing. Accept that they are in an altered state of reality. Stay calm if they act out what the voices tell them. Remember, you can't reason with psychoses. Avoid direct, continuous eye contact or touching the person. Express understanding for what they are feeling. The voices are very real to them. Don't expect too much too fast. When people are recovering from an acute psychotic episode, they need to approach life at their own pace. Don't push too hard. At the same time, don't be too overprotective. Do things with them rather than for them, so they can regain a sense of self-confidence. Tend to your life. Get back to normal routines after the initial crisis subsides. Protections and opportunities Whatever supports and resources exist for you exist also for your loved one. NAMI offers an experiential learning program called Peer-to-Peer and a peer-based support group called NAMI CARE for those in recovery. City Voices sponsors peer-based groups in most of the five boroughs, called Awakenings. This is the time for the whole family to subscribe to the newspaper, City Voices. Contact Dan Frey (212-982-5233) for news, first-person stories and provocative and informative columns. Mental Health News is winning serious attention for its in-depth and readable reportage on mental health issues (contact Ira H. Minot, 914-948-6699). NAMI national and affiliates and publications keep you abreast of the activities of this largest grass roots organization for families and consumers. There are web links for both of you:
Don't forget nami.org where you can search for the websites of affiliates (for example the Syracuse affiliate on its "e-help" page has excellent tips and strategies. As strong as the family movement is, also empowering is the consumer (most recent term for those suffering from mental illness) movement. The New York Association of Psychiatric Rehabilitation Services (NYAPRS) serves the cause of mental health recovery and rehabilitation through advocacy and program initiatives (518 436-0008). The National Mental Health Consumers' Self-Help Clearinghouse is a consumer-run national technical assistance center. Many discussion boards are available through the National Mental Health Association and Alice Cohen's friendshipnetwork.org. Other links here. Take heart that as your loved stabilizes, organizations are in place for strong representation and that his or her voice can make an impact on the mental health agenda in this country. Be aware of how your loved one is protected by law. The Americans with Disabilities Act helps protect workers with mental illness from employment discrimination, and under the Human Rights Law, mental illness cannot be used as a reason to discriminate against an individual who is or wants to rent or buy property. Should your loved one be arrested, the Urban Justice Center's Mental Health Project's handbook, When a person with mental illness is arrested: How to Help guides family members toward appropriate psychiatric care while in jail and to work with the defense attorney to advocate for the disposition of the case in a way that will lead to treatment, not incarceration. Contact Heather Barr, Urban Justice Center, hbarr@urbanjustice.org or 646-602-5600. Look after yourself and your family Families go through a series of reactions to the diagnosis of mental illness: 1. Shock and
denial (resistance, rationalization and assigning blame) This is the same process any of us go through with the diagnosis of a chronic medical illness. Find strength in the fact that because of research, medications for persons with mental illness have made major strides in the last decade. Medications are more effective with fewer side effects and promise to advance more in the next decade. Because of organizaitons like NAMI and TARA, there has never been more support and less blame for families. Increasingly, stigma against mental illness is being brought to public attention for the unfair byproduct it is and awareness that schizophrenia, bipolar and personality disorder are treatable as neurobiological brain disorders. More individuals suffering from mental illness have come out and been able to establish exemplary and productive lives. According to a recent Surgeon General's report, one out of five suffer from mental illness in any given year. You are not alone. ••• From Families
and Consumers for Psychoeducation, 345 East 57th St. New York, NY.
10022-2952 Judith Carrington,
Director This is a work in progress for and by families. Your feedback is appreciated. Originally written for New York City area residents, the information is applicable throughout New York state. Please consult your local NAMI-NYS affiliate to obtain relevant addresses and phone numbers. This document available in pdf form for printout or sending via e-mail. You will need a pdf file reader to access it. Download one free of charge at http://www.adobe.com/products/acrobat/readstep2.html Return to the advocacy page
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Phone 212.684.3365 | Fax 212.684.3364 | Helpline 212.684.3264 505 8th Avenue, Suite 1103, New York, NY 10018 |
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