The
Peer/Self-Advocacy
Training Manual

ACKNOWLEDGMENTS

Written and Compiled by Jean Matulis, Attorney, CNMHC Member.

Special contributions from Tanya Temkin, Lori Shepherd and Jenny Miller.

Reviewed and edited by Carolyn Schneider, Managing Attorney, Disability Rights California; Lori Shepherd, Director, Peer and Self-Advocacy Program; and Janet Marshall Wilson, Trainer, Peer and Self-Advocacy Program.

Final edit and word processing of 1st and 2nd editions by Nancy Thomas, CNMHC Member; Final edit and word processing of 3rd and 4th editions by Ruth Ordas, Disability Rights California.

1988 by Disability Rights California. - Sixth Edition - 1997

Produced

by the California Network of Mental Health Clients Under a Contract With Disability Rights California.

TABLE OF CONTENTS

Chapter 1. Introduction
Chapter 2. Overview of Related Systems
Chapter 3. Rights in Inpatient Facilities
Chapter 4. Due Process Rights
Chapter 5. Advocacy For Clients in Residential (Board And Care) Homes
Chapter 6. Entitlement Rights: Social Security
Chapter 7. Learning to Assert Our Rights
Chapter 8. Role of The Peer Advocate in Teaching Self-advocacy Skills
Chapter 9. Providing Patients' Rights Presentations

CHAPTER 1

INTRODUCTION

TABLE OF CONTENTS

A. Our Responsibilities to Our Clients

B. The Unique Experience of Being a Client Advocate, by Jean Matulis

C. Lori's Story: Leaving the Looney Bin, Learning the Law, Passing It On, Changing the System

CHAPTER 2

OVERVIEW OF RELATED SYSTEM

TABLE OF CONTENTS

A. Coordination with Local Advocates 10

B. California Patients' Rights Advocacy System 10

C. Levels of Advocacy 14

D. Local Patients' Rights Advocate 15

E. Local Mental Health Directors 16

F. Health Facilities Licensing 18

G. Community Care Licensing 18

H. What is an Ombudsman?18

I. Local Mental Health Board 19

J. Disability Rights California 21

K. California Mental Health Planning Council 25

CHAPTER 3

RIGHTS IN INPATIENT FACILITIES

TABLE OF CONTENTS

A. Undeniable Rights 27

B. "Deniable Rights" and "Good Cause" 28

C. What is "Good Cause"? 29

D. Additional Rights Not Subject to "Denial for Good Cause" 30

E. Complaint Procedure 31

F. Assembly Bill 595 (Bates 1981) 33

G. Medication Rights 34

1. Your Right To Give or Refuse Consent For Psychiatric Medications 34

2. Limitations On The Right To Refuse Medications For People On 72 Hour ( 5150) Holds or 14 Day ( 5250) Holds 37

H. Background On California's Informed Consent Law 39

1. The Rights Of Involuntary Patients With Respect to Psychotropic Medications 39

2. Legal Basis For The Decision 39

3. What The Decision Means? 40

Discussion Questions 43

CHAPTER 4

DUE PROCESS RIGHTS

TABLE OF CONTENTS

A. 72-Hour Hold 44

Application for 72-Hour Hold (Form) 45a

Patient Record of Advisement (Form) 45b

B. 14-Day Hold 46

1. Certification Review Hearings 46

2. Attending the Hearing 46

3. How the Hearing is Conducted 47

4. Writ of Habeas Corpus Hearing 48

C. After the 14-Day Hold 48

Notice of Certification (5250 Form) 48a

Certification Review Hearing (Form) 48b

D. Additional Holds Beyond the 14-Day Certification 49

1. Danger to Self 49

2. Danger to Others 49

3. Gravely Disabled (Conservatorship Proceedings) 50

Writs of Habeas Corpus for Psychiatric Clients

Statutory v. Constitutional Writs 53

Constitutional Writs (Form) 59a

E. What Is Grave Disability? 60

Discussion Questions 62

CHAPTER 5

ADVOCACY FOR CLIENTS IN

RESIDENTIAL (BOARD AND CARE) HOMES

TABLE OF CONTENTS

A. Title 22 of the California Code of Regulations 80000 and 85000 63
1. Personal Rights 64
2. Admission Agreement and Procedures 68
2.1 Admissions Agreement 68
2.2 Admissions Procedures 69
3. Eviction Procedures 69
4. Needs and Services Plan 71
4.1 Modifications to the Needs and Services Plan 72
5. Resident Councils 74
B. What Can Be Done When a Resident's Rights Are Violated? 74
C. Assistance From Advocates 75
D. Community Care Licensing 75
1. Placing a Call to Community Care Licensing 75
2. Assistance From Ombudsmen 77
3. General Legal Assistance 77
E. Unlicensed Boarding Houses 77
Discussion Questions 78

CHAPTER 6

ENTITLEMENT RIGHTS: SOCIAL SECURITY

TABLE OF CONTENTS

A. Social Security Disability and SSI: In General 80

B. Other Features of the SSI and SSDI Programs (Comparison) 81

C. More About Income and Resources for SSI 83

D. How Much SSDI or SSI Can You Get? 84

E. What Does "Disability" Mean? 84

F. Dealing With the Social Security Office 88

G. De-Mystifying SSA: Who Does What To Whom 90

H. What to Bring to the SSA Office When You Apply 94
1. Non-disability Information 94
2. Disability-related Information 95
3. Work-Related Information 96
4. Educational Information 96

I. How the Advocate and Claimant Can Work Together? 97

J. When the Claim is Approved ... 100

K. More About Representative Payees ... 102

L. Appeal Rights: A Very Brief Outline 103
1. Reconsideration 104
2. Hearing 104
3. Appeals Council 105

Discussion Questions 106

CHAPTER 7

LEARNING TO ASSERT OUR RIGHTS

TABLE OF CONTENTS

A. Assertiveness, Aggressiveness and Passiveness Defined 108

B. Examples 109

C. Obstacles to Becoming Assertive 111

D. Description of Self Advocacy 113

CHAPTER 8

ROLE OF THE PEER ADVOCATE IN TEACHING

SELF-ADVOCACY SKILLS

CHAPTER 9

PROVIDING PATIENTS' RIGHTS PRESENTATIONS

 

CHAPTER 1

INTRODUCTION

The California Network of Mental Health Clients (CNMHC) is a statewide, client-run, mutual and self-help network comprised entirely of people who have had first-hand experience in the mental health system. The goals of the Network are:

To empower clients of the mental health system through self-help groups and statewide networking.

To confront stigmatizing attitudes about mental health clients in the public, the media, the mental health system, and among mental health clients themselves.

To provide a strong voice of, by and for mental health clients, to be heard on all issues concerning clients and public policies affecting them in the government, the media, and the community.

To promote and instill the rights of clients in and out of treatment situations, with special attention to the right to freedom of choice.

To provide every possible reasonable accommodation to enable persons with a psychiatric disability to work.

To provide a range of employment opportunities--from subsidized prevocational training, to on-the-job skills development, to employment comparable to non-disabled individuals in similar positions.

Under a contract from Disability Rights California, CNMHC launched a client-run training program for peer advocates, the Peer and Self-Advocacy (PSA) Program. Public Law 99-319 (the Federal Protection and Advocacy for Mentally Ill Individuals Act of 1986) mandates that each state provide an independent advocacy system for persons labeled "mentally ill." The PSA Program was established to train clients and ex-clients in peer and self-advocacy techniques.

Disability Rights California has hired people internally to continue the PSA work that was started. The program's goals are: to inform clients of their rights; to train clients to exercise their rights, to get what they need and to protect themselves from abuse and neglect in the mental health system; to help clients become more able to negotiate the maze of bureaucracy and ultimately become their own best advocates.

As clients, who have each had personal experiences in the mental health system, we have something unique and special to share with other clients. We know how it feels to be treated as "patients." Our knowledge is not theoretical, but so real that it hurts. We can offer each other encouragement and strength.

A. Our Responsibilities To Our Clients

Here are some of the things we have to offer clients:

Confidentiality

Listening

Information

Expressed Interest

Networking

Training

Support

C Confidentiality. Clients need someone they can trust; someone they can talk to in confidence. We honor the confidentiality of our clients and only share things with others with their permission.

L Listening. A peer advocate needs to be a good listener. Each client is the expert on his or her own experience.

I Information. We owe it to our clients to be informed on the law and on the local policies and practices of our communities. By sharing information and knowledge, we are sharing empowerment.

E Expressed-Interest versus "Best Interest" Advocacy. Many clients have expressed frustration when other people try to assert their ideas of what is, "best" for the client. As advocates, we must listen to what each client feels is in his or her own best interest. We may, from time to time, offer suggestions or ideas that a client has not considered, but, within the bounds of the law, we will respect the expressed desires of each client for whom we advocate.

N Networking. One of the advantages of clients reaching out to other clients is that it puts an end to much of the isolation and sense of being alone that many clients experience. Clients not only have a chance to be heard, but to make new and valuable contacts with other clients.

T Training. As clients, we are able to develop and offer practical training to clients and former clients. In our trainings, we use language we understand and focus on issues which we know are important to clients because we've been there ourselves.

S Support. As clients, we are able to draw from our own resources and tap others, to offer practical assistance to clients. We all can learn from and help each other. All of this amounts to a comprehensive mutual support system which will make a difference in all our lives.


B. The Unique Experience Of Being a Client Advocate

(by Jean Matulis)

Our experiences as former patients enable us to identify with people who are currently going through similar experiences. But sometimes our memories of being in situations can have an effect upon us as we walk on the wards to do our work as advocates.

One time, I was meeting with a charge nurse to discuss the way a certain patient had been treated. This patient had complained that when she was admitted, she was very upset and frightened. She kept begging the staff to just talk to her, but they had processed her quickly and had immediately put her in seclusion. The patient felt that the callous way in which she had been treated had made her more upset, more desperate and more out of control.

As I discussed this matter with the nurse, I noticed that she was unmoved by what the patient had experienced, and that she continued to justify the decision to put the patient in seclusion. As I spoke with her, I began to feel helpless that anything could be done for the patient. I also felt that the staff would very likely continue to treat other patients in this way. Something then happened that any client/advocate would dread; I started to cry. As any well-trained nurse would, this nurse had a box of tissue handy which she promptly offered me. I left the hospital feeling defeated and angry.

Later on at a meeting, this nurse spoke to my supervisor and told her what had happened. She expressed concern that due to my previous experiences, I had a problem with "over identifying" with the patients. When my supervisor returned from the meeting, she laughed about it because, as she said, "Advocates are supposed to identify with the patients!"

At first I was very angry and upset. But the more I thought about it, I realized there was nothing wrong with me because I "over-identify" with the patients. There is something terribly wrong with a system that "under-identifies" with patients! I felt that if admitting staff had been able to identify with that patient and her need to communicate, they would never have turned their backs on her. If they had been able to put themselves in her place, they would never have put her in seclusion.

In retrospect, I am not sorry that I cried. It gave me a chance to see that we have a lot of work to do! Not only must we continue to advocate for all patients/clients, but we really have to work hard at educating people who are in a position of working with patients/clients and changing their attitudes and behaviors.

C. Lori's Story: Leaving the Looney Bin, Learning the Law, Passing It On, Changing the System

For ten years I had been involved in various mental health programs in California. The more "treatment" I received, the more I realized I was losing my identity as an individual and gaining one as a "chronically mentally ill" person. Growing up, I frequently took up causes for human rights. When I unexpectedly found myself in a psychiatric hospital, things were no different. I immediately challenged the rules and the staff's decisions, not knowing that patients were viewed as "sick" and therefore had no status, credibility or input into ward decisions. It took until my eighth admission to a psychiatric institution that I realized what it meant to be a mental patient. To me, it meant a severe loss of personal power and decision making in my own life. I could no longer decide when to get up in the morning, when to go to bed, what or when to eat, or even what to watch on TV. All those decisions were made for me, for my own good.

After that stay, I got deeper and deeper into the mental health system, until I obtained the label "chronically mentally ill," a term I detest to this day. For the next two years I lost my will to fight the bureaucracy and rules that didn't make sense. I ended up in a Board and Care Facility that specialized in behavior modification. There, I was subjected to outrageous acts of human indignity. How many adults have to scrub their bathrooms to earn their first cup of coffee in the morning? I consider having to earn what most people take for granted unconscionable.

I began to question and to assert myself against the tyranny of the staff. When I left, I had begun to take back control of my life. Unfortunately, I still had the label of "chronically mentally ill" and was perceived by the mental health staff as being dependent. Hence, the beginning of a major struggle to see who would control my life. Since leaving the Board and Care Facility, I had begun a life independent of the mental health system. I had a love relationship, plans to return to college to finish my Master's Degree, and a good possibility of a part-time job with the help of vocational rehabilitation. However, what the mental health staff had in mind was an LPS conservatorship, placement in a board and care facility or a locked facility, and my receiving SSI.

During my 14th and last stay on an in-patient unit I learned the value of patients' rights and self advocacy. The staff had decided to place me on an LPS conservatorship, so even though I was a "voluntary" patient, I was not allowed to sign out against medical advice. My family was not allowed to visit me, nor was I allowed to leave the facility on a pass, something that was afforded other voluntary patients.

I requested that I be placed on an involuntary hold so that I could go before a judge to seek my release. I knew I had this right because I had learned about this right during a previous commitment. I was not 5150-able according to a notation in my chart. I was told I was a voluntary patient until they could get the conservatorship papers completed, but I still wasn't allowed to sign out AMA. I felt like I was in a no-man's land. I requested to see the Patients' Rights Advocate, but it was Saturday morning and he was on vacation for the next week and a half to boot. The number printed on the Patients' Rights Handbook had been disconnected with no forwarding phone number, so I was on my own.

I became extremely helpful to the staff by offering to make up beds and pass out medications, and I entertained the other patients to keep them out of the staff members' way. I did absolutely nothing that would give the staff any justification to pursue the LPS conservatorship. I made plans with a friend. If I wasn't released on Monday or placed on an involuntary hold, I would escape by climbing over the fence.

On Monday morning, I approached a staff member and said I had contacted my attorney over the weekend. Either they had to release me, place me on an involuntary hold so I could go to court, or I would take legal action against them for violating my civil rights.

I was released! I left feeling very angry and frustrated about the way I was treated and vowed to do something about it. I remember reading the Mental Health Services Act. I couldn't believe all the laws and regulations in this act that were supposed to protect me and my rights. I kept thinking, "If only I had known about these laws and regulations when I was in the hospital." I have had 14 different admissions to psychiatric facilities in California, and, according to the Welfare and Institutions Code, my rights had been violated on every single incarceration. I was determined not to let it happen again.

I read everything I could about the mental health system. I became involved with the Public Policy Committee of the CNMHC. I wanted to learn everything I could about the system to prevent what had happened to me from happening to other clients. I talked with other clients around the country about the way we were treated by the mental health system and I shared the regulations with people and encouraged them to advocate for themselves.

When the county decided to contract out the patients' rights duties I submitted a joint proposal with a local agency to perform patients' rights advocacy. We got the contract. My patients' rights knowledge came from my personal experiences as a patient in the system and from participating on the CNMHC Public Policy Committee on LPS issues.

As a Patients' Rights Advocate, I wanted to make sure clients knew what their different options were. It was extremely difficult to go back to the very same facilities where I had been treated, as a patient in this new role of Patients' Rights Advocate. I felt at times I was not given the consideration due to a Patients' Rights Advocate and not taken seriously. One of my most Disability Rights Californianful memories was of walking on the in-patient unit and observing some of the same staff members who had put me in restraints put someone else in restraints.

Each time I went on the in-patient unit I was filled with sadness. Why were the only options locked doors and powerful sedating drugs forced on people going through difficult times? I tended to identify with those clients who knew they had problems but didn't see eye-to-eye with the staff as to how to solve them.

Once, when I was discussing with a psychiatrist whether a client met the criteria for an LPS conservatorship, he looked at me and said, "His case is similar to yours. We wanted to put you on a conservatorship for the same reasons." I replied, "You weren't successful with me and you won't be successful with this client." The client was released from the facility voluntarily.

It's situations like these that convince me that for any change to come about in the way clients are treated, clients must start the change process themselves. It is only through clients knowing their rights and how to exercise them effectively that we will create a system where clients are valued for taking responsibility for their lives.

I truly believe from my experiences as a Patients' Rights advocate that only when clients begin to question the system and the way it treats them and begin to assert their rights will the professionals in the mental health system respond. Together we will begin to change it to a more humanistic system and create alternatives that will help people in distress change their lives.

 

CHAPTER 2

OVERVIEW OF RELATED SYSTEMS

In order to be effective as a peer advocate, it is important to be aware of key individuals and agencies that provide services in your community. Part of the service we offer is to make appropriate referrals when necessary. For this reason, it is vital that peer advocates become acquainted with the patients' rights advocate, the local mental health director, the hospital and community care licensing, and the ombudsman. It is also helpful to be knowledgeable about the Mental Health Board, the California Planning Council, Protection and Advocacy, Incorporated, and other local legal resources. (For a directory of local legal resources, see Part 2, Resource Guide.)

A. Coordination With Local Advocates

Local Patients' Rights Advocates (PRA) are required by law to provide advocacy services to people in facilities. One of your duties as Peer Advocates is to refer rights, violations, and complaints of abuse and neglect to your PRA.

It is important that you sit down with your local PRA and work out a plan of how you can work most cooperatively with one another. e.g. When to refer a client to the PRA?

B. California Patients' Rights Advocacy System

The Patients' Rights Advocacy System in California consists of three components:

1. Office of Patients' Rights; (This function is operated by Protection & Advocacy, Inc., under a contract with the State Department of Mental Health.)

2. State Hospital Patients' Rights Advocate;

3. County Patients' Rights Advocacy.

The Office of Patients' Rights is responsible for ensuring that mental health laws, regulations and policies on the rights of recipients of mental health services are observed in state hospitals and in licensed health and community care facilities. (Welfare and Institutions Code (WIC) 5510.)

The major statutory duties which are assigned to the Office of Patients' Rights are contained in WIC 5512, 5513, 5325, 5326.1, 5326.9 and 5326.15. They include:

1. Training for county patients' rights advocates (WIC 5512). WIC 5512 states that the office shall train local county patients' rights advocates in the following areas:

(a) Knowledge of the service system, financial entitlement and service rights of persons receiving mental health care.

(b) Knowledge of patients' rights in institutions and community facilities.

(c) Knowledge of civil commitment statutes and procedures.

(d) Knowledge of state and federal laws affecting recipients of mental health services.

(e) Community organizations, skills to work effectively with service recipients, provider groups and other skills in interviewing and counseling services recipients.

(f) Ability to investigate and assess complaints and screen for legal problems.

(g) Knowledge of and commitment to advocacy ethics and principles.

(h) Knowledge of administrative and judicial codes.

2. Liaison between county patients' rights advocates and State Department of Mental Health. (WIC 5513).

3. To prepare, update and distribute the Patients' Rights Handbook in English and other appropriate languages and to ensure that every voluntary and involuntary patient receives a copy of this handbook at admission. (WIC 5325).

4. To obtain quarterly reports required by electroconvulsive treatment and psychosurgery from each county mental health director and to analyze such reports for investigation where necessary. (WIC 5326.15).

5. To obtain quarterly reports, required by law, of denials of patients' rights from mental health facilities, and to analyze such reports for further review or investigation. (WIC 5326.15).

6. To prepare and monitor the observance of the electroconvulsive treatment and psychosurgery regulations by periodic review of patient records through a random sampling process. (WIC 5326.15).

7. To prepare an annual report for the Legislature on the use of electroconvulsive treatment and psychosurgery; i.e. the number of patients, number of treatments, side effects. (WIC 5326.15).

8. To investigate or refer for investigation by county patients' rights advocates allegations regarding violations of laws on denials or abuses of patients' rights and electroconvulsive treatment and psychosurgery, and to take appropriate action such as requesting a hearing before the Board of Medical Quality Assurance. (WIC 5326.9).

The following are the other assigned duties of the Office of Patients' Rights:

1. Be responsible for provision of training and consultations for all county advocates and for implementing patients' rights laws and for resolving complaints alleging violations of patients' rights.

2. Analyze and make recommendations regarding legislation on patients' rights.

3. Answer telephone calls and complaint letters from mental patients and their families and ensure that these complaints are resolved when appropriate.

4. Monitor the implementation of patients' rights laws and regulations in 58 local mental health programs, and in state hospitals; this is facilitated by periodic on-site reviews and through a review of county mental health contracts prior to state approval of county mental health budgets.

5. Maintain liaison with patient advocacy groups organized by former patients, their parents and families, and other concerned citizens through meetings, discussions, and regular exchange of materials and information.

C. Levels of Advocacy

Individual Advocacy: Local Patients' Rights Advocates' primary responsibility is the investigation and resolution of individual problems.

System Advocacy: In addition, Local Patients' Rights Advocates work to improve the mental health system by:

1. regular monitoring and audits of county mental health facilities for compliance with patients' rights laws;

2. review and comment on county policies and practice which affect recipients of mental health services;

3. providing consultation and generating policy questions for the State Office of Patients' Rights;

4. coordinating with other local Patients' Rights Advocates and external advocates for system reform;

5. analysis and recommendations on state and federal legislation and regulatory developments;

6. education and outreach to recipients of mental health services to increase clients' ability to advocate for themselves; and

7. represent clients' interest in public forums.

D. Local Patients' Rights Advocate

The "local" Patients' Rights Advocate is an assigned county employee or a person/agency under contract to act as advocate in each county mental health program. Fifty-eight counties work closely with the state's Patients' Rights Specialist and provide direct advocacy for persons with mental disability residing in or receiving psychiatric services from mental health facilities.

Each county mental health director must assign a patients' rights advocate and delegate to this person the responsibility for ensuring the statutory and constitutional rights of persons with mental disability. The formula used provides minimal staffing of one advocate for every 500,000 population. (DMH Policy Letter 80-26, 1980).

The duties of the local county Patients' Rights Advocates are:

1. To post the list of patients' rights in all mental health facilities as well as the name and telephone number of the county advocate's office and the State Office of Patients' Rights.

2. To ensure that all incoming patients and residents are notified of their rights and receive a copy of the Patients' Rights Handbook.

3. To train staff in mental health facilities regarding patients' rights laws, regulations and policies.

4. To investigate and resolve complaints received from clients about violations or abuse of their rights.

5. To act as advocate for patients and residents who are unable or afraid to register a complaint because of their mental or physical condition.

6. To act as a local consultant to mental health professionals in the area of patients' and residents' rights.

7. To act as a liaison between the county mental health program and the State Office of Patients' Rights.

(WIC 5520).

NOTE: Most Patients' Rights Advocate Programs also provide assistance to patients during certification review hearings.

E. Local Mental Health Directors

(Reprinted from the California Department of Mental Health's Introduction to the Mental Health Services Act (1987)

The local director of mental health services is the chief administrator of a state-supported community mental health program. While appointed by the local governing body to which s/he reports, each director must meet the standards of training and experience set by the State Department of Mental Health. Generally, the local mental health director is a licensed physician, usually a psychiatrist. Under certain circumstances, a non-medical administrator may be appointed.

The local director of mental health services shall have the following powers and duties:

1. Serve as chief executive officer of the community mental health service responsible to the governing body through administrative channels designated by the governing body.

2. Be responsible for the preparation of the county Short-Doyle plan, as specified in 5650.

3. Exercise general supervision over mental health services provided under the county Short-Doyle plan.

4. Recommend to the governing body, after consultation with the advisory board, the provision of services, establishment of facilities, contracting for services or facilities and other matters necessary or desirable in accomplishing the purposes of the Community Mental Health, Services Act.

5. Submit an annual report to the governing body reporting all activities of the program, including a financial accounting of expenditures and a forecast of anticipated needs for the ensuing year.

6. Carry on such studies as may be appropriate for the discharge of his/her duties, including the control and prevention of psychiatric disorders.

F. Health Facilities Licensing

Hospitals and Health Facilities must be licensed by the State of California in order to operate. If you discover a health problem or other serious problem at a hospital or health facility, it may be necessary to call Health Facilities Licensing. To find the phone number for Health Facilities Licensing, look in the front of your phone book under State Government Offices. Then look under the sub-heading entitled Health Services Department. (See Resource List.)

G. Community Care Licensing

Board and Care Homes and other community care facilities are licensed by the State Department of Social Services. Each area's local office is listed in the phone book in the State Government Offices listings under Social Services Department. (See Resource List.)

H. What is an Ombudsman?

(Prepared by Ombudsman/Advocate Inc., Santa Cruz, California)

What does the word Ombudsman mean? Ombudsman is a Scandinavian word used worldwide, meaning conciliation on behalf of citizens encountering difficulties in relation to government. As interpreted by organizations serving patients/residents in nursing homes, an Ombudsman is a trained volunteer who attempts to make nursing homes and governmental and community agencies more responsible to the needs of residents and their families. An Ombudsman thereby becomes an advocate of the residents.

How did the Ombudsman idea get started? By federal mandate in 1973 through the Older Americans Act. In 1975 a state Ombudsman office was established in the California Department of Aging which supports and provides minimal funding for more than 30 local programs. Right to access by the Ombudsman's office went into effect on January 1, 1980.

What do Nursing Home Ombudsmen do? Ombudsmen investigate and resolve complaints made by or on behalf of residents of long-term care facilities. Ombudsmen work to ensure that residents are getting the services they are entitled to and that quality of care improves. They monitor the conditions of care and try to find solutions, and when necessary, bring unresolved problems to the attention of appropriate agencies.

Volunteer Ombudsmen are assigned to skilled nursing facilities and residential care homes for the elderly and make regular visits to see residents and their families, to assist them in solving problems. Ombudsmen are available as a resource for resident and family councils and serve as witnesses for Durable Power of Attorney for Health Care or the Natural Death Act.

What types of problems can an Ombudsman resolve? Financial problems, inadequacies in Medi-Cal, nursing and other services, neglect or physical and emotional abuse, family problems, personal and relationship problems. All communications with an Ombudsman are confidential, and there is no charge for services. For assistance, the toll-free hotline number is (800) 231-4024.

I. Local Mental Health Board

(Welfare and Institutions Code 5604; updated by Assembly Bill AB 14, in effect October 28, 1992.)

WIC 5604 requires the supervisors of counties to have an advisory board of 10-15 members appointed by the governing body. Supervisors of smaller counties may have a minimum of 5 members on the mental health advisory board. Each board is composed of mental health professionals and representatives of the public interested in and informed on mental health matters. In general, each board functions to lend a helping hand in the overall planning and development of its community's mental health effort. Specifically, the law defines the board's functions as follows:

1. Review and evaluate the community's mental health needs, services, facilities and special problems.

2. Review any county agreements entered into pursuant to Section 5650.

3. Advise the governing body and the local mental health director as to any aspect of the local mental health program.

4. Review and approve the procedures used to insure citizen and professional involvement at all stages of the planning process.

5. Submit an annual report to the governing body.

6. Make recommendations regarding the appointment of a local director of mental health services.

7. Review and comment on the county's performance outcome data and communicate its findings to the California Mental Health Planning Council.

8. Nothing in this part shall be construed to limit the ability of the governing body to transfer additional duties or authority to a mental health board.

Composition:

1. One member shall be the chairperson of the local governing body.

2. Fifty percent of the board membership shall be consumers or the parents, spouses, siblings, or adult children of consumers, who are receiving or have received mental health services. At least 20 percent of the total membership shall be consumers, and at least 20 percent shall be families of consumers.

3. In counties under 80,000 population, at least one member shall be a consumer, and at least one member shall be a parent, spouse, sibling, or adult child of a consumer, who is receiving, or has received, mental health services.

J. Disability Rights California

(Excerpt from Description of Disability Rights California, Services 8/21/96)

In May, 1986, President Reagan signed PL 99-319 into law. The Act requires the developmental disabilities protection and advocacy system in every state (in California, Disability Rights California) to establish and operate a similar system for persons who are defined in the Act as "mentally ill." PL 99-319's mandate for P&A systems is twofold: first, to protect and advocate for the rights of such individuals through the enforcement of the Constitution and federal and state law and, second, to investigate incidents of abuse and neglect.

Under the Protection and Advocacy for the Mentally Ill Individuals Act, Disability Rights California has expanded and developed to provide advocacy services to persons identified as mentally ill. Additional professional staff with expertise in abuse, neglect and rights issues affecting those identified as mentally ill have been added to Disability Rights California's three offices and are available to provide the following services:

Information about the legal and service rights of persons identified as mentally ill and about procedures and sources of assistance in obtaining and enforcing those rights. This information is intended to assist people in addressing and resolving their problems independently. Disability Rights California's information services are not intended to and do not provide specific legal advice for individual problems. As part of this service Disability Rights California maintains a statewide toll-free number.

Referral to other sources of assistance, including other providers of advocacy services.

Technical assistance, training and support to persons identified and mentally ill, their families and advocates in the resolution of individual and systematic problems.

Direct representation of persons identified as mentally ill, including investigation of complaints of abuse, neglect and rights violations, and legal representation in administrative and judicial proceedings to establish and enforce their legal and service rights within the priorities identified in Disability Rights California's Three-Year Plan.

Monitoring and analysis of administrative policy, regulations and legislation which actually or potentially infringe upon or contravene the rights of persons identified as mentally ill.

Short Term Assistance. Disability Rights California will provide short-term assistance in the resolution of individual problems through the consultation or provision of advocacy and rights materials.

Peer/Self-Advocacy Training for persons identified as mentally ill. This training is provided by current and/or former mental health clients. The purpose of the training is to assist other clients in learning to advocate for themselves within the mental health system.

1. Eligibility

In keeping with the requirements of PL 99-319, Disability Rights California's mental health advocacy services are available to persons who:

(a) Have a significant mental illness or emotional imDisability Rights Californiarment, as determined by a mental health professional; AND

(b) Are currently in a facility providing care or treatment; or

(c) Have complaints involving matters which occurred within 90 days of discharge from a facility providing care or treatment.

Disability Rights California will also consider the following factors in determining whether to undertake a case: whether the complaint represents a meritorious claim; whether the individual is able to advocate for him/herself; whether other competent resources are available; whether Disability Rights California resources are available to provide assistance.

Disability Rights California will only provide direct client representation when the problem is clearly related to the person being mentally ill or identified as mentally ill. Disability Rights California will not provide representation when the problem is one commonly accepted by private or legal aid programs. When a legal problem involves a statutory right to an attorney or an advocate, such as mental health commitment hearing or a criminal proceeding, Disability Rights California will not become involved unless there are compelling circumstances such as the need for legal expertise regarding the rights of the person involved.

Disability Rights California does not represent the interest of the mental health care provider, families or guardians, or conservators of persons identified as mentally ill.

2. To Obtain Services

Persons seeking Disability Rights California services may use the Disability Rights California toll-free number by dialing (800) 776-5746 from anywhere in California, or by contacting one of Disability Rights California's local offices:

Central Office, 100 Howe Avenue, Suite 185-N, Sacramento, CA 95825, (916) 488-9950

Toll Free/TDD: 1-800-776-5746

Bay Area Office, 433 Hegenberger Road, Suite 220, Oakland, CA 9461, (510) 430-8033, Toll Free/TDD: 1-800-776-5746
Southern California Area Office, 3580 Wilshire Blvd., Suite 902, Los Angeles, CA 90010, (213) 427-8747, Toll Free/TDD: 1-800-776-5746

3. Fees

Disability Rights California does not charge for any of its services. However, in individual cases, Disability Rights California may ask for reimbursement for costs in the course of providing representation, based on a client's ability to pay. Such costs may include witness fees, court and travel costs, etc.

K. California Mental Health Planning Council

(Prepared by the California Mental Health Planning Council)

The California Mental Health Planning Council (CMHPC) has been an invaluable instrument of public involvement in mental health planning. It has been particularly effective as a vehicle for involvement of direct consumers and families. In addition to the federal planning duties, state legislation, Chapter 564, Statutes of 1993 (SB 43) added new responsibilities and duties that are critically important to the provision of public input, system accountability and oversight. These duties include:

Advocating for effective, quality mental health programs.

Reviewing, assessing, and making recommendations regarding all components of the mental health system; and reporting, as necessary, to the Legislature, the Department, local boards, and local programs.

Reviewing program performance in delivering mental health services by annually reviewing performance outcome data and reporting findings and recommendations to the Department of Mental Health, the Legislature, and local mental health programs.

Advising the Legislature, the Department, and county boards on mental health issues, policies, and priorities that the State should be pursuing.

Reviewing the State's data systems and paperwork requirements to ensure they are reasonable.

Making recommendations to the Department on awarding grants to county programs to reward and stimulate innovation.

Conducting public hearings on the State mental health plan, the Mental Health Block Grant, and other topics are needed.

Participating in the recruitment of candidates for Director of Mental Health.

Assisting in the coordination of training and information dissemination to local mental health boards.

Advising the Director on the development of the State mental health plan and its priorities.

Suggesting rules, regulations, and standards for the administration of mental health programs.

Mediating disputes between the State and counties when requested.

Accepting federal or private grants and donations.

 

CHAPTER 3

RIGHTS IN INPATIENT FACILITIES

A. Undeniable Rights (All references are to the California Welfare and Institutions Code unless otherwise stated.)

No one, simply by virtue of being a voluntary or involuntary patient in a psychiatric facility, loses the fundamental rights and responsibilities possessed by every citizen. (See Welfare & Institutions Code (WIC 5325.1.) The California Legislative has identified certain rights that patients have which are "undeniable rights." These rights are not subject to the "denial for good cause" provisions described below. (WIC 5325, 5326.)

These undeniable rights are:

1. A right to treatment services which promote the potential of the person to function independently. Treatment should be provided in ways that are least restrictive of personal liberty.

2. A right to dignity, privacy, and humane care.

3. A right to be free from harm, including unnecessary or excessive physical restraint, isolation, medication, abuse or neglect. Medication shall not be used as punishment, for the convenience of staff, as a substitute for program, or in quantities that interfere with the treatment program.

4. A right to prompt medical care and treatment.

5. A right to religious freedom and practice.

6. A right to participate in appropriate programs of publicly supported education.

7. A right to social interaction and participation in community activities.

8. A right to physical exercise and recreational opportunities.

9. A right to be free from hazardous procedures.

B."Deniable Rights and "Good Cause"

The Legislature has also identified certain rights of patients which cannot be denied except for "good cause." (See WIC 5326.)

1. To wear their own clothes.

2. To keep and use their own personal possessions including their own toilet articles.

3. To keep and be allowed to spend a reasonable sum of their own money for canteen expenses and small purchases.

4. To have access to individual storage space for private use.

5. To see visitors each day.

6. To have reasonable access to telephones, both to make and receive confidential calls or to have such calls made for them.

7. To have ready access to letter writing materials, including stamps, and to mail and receive unopened correspondence.

C. What is "Good Cause"?

The Legislature has given the Director of Mental Health the authority to adopt regulations outlining the conditions under which these rights can be denied. (See 9 California Code of Regulations (CCR) 865.2.) (As of January 1988 the California Administrative Code is now referred to as the California Code of Regulations.) According to these regulations, "Good Cause" for denying a patient one of these rights exists if the professional person in charge of the facility (or someone whom that person designates) has a good reason to believe:

1. That the exercise of the specific right would be injurious to the patient/resident; or

2. That there is evidence that the specific right, if exercised, would seriously infringe on the rights of others; or

3. That the institution or facility would suffer serious damage if the specific right is not denied; and

4. That there is no less restrictive way of protecting the interests specified in 1, 2, or 3. (9 CCR 865.2)

It is important to stress here that even if the exercise of a particular right may be injurious to a patient, a serious infringement on the rights of others, or cause serious damage to the facility, the right still may not be denied if there is a less extreme measure which would protect these same interests and still leave the patient's rights intact.

The hospital staff has an obligation to give the patient an explanation of why a particular right is being denied. (9 CCR 865.3(a)(3)(b)

It should also be emphasized that a right cannot be denied as a punishment, or as part of a treatment regime, or treated as a privilege that has to be earned. (9 CCR 865.2(b)(c))

The use of seclusion and restraints is subject to narrower restrictions, and cannot be imposed unless there is no sufficient alternative to protect the patient or others from injury. (9 CCR 865.3, 865.4; 22 CCR 71545)

When good cause no longer exists to justify the denial of a right, that right must be restored to the patient. It is good practice for the patient to be given a full, clear explanation of how to have a right restored.

D. Additional Rights Not Subject to "Denial For Good Cause."

1. The right to see a patients' rights advocate (WIC 5325(h)) is not among those rights that can be denied for good cause. (WIC 5326)

2. Patients also have the right to refuse psychosurgery and electroconvulsive treatment (commonly known as "ECT" (or "shock treatment"). The right to refuse these procedures cannot be denied for good cause. However, ECT can still be given involuntarily if a court determines that the person lacks the capacity to give written informed consent, and written permission is given by a responsible relative, guardian or conservator of the patient. For complete information on what constitutes written informed consent, consult the California Welfare and Institutions Code 5326.2, 5326.3, 5326.4 and 5326.5.

3. A voluntary patient has the right to leave the hospital rather than to accept the denial of his or her rights. The patient must be informed of this at the time of admission. (9 CCR 865).

Welfare and Institutions Code 6002 states: "A voluntary adult patient may leave the hospital at any time by giving notice of his or her desire to leave to any member of the hospital staff and completing normal hospitalization departure procedures."

The Welfare and Institutions Code also indicates that it is possible that a patient who has become voluntary may become involuntary again under some circumstances. (WIC 5258). But, not only would the patient have to again meet the grounds for involuntary commitment (WIC 5150 and 5250(c)), but the intervening period of voluntary treatment can never be used to "stretch out" the total time that the person could be held against her or his will. (WIC 5258).

4. All patients have the right to confidentiality in respect to information and records involved in their treatment. (WIC 5328 et seq.)

For a thorough breakdown on all the specifics regarding the right to confidentiality, consult the chapter on Confidentiality in the Patients' Rights Advocacy Manual.

E. Complaint Procedure.

A patient whose right has been denied unlawfully can report it to the Patients' Rights Advocate who is required to investigate the complaint and to attempt to resolve it. The exact Title 9 complaint procedure reads as follows:

The list of rights that shall be posted, provided, or explained to the patient/resident pursuant to Section 862 shall contain:

1. Notification that any patient/resident who believes a right of his/hers has been abused, punitively withheld, or unreasonably denied may file a complaint with the Patients'/Residents' Rights Advocate.

2. The name of the Patients'/Residents' Advocate who has been assigned to handle such complaints, his/her telephone number, and the times during which s/he may be contacted.

When a complaint is received by the Patients'/Residents' Advocate, s/he shall, within two working days, take action to investigate and resolve it.

If the complainant expresses dissatisfaction with the action taken, the matter shall be referred, within five working days, to the local mental health director if the complaint originated in the mental disabilities program or to the regional center director if the complaint originated in the developmental disabilities program.

If the complaint cannot be satisfactorily resolved by the local mental health director or by the regional center director within ten working days, it shall be referred to the Patients' Rights Specialist, Department of Health, whose responsibility shall be to make a decision in the case. Appeal from the decision of the Patients' Rights Specialist may be made to the Director of State Department of Health, or his/her designed. (9 CCR 864, a-d).

F. Assembly Bill 595 (Bates 1981).

The following is an excerpt from the First Edition of the Patients' Rights Advocacy Manual (June 1985) printed by the California Department of Mental Health. This excerpt identifies ways in which Assembly Bill 595 (Bates 1931) has had a major impact on the patients' rights advocacy system.

This legislation:

1. Grants patients a statutory right to see and receive the services of a county patients' rights advocate, and establishes that a patient is presumed competent to enter an agreement with an advocate unless specifically found otherwise by a court. (WIC 5523(a) and 5325(b)).

2. Prohibits parents, guardians, or conservators from waiving any rights specified in WIC 5325.

3. Allows the county patients' rights advocates, when authorized by the client or guardian ad litem, access to patient information when necessary for the performance of their duties, with the exception of evidence given in confidence by members of the patient's family. (WIC 5328(m)).

4. Establishes a State Patients' Rights Office in statute with specific training functions. (WIC 5510 and 5512).

5. Confirms that a patient has the right to see and receive the services of an advocate who has no direct or indirect clinical responsibility for the patient. (WIC 5325(h) and 5500(d)).

6. Provides access for the county advocate to public and private health and community care facilities to monitor compliance with, and/or investigate complaints of patients' rights violations. (WIC 5530).

7. Provides for the assessment of civil penalties in instances where patients' rights violations exist, including obstruction of county advocates in their duties. (WIC 5326.9 and 5550(b) and (e)).

8. Prohibits facilities from discriminating against patients or employees who file a complaint. (WIC 5500(c)).

9. Establishes a penalty for privacy and confidentiality violations by county advocates. (WIC 5500(d) and (e)).

10. Provides under specified circumstances (including patients' release authorization) for the county advocate to copy confidential information and to provide to the patient information from his/her record, with the exception of information given in confidence by members of the patient's family. (WIC 5540-5546).

11. Permits the Director of Mental Health, or a state hospital executive director, to contract with independent agencies for advocacy services in state hospitals. (WIC 5511).

12. Confirms in statute a Patients' Rights Subcommittee of the California Advisory Council on Mental Health. (WIC 5514).

G. Medication Rights

1. Your Right To Give Or Refuse Consent For Psychiatric Medications

(Excerpted from Brochure by Mental Health Advocacy Project)

All mental health patients have the right to give informed consent for psychiatric medications, unless a judge has specifically ruled that they are not competent to consent to medications or there is an emergency.

Informed consent means that you knowingly and intelligently, without duress or coercion, clearly and explicitly have given consent to the proposed medications. This right applies to all medications used to treat psychiatric or emotional conditions.

The doctor must provide you with the following information so that you can make an informed decision about the medications.

(a) A description of the nature and seriousness of your mental condition, disorder, or behavior.

(b) An explanation of the reasons for the medication.

(c) The name and type, frequency, amount and method of dispensing the medication, and the probable length of time that the medication will be taken.

(d) A description of the likelihood of improvement, and the probable degree and duration (temporary and permanent) of improvement or remission expected with (and without) the medication.

(e) An explanation of the nature, degree, duration, and probability of the side effects and interactions (with other medications you are taking) the risks and how and to what extent they may be controlled, if at all.

(f) An explanation of the reasonable alternative treatments available (including other medications and non-medication oriented treatment) and why the doctor is recommending this particular medication.

You have the right to accept or refuse the proposed medication. If you consent, you have the right to revoke consent for any reason, at any time.

Your consent is also required in order to increase medication dosage or to change from one medication to another.

Questions to Ask About Medications

Feel free to ask your doctor or the nursing staff about your condition and your medications. Examples of questions include:

(a) What is your diagnosis of my condition? Explain what that means.

(b) What kind of medication are you prescribing?

(c) What other kinds of medication could be prescribed for my condition?

(d) Why are you prescribing this medication rather than others?

(e) What kinds of treatment, other than medication could be used for this condition?

(f) Why are you prescribing this medication rather than that treatment?

(g) How much medication are you prescribing?

(h) Why are you receiving at this dosage?

(i) Is this the normal dosage?

(j) What are the side effects of this medication?

(k) What is the likelihood of improvement with the medication? How will I improve?

(l) What is the likelihood of improvement without the medication?

(m) What will happen to me if I don't take the medication? What will the symptoms be?

(The above has been reprinted by permission from Mental Health Advocacy Project.)

2. Limitations On The Right To Refuse Medications For People On 72 Hour ( 5150) Holds Or 14 Day ( 5250) Holds.

(a) A legally defined EMERGENCY SITUATION. Welfare & Institutions Code Section 5008 (m) defines an "Emergency" as: A situation in which action to impose treatment over the person's objection is immediately necessary for the preservation of life or the prevention of serious bodily harm to the patient or others, and it is impractical to first gain consent. It is not necessary for harm to take place or become unavoidable prior to treatment.

(b) A decision by a JUDICIALLY APPOINTED HEARING OFFICER. If you refuse medications, your doctor may file a petition with the county, and ask for a hearing at which a judicially appointed hearing officer will determine if you are capable of giving or refusing consent to take medications. The hearing will be held at the facility and you are entitled to representation by a Patients' Rights Advocate. This hearing is different from a writ of habeas corpus and a conservatorship hearing.

At a capacity hearing, the hearing officer will decide:

(i) whether you are aware of your situation and condition;

(ii) whether you are able to understand the benefits and lists of, as well as alternatives to, the proposed medication;

(iii) whether you are able to understand and evaluate the information and to rationally participate in treatment decisions.

If the hearing officer determines that you are not competent to make these decisions, the doctor has the authority to order medications without your consent. You have a right to appeal the decision to the superior court. If you decide to do that, you will have a lawyer appointed to represent you, and a judge will hear the case "de novo" which means "new." (In other words, the judge will not merely review whether the hearing officer made a correct determination at the time of the first hearing, but will take a fresh look at all the evidence.)

The hospital can continue the medication, pending the new hearing.

If the hearing officer decides that you do have the capacity to refuse medication, the hospital can also appeal the decision to the superior court, but you may not be medicated involuntarily in the meantime.

H. Background On California's Informed Consent Law

1. The Rights of Involuntary Patients With Respect to Psychotropic Medications.

(From Protection & Advocacy, Inc., Newsletter #31, Summer 1989.)

On June 22, 1989, the California Supreme Court unanimously reinstated a landmark 1987 Court of Appeal decision upholding the right of persons subject to short-term mental health commitment to make their own decisions concerning the use of psychotropic medications, unless a person has been judicially determined incapable of making such decisions, or an emergency exists. (Riese, et al. v. St. Mary's Hospital and Medical Center, No. S004002, Court of Appeal No. A034048.) The Court of Appeal's decision became final on June 29, 1989.

2. Legal Basis for the Decision

The Court's decision was based on extensive legislative history and numerous provisions in the Lanterman-Petris-Short (LPS) Act which guarantee involuntarily committed persons the same basic rights as all other citizens, and prohibit the imposition of legal disabilities without a judicial determination of patients' incompetence. The Court also declared that, entirely apart from the LPS Act, the right to give or withhold consent to medical treatment with these drugs is protected. by the common law and the right of privacy explicitly guaranteed by the California Constitution.

3. What the Decision Means?

Who is Affected? The individuals covered by the Court of Appeal's ruling are those persons involuntarily committed under California Welfare and Institutions Code, 5150 and 5250. Under these provisions, individuals may be involuntarily held in mental health facilities for up to 17 days.

Which Drugs are Included? The Court adopted the definition in the California Code of Regulations which defines "antipsychotic medication" as those drugs which are "customarily used for the treatment of symptoms of psychoses and other severe mental and emotional disorders."

What is required of Treatment Staff? The Court recognized that treatment staff already have a statutory obligation to provide patients with detailed information regarding psychotropic medications and their side effects so that patients can make informed treatment decisions. This information includes: an explanation of the person's mental condition and why the person needs the medication, a description of the medication, including its name, type, the amount prescribed and how often it is to be taken; the likelihood the medications will bring about improvement of the person's mental condition; a description of the side effects and their probability and seriousness; and the available alternative treatments.

When May Individuals Be Involuntarily Medicated? Individuals may only be medicated over their objection in an emergency, or in the event a hearing has been held and a judge has determined that the person is incapable of making an informed decision about whether or not to use antipsychotic medications.

What Constitutes an Emergency? The Court adopted the existing definition of emergency contained in the California Code of Regulations: "an emergency exists when there is a sudden marked change in the patient's condition so that action is immediately necessary for the preservation of life or the prevention of serious bodily harm to the patient or others, and it is impracticable to first obtain informed consent." This definition has been used since 1980 to permit the involuntary administration of antipsychotic drugs to voluntary mental health patients in emergencies.

Who Must Have Hearings? Hearings are only required in non-emergency situations when a person refuses antipsychotic medications and the doctor and patient are unable to agree upon an alternative treatment plan.

What Type of Hearing is Required? As is the norm in California, there must be a competency hearing before a judge to determine whether the person is able to understand, and knowingly and intelligently act upon, the information required to be given regarding the drug treatment. At the hearing, the government (the hospital and its legal representative) has the burden of proving the person's incapacity by clear and convincing evidence.

What is the Court to Decide at the Hearings? The Court's role is "to determine whether a patient refusing medication is competent to do so despite his or her mental illness. The Court is not to decide such medical questions as whether the proposed therapy is definitely needed or is the least drastic alternative available, but may consider such issues only as pertinent to assessment of the patient's ability to consent to treatment."

The Court's determination of the person's competency to consent to antipsychotic drug treatment should focus on three factors: (1) whether the person is aware of his or her situation; (2) whether the person is able to understand the benefits; and the risks of, as well as the alternatives to, the proposed drug intervention; and (3) whether the person is able to understand, and knowingly and intelligently evaluate, the information required to be given, and otherwise participate in the treatment decision by means of rational thought processes.

If a person is judicially determined to possess the capacity to give informed consent to the use of antipsychotic drugs and refuses to do so, the person may not be required to undergo the treatment. If the person is judicially determined incapable of giving informed consent, he or she may be required to accept the prescribed medications.

[NOTE: In 1991, the California State Legislature enacted a statute which embodied most of the principles of the Riese v. St. Mary's decision, but made a number of modifications (like enacting a different definition of emergency, and allowing lawyer hearing officers appointed by judges, instead of judges themselves to make the initial decision. The current statute is found in Welfare & Institutions Code sections 5332-5337.] (See attachment.)

Discussion Questions

You are on the ward giving information about patients' rights. How can you answer the following questions?

1. Angela is heartbroken because on admission she was required to take off her ring and turn it over to the admitting staff to be put in the safe. She wants to know if she can get it back. What can you do or say?

2. Bill is troubled because, though he is a voluntary patient and signed a form consenting to medication, he now feels as though the drugs are affecting him in a bad way. His doctor told him that if he refused the medication, he could be put on an involuntary hold and would not be allowed to leave the hospital. What are Bill's rights?

3. Flora is afraid because a staff member told her that if she doesn't attend all groups she will be put into seclusion. What are her rights?

 

CHAPTER 4

DUE PROCESS RIGHTS

A. 72-Hour Hold (See California Welfare and Institutions Code 5150 and following.) (All citations refer to Welf. & Inst. Code unless otherwise noted.)

The law allows the professional staff at a psychiatric facility to detain a person for 72 hours if the staff has probable cause to believe that, due to a mental disorder, the person being detained is:

1. a danger to others; and/or

2. a danger to him or herself; and/or

3. gravely disabled. (Grave disability is defined as: "a condition in which a person, as a result of a mental disorder, is unable to provide for his or her basic personal needs for food, clothing or shelter.")

The person must be given written notice of why he or she is being held. ( 5157). While the person is detained for 72 hours, the hospital is required to do an evaluation of the person consisting of a multi-disciplinary analysis of the person's medical, psychological, educational, social, financial and legal situation. ( 5152, 5008(A)).

The hospital is under no obligation to hold the patient for the complete 72 hours. The psychiatrist should release the patient prior to the end of the 72 hours if the psychiatrist believes the patient no longer requires evaluation or treatment. ( 5152).

By the end of the 72 hours, one of the following things may happen:

1. the person may be released;

2. the person may sign in as a voluntary patient;

3. the person may be put on a 14-day involuntary hold (called a "certification for intensive treatment").

B.14-Day Hold (See 5250 and following.)

If the treating psychiatrist believes the patient is still a danger to self, a danger to others and/or gravely disabled due to a mental disorder or chronic alcoholism, and is unwilling or unable to accept treatment on a voluntary basis, then the psychiatrist may certify the patient for an additional 14-day period. At this time the patient is entitled to written notice of this fact including a statement of specific reasons for the psychiatrist's decision, which is followed by a certification review hearing.

1. Certification Review Hearings

The person being certified is entitled to notice of a certification review hearing to be held within seven days of the original detention, although a patient or advocate (but not the hospital staff) may get the hearing postponed for up to 48 hours. (If the patient is held in a county with 100,000 people or less, the hearing may be postponed until the next scheduled hearing date, even if the time exceeds 48 hours.) ( 5256 et seq). A certification review hearing is automatically scheduled for all patients regardless of whether they request it. This is to guarantee that no patient misses out on a hearing due to an inability to request one, intimidation or fear of requesting one, or for any other reason. Also the focus is on the hospital to justify its involuntary hold on the patient since it is the hospital which is imposing the hold. The burden is not on the patient.

2. Attending the Hearing

A patient who does not want to attend her or his hearing does not have to, and may waive his or her presence with the assistance of an advocate or attorney. ( 5256.3). If a patient wishes to challenge the hold and be released, it is usually advisable to be present at the hearing.

3. How the Hearing is Conducted

The certification review hearing is conducted in an informal manner by a hearing officer who has been either appointed by the court or selected by a special panel. The hearing officer must be a neutral person and may not be employed by the hospital or the county mental health program. The person who has been certified is entitled to assistance by an attorney or an advocate. In most counties, the patients' rights advocate provides representation. Also, someone will be present at the hearing who represents the facility and will offer evidence in support of the hold.

The patient may not only present evidence on his/her own behalf but can question those who represent the facility. The person may have family, friends or a peer advocate present to offer supportive evidence. The hospital representative may want to invite family members to the hearing if the representative believes that the family may offer evidence in support of the hold. However, the patient has the ultimate right to request that the family not be notified by the hospital. ( 5256.4(c)).

At the end of the hearing, if the hearing officer concludes that there is not a "probable cause" that due to a "mental disorder" a patient is a danger to self, a danger to others or gravely disabled, then that patient may no longer be held involuntarily.

If the hearing officer concludes that there is "probable cause" to continue holding the patient, then that patient may be held. Many patients who have been held after their certification hearing decide to take advantage of their right to file a Writ of Habeas Corpus and go before a judge to present their case.

4. Writ of Habeas Corpus Hearing

At the time the patient is first served with the notice of certification described above, the patient is also entitled to notice about the right to appear before a judge in a legal proceeding called a Writ of Habeas Corpus hearing. ( 5275). At this hearing, the patient is entitled to be represented by court appointed or private legal counsel who must help the patient challenge the grounds of the involuntary hold. ( 5264). A hearing for Writ of Habeas Corpus does not happen automatically. The patient must make a specific request for one by notifying the person giving the notice or any member of the treatment staff at the hospital. ( 5275). In many counties patients may make direct contact with the public or private defenders' offices who will then make arrangements for a hearing. Also, the patients' rights advocate is often available to assist in making arrangements.

If the patient asks to file a Writ of Habeas Corpus right at the time of being served a notice of certification, the writ hearing will take precedence and the certification review hearing will not take place. Many patients find it is a smart strategy to wait and see how things go at the certification review hearing. There are two reasons why this is advisable. First, the certification review hearing is generally scheduled as soon as, if not sooner than, a writ hearing. Second, if the patient loses at the certification review hearing, the patient can then take advantage of the right to file a Writ of Habeas Corpus and end up having two hearings instead of just one.

C. After the 14-Day Hold

By the end of the fourteen days, one of three things will happen:

1. the person may be released;

2. the person may decide to sign in as a voluntary patient;

3. the person may be held for an additional period of time.

D. Additional Holds Beyond the 14-Day Certification

If the psychiatrist wants to continue treating the person involuntarily there are three different mechanisms that can be used, depending on whether the person is certified as a danger to self, a danger to others or gravely disabled.

1. Danger to Self (Additional 14-Day Hold) ( 5260)

If at the end of the 14 days the person is considered to be suicidal, the hospital can certify the person for an additional 14 days and must file the notice of certification with the Superior Court. The patient may request a review of this by filing a Writ of Habeas Corpus as described above.

At the end of the additional 14 days allowed for danger to self, one of three things will happen:

(a) the person will be released;

(b) the person may sign in as a voluntary patient;

(c) if the person is also considered to be a danger to others or gravely disabled, the person can be held longer according to the provisions described below.

2.Danger to Others (Post-Certification Hold). ( 5300)

A person can be held for longer than 14 days if that person is considered to be imminently dangerous to other people as a result of a mental disorder.

The professional person in charge of the facility may ask the district attorney (or the county counsel) to file a petition with the Superior Court for an order requiring the person to undergo additional treatment for up to six months. This six-month period may be renewed if the person has attempted, inflicted or made serious threats of substantial physical harm toward another person during the six-month period. ( 5304(b)).

The person has a right to be represented by an attorney at the hearing and may demand a jury trial.

3.Gravely Disabled (Conservatorship Proceedings). ( 5350)

A person who has been certified as gravely disabled can be subject to an additional 30-day hold if the following conditions are met: The County Board of Supervisors must agree to apply this provision in that county ( 5279.1). The person must still meet the criteria of grave disability after the 14-day hold, and be unwilling to be a voluntary patient ( 5270.15). If a 30-day post-certification hold is instituted, the client is entitled to a judicial review to determine the need for continued involuntary treatment. A 30-day hold may run concurrently, but not consecutively, with a temporary conservatorship described below. ( 5270.55.(c)).

If the person is considered "gravely disabled," the hospital can apply to the public guardian's office for "temporary conservatorship". This means that the patient can be held for an additional 30 days pending an investigation by a representative of the public guardian as to whether or not the patient is incapable, due to a "mental disorder" or chronic alcoholism, of providing food, clothing and shelter, and is unable or unwilling to consent to treatment as a voluntary patient. If the person doing the investigation believes this is true, a petition for a full, year-long conservatorship will be filed with the Superior Court. A hearing will be held before the end of the 30-day period unless the patient requests a jury trial. If the client requests a jury trial on the issue of whether s/he is gravely disabled, the court may extend the period of temporary conservatorship until the jury trial. However, the extension period before trial can never be longer than six months. (See "What's Grave Disability?" which follows.)

During the 30-day period, the patient can be detained at the hospital involuntarily if the temporary conservator gives consent to the hospitalization.

At the conservatorship hearing, the patient will be represented by a lawyer and will have a chance to present evidence to show that a conservatorship is not needed. Many patients find that it helps to have friends and/or family present who will testify on their behalf and offer practical assistance in terms of housing and support.

If the judge or jury decides that the patient is "gravely disabled" and needs a "permanent conservator" for a period of time longer than 30 days, a conservator can be appointed for a one-year period. This appointment may be renewed annually. The person appointed to be conservator can be a person from the guardian's office, or can be a family member or a friend or some other person. At the judge's discretion, the conservator may be given the power to consent to psychiatric treatment for the patient whether or not the patient wants it. However, non-psychiatric medical decisions are still up to the patient unless s/he has been judged incompetent to make those decisions as well. There are additional powers that the conservator can be given which are described in Welfare and Institutions Code 5357 and 5358. These include not allowing the client: to possess a driver's license, to vote, to enter into contracts or to refuse general medical treatment.

Any person placed on conservatorship can file a petition in the Superior Court for a rehearing. ( 5364). However, after the rehearing has been held, if the court decides that the person must remain on conservatorship, the person must wait for six months before filing another petition for a rehearing. Furthermore, any person on a conservatorship may a file a petition to contest any of the specific rights they have lost, or powers granted to the conservator. The person can file at any time, but once one petition has been filed and heard, the person must wait six months before being able to file again. ( 5358.3).

A Writ of Habeas Corpus is available to clients on temporary conservatorship. Writs are also available to clients on year-long conservatorship, if conditions or their placement become substantially more restrictive.

Writs Of Habeas Corpus For Psychiatric Clients:

Statutory v. Constitutional Writs

1. Distinctions

Statutory writs are provided for explicitly in the statute. The client is guaranteed to get into court within 48 working hours of when the petition for writ of habeas corpus is filed. The client is guaranteed free counsel if s/he cannot afford to pay.

Constitutional writs are available whenever someone is held against his/her will (i.e. jail, child custody disputes, and psychiatric holds where statutory writ is not provided). A conservatorship, even one in which the client is not confined to a facility, is still a hold (due to loss of liberty and imposition of stigma).

For constitutional writs, there is no guarantee that the client will get to court. Therefore, it is extremely important to fill out the form correctly. Also, there is no guarantee of court-appointed counsel. If the client does go to court, there is no speedy deadline for this to occur.

Conservatees should exhaust other remedies before filing constitutional writs (petitions for rehearings on status as conservatee and to have rights restored).

STATUTORY WRITS apply to:

  • 5250 et seq 14-day certification
  • 5260 2nd 14-day certification for imminently suicidal (this is still a 14-day certification)
  • 5308 Revocation of outpatient status of one on a post-certification hold for dangerousness to others
  • 5353 Temporary Conservatees

CONSTITUTIONAL WRITS apply to:

  • 15150 72 hour involuntary hold
  • 15300 et seq People held on post-certification holds for dangerousness to others only have statutory right to writ when outpatient status is revoked. In all other situations, they are limited to constitutional writs.

In Re Gandolfo Conservatees (not temporary conservatees) (1984) for which statutory review procedures 36 Cal 3d (rehearings) are inadequate and result in unreasonable, detrimental consequences.

SACRAMENTO LEGAL OFFICE
100 Howe Avenue, Suite 235 North, Sacramento, CA 95825-8202
Telephone: (916) 488-9950 Fax: (916) 488-9960
Toll Free/TTY/TDD: (800) 776-5746

 

PETITION FOR A WRIT OF HABEAS CORPUS -- LPS ACT

INSTRUCTIONS FOR PREPARING AND FILING PETITION

IN STATE COURTPREPARING THE PETITION

General Considerations

1) Read the entire form as well as these instructions before answering any questions.

2) Fill out the form as clearly as possible in ink or by typing your answers.

3) If you don't have enough space to answer any of the questions, finish your answer(s) on (an) additional page(s) and attach them to the back of the page. Note on the petition that your answer is "continued on additional page(s)."

4) Attach copies of any documents which support your claim or which are necessary to understand your claim. For example, if you were put in restraints without sufficient grounds, you might wish to include the copies of any complaints you've filed or copies from your medical chart.

5) Make certain that all of the statements you make are true to the best of your knowledge. If you make statements in the petition you know to be false, you can be prosecuted for perjury.

Instructions for Filling Out the Petition Form

For your reference, a blank petition has been attached. It may be helpful to refer to these when reading the directions below.

A) Boxes at the Top of the Petition Form

1) In the box that says "ATTORNEY OR PETITIONER WITHOUT AN ATTORNEY" fill in your name, the facility name and address, and the phone number (with area code)at which you can receive calls. For example, if you are a patient at Napa State Hospital, you would fill out this first box as follows:

Your name

c/o Napa State Hospital

2100 Napa-Vallejo Highway

Napa, CA 94558-6293

Remember to include your phone number and date of birth where indicated.

2) In the box that says "SUPERIOR COURT OF CALIFORNIA, COUNTY OF: " write the name of the county where you are presently confined. For example, Napa State Hospital is in Napa County.

3) Below the phrase "IN THE MATTER OF (NAME):" write your full name.

4) Leave the box that asks for your case number blank; the court will assign you a case number after your petition is filed.

B) Numbered questions/statements

1) Write the name of the hospital in which you are being held and, if you know, the name of your treating psychiatrist.

2) Write the date of your admission next to the phrase "(date)" on the first line of this section. Then, check the box that states your legal status. For example, if you are being held on a 14-day certification, check the box that says "W & I 5250 (14-day certification)."

3) If you are challenging the legitimacy of your confinement:

Check box "a", and list the reasons you believe your confinement to be illegal. For example, if you are being held on the basis of "grave disability" and you believe that you now have the ability to provide for your food, clothing and shelter needs, state this, and provide any information you have to show how you would meet your needs, including the assistance of other individuals or agencies. If you are being held on the basis of dangerousness to self or to others, and you feel that you are no longer a danger to yourself or others, state this, and provide any information you have to support that you are no longer a danger to yourself or others. Use extra sheets if you need to.

If you are challenging the conditions of your confinement:

Check box "b", and clearly describe the rights that are being denied you while you are confined, and the date(s) on which the violation(s) occurred. You can challenge the denial of any right which you are entitled to under state or federal law (including the constitution, court cases, statutes and administrative regulations) or under the policies of the facility in which you are being held. These might include such rights as the right to access to your possessions, the right to have visitors, the right to make phone calls and send and receive mail, the right not to be secluded or restrained inappropriately or excessively, the right not be involuntarily medicated on a nonemergency basis, etc. (For examples, see Welfare and Institutions Code 5325.) As noted above, it will be helpful (but is not necessary) for you to refer in your petition to the statute number, policy number, case citation, etc. guaranteeing the(se) right(s).

Usually, you can only protest when rights are currently being denied you or when you have evidence you will be denied your rights in the foreseeable future (such as if you are told that you are going to be transferred to a more restrictive unit/facility).

If you have been denied a right in the past and feel that you are at risk of being denied that right again for similar reasons, you may claim this as a right which has been violated. For example, if you were put in restraints for refusing medication, and the staff still claims that it has the right to do so, you could claim this as a violation of your rights, even if you have now been released from restraints, as you might be put in restraints again for the same reason in the future.

4) Check boxes a, b, c, and d. If you cannot afford an attorney to represent you in the habeas proceeding, next to or below box "d," you should write "including appointment of counsel to represent me in this action, as I am indigent."

C) Verification and Signature

Write the current date where indicated. Print or type your name on the line in the bottom, left corner. Sign your name on the line in the bottom, right corner.

FILING THE PETITION

1) Mail the originals and two (2) copies of the petition and any supporting documents (including any request for appointment of counsel) to the Superior Court for the County in which you are being held. For example, if you are being held in Napa State Hospital, the address is:

Napa County Superior Court

825 Brown St., P.O. Box 880

Napa, 94559-0880

E. What is Grave Disability?

(From Patients' Rights Advocacy and Training, Martinez, CA)

As a basis for involuntary commitment, Welfare and Institutions Code 5008 defines "grave disability" as: "A condition, in which a person, as a result of a mental disorder, is unable to provide for his or her basic needs for food, clothing or shelter..."

In the landmark case, Doe v. Gallinot, 486 F.Supp. 983 and 991, the court explored the meaning of "grave disability" in light of the U.S. Constitution. It stated:

"...standards for commitment are constitutional only if they require a finding of dangerousness to others or self," (cites omitted). It added, "The threat of harm to oneself may be through neglect or inability to care for oneself." (quoting from Doremus v. Farrell, 407 F.Supp. 509 514, 515). (1975)

The court determined that California's standard of "grave disability" meets the constitutional test, in that "it implicitly requires a finding of harm to self: an inability to provide for one's basic personal needs." Doe v. Gallinot, at 991.

The court cautioned, however, that the standard could easily be misapplied:

Even well intentioned persons might find that certain standards of food, clothing and shelter are "basic", even though failure to meet them does not harm or endanger a person sufficiently to justify confinement. (Id.)

To support a finding of "grave disability" it is not sufficient to conclude that a person is without food, clothing and shelter due to a mental disorder, if the failure to meet these needs has not actually resulted in danger or harm to the person. Because of the implicit, rather than explicit component of dangerousness in the California definition of "grave disability," the court concluded:

... For these reasons, there is a significant risk of erroneous application of the standard and due process requires a hearing to review probable cause for detention beyond the 72 hours emergency period. (Id.)

In the recent case, Conservatorship of Bonvenuto, 226 Cal.Rptr. 33 (1986), the California Court of Appeals further specified that a finding of "grave disability" must be based on a present condition, and not one predicted by medical witnesses. (Id. at 35). In this case, witnesses testified that the patient would become "gravely disabled" due to a propensity not to take anti-psychotic medication. The court concluded that this type of prediction was not sufficient to sustain a finding of "grave disability", and overturned the petition.

In Conservatorship of Smith, 87 Cal.App. 3d 903, the California Court of Appeals reaffirmed that if a person's refusal to seek shelter is not life threatening, such refusal cannot be grounds for a finding of "grave disability." Also, a person need not provide for her/his own food, clothing and shelter, as long as s/he possesses the basic abilities to elicit help from others.

In short, a person certified as "gravely disabled" must: 1) presently, 2) be unable to provide for food, clothing and shelter, 3) due to a mental disorder, 4) to the extent that failure to do so results in danger or harm to the person.

Discussion Questions

You are on a locked ward leading a discussion with the patients about their rights. How will you answer the following questions?

1. Sarah just arrived yesterday on a 72-hour hold. She wants to know how long she can be held here.

2. Chris lost his certification review hearing, but would still like to leave. What can you tell him?

3. Samuel says he was on a 14-day hold but the 14 days are over and he is still being detained. He wants to know why.

 

CHAPTER 5

ADVOCACY FOR CLIENTS IN RESIDENTIAL

(BOARD AND CARE) HOMES CLIENTS WHO LIVE IN RESIDENTIAL CARE HOMES (COMMONLY CALLED BOARD AND CARE HOMES) ARE ALSO ENTITLED TO PROTECTION OF THEIR RIGHTS. No person, simply by virtue of living in a residential care home, loses any of the fundamental rights and responsibilities guaranteed to everybody by the Constitution and by law.

To protect the rights of people in residential care homes it is important to be aware of four different sources of rights information.

1. Title 22 of the California Code of Regulations (formerly the California Administrative Code) 80000 et seq and 85000 et seq.

2. State and local landlord/tenant principles.

3. Local zoning laws.

4. Other laws that affect the rights of clients.

A. Title 22 of the California Code of Regulations 80000 and 85000

These are regulations which are enforced by the Department of Social Services: Division of Community Care Licensing. Not all board and care homes are regulated by the Division of Community Care Licensing. Unlicensed board and care homes will be discussed later. For specific citations please refer to the Title 22 code which is found in the Resource Guide.

Five areas of focus are: the sections of Personal Rights; Admissions Agreements and Procedures; Eviction Procedures; Needs and Services Plans; and Resident Councils.

1. Personal Rights

According to the Department of Social Services (DSS) Manual Letter No. 83-48 (22 CCR 80072):

(a) each client shall have personal rights which include, but are not limited to, the following:

(i) To be accorded dignity in his/her personal relationships with staff and other persons.

(ii) To be accorded safe, healthful and comfortable accommodations, furnishings and equipment to meet his/her needs.

(iii) To be free from corporal or unusual punishment, infliction of Disability Rights Californian, humiliation, intimidation, ridicule, coercion, threat, mental abuse, or other actions of a punitive nature, including but not limited to: interference with the daily living functions, including eating, sleeping, or toileting; or withholding of shelter, clothing medication or aids to physical functioning.

(iv) To be informed, and to have his/her authorized representative, if any, informed, by the licensee of the provisions of law regarding complaints including, but not limited to, the address and telephone number of the complaint receiving unit of the licensing agency, and of information regarding confidentiality.

(v) To be free to attend religious services or activities of his/her choice and to have visits from the spiritual advisor or his/her choice.

(1) Attendance at religious services, in or outside of the facility, shall be on a completely voluntary basis.

(vi) To leave or depart the facility at any time.

(1) The licensee shall not be prohibited by this provision from setting curfew or other house rules for the protection of clients.

(2) This provision shall not apply to minors and other clients for whom a guardian, conservator, or other legal authority has been appointed.

(vii) Not to be locked in any room, building, or facility premises by day or night.

(1) The licensee shall not be prohibited by this provision from locking exterior doors and windows or from establishing house rules for the protection of clients provided the clients are able to exit the facility.

(2) The licensee shall be permitted to utilize means other than those specified in (1) above for securing exterior doors and windows only with the prior approval of the licensing agency.

(viii) Not to be placed in any restraining device, except a supportive restraint approved in advance by the licensing agency as specified in (1) through (5) below.

(1) Supportive restraints shall be limited to appliances or devices including straps, spring release trays, or soft ties, used to support a client in a bed, chair, or wheelchair to prevent falling.

(2) The request for prior approval to use supportive restraints shall include a written order of a physician indicating the need for such restraints. The licensing agency shall be authorized to require other additional documentation in order to evaluate the request.

(3) Approved supportive restraints shall be fastened or tied in a manner which permits quick release.

(4) The licensing agency shall approve the use of supportive restraints only after the appropriate fire clearance, as required by 80020, has been secured.

(5) The licensing agency shall have the authority to grant conditional and/or limited approvals to use supportive restraints.

(ix) To receive or reject medical care, or health-related services, except for minors and other clients for whom a guardian, conservator, or other legal authority has been appointed.

(b) All clients, or their authorized representative(s) shall be personally advised of and given at admission a copy of the rights specified in (a)(i) through (ix) above and in the applicable Personal Rights sections of Chapters 2 through 7.

(c) The information specified in (b) above shall be permanently posted in areas accessible to such clients and their visitors.

(d) The licensee shall ensure that each client is accorded the personal rights as specified in this section and the applicable sections of Chapters 2 through 7.

The personal rights that belong to every resident of a board and care home under Title 22 Calif. Code of Regs. 85000 are:

(a) To visit the facility with his/her relatives or authorized representative prior to admission;

(b) To have the facility inform his/her relatives or authorized representative, if any, of activities related to his/her care and supervision, including, but not limited to notification of any modifications to the needs and services plan;

(c) To have communications to the facility from his/her relatives or authorized representative answered promptly and completely;

(d) To have visitors, including advocacy representatives, visit privately during waking hours, provided that such visitations do not infringe upon the rights of other clients;

(e) To wear his/her own clothes;

(f) To possess and control his/her own personal items, including his/her own toilet articles;

(g) To possess and control his/her own cash resources;

(h) To have access to individual storage space for his/her private use;

(i) To have access to telephones in order to make and receive confidential calls, provided that such calls do not infringe upon the rights of other clients and do not restrict availability of the telephone during emergencies;

The licensee shall be permitted to require reimbursement from the client or his/her authorized representative for long distance calls.

The licensee shall be permitted to prohibit the making of long distance calls upon documentation that requested reimbursement for previous calls has not been received.

(j) To mail and receive unopened correspondence;

(k) To receive assistance in exercising the right to vote;

(l) To move from the facility in accordance with the terms of the Admissions Agreement.

2. Admission Agreements and Procedures

2.1 Admissions Agreement

An Admissions Agreement shall specify the following:

(a) payment provisions, including the client's funding source, the disclosure of which shall be at the client's discretion;

(b) general facility policies which are intended to ensure that no client, in the exercise of his/her personal rights, in rights upon the personal rights of any other client;

(c) those actions, circumstances, or conditions which may result in a client's eviction from the facility.

2.2 Admissions Procedures

The licensee shall develop, maintain, and implement admission procedures which shall meet the requirements specified in this section.

No client shall be admitted prior to a determination of the facility's ability to meet the needs of the client, which shall include an appraisal of his/her individual service needs as specified in 85068.2.

Prior to accepting a client for care and supervision, the person responsible for admissions shall interview the prospective client, and his/her authorized representative, if any.

An admission agreement, to be legal, cannot require that a client waive any rights as a term of admission.

3. Eviction Procedures

The licensee shall be permitted to evict a client by serving the client with a 30-day written notice to quit for any of the following reasons:

(a) Non-payment of the rate for basic services within ten days of the due date.

(b) Failure of the client to comply with state or local law after receiving written notice of the alleged violation.

(c) Failure of the client to comply with the facility policies as specified in the Admissions Agreement.

(d) A needs and services plan modification has been performed, as specified in

85068.3, which determined that the client's needs cannot be met by the facility and the client has been given an opportunity to relocate as specified in 85068.3(bX3).

(e) Change in the use of the facility.

The licensee shall be permitted to evict a client by serving the client with a three-day notice to quit provided that both of the following requirements have been met:

(a) The licensing agency has granted prior written and/or documented telephone approval for the eviction. The licensing agency shall reply to a request for such approval within two working days OR failure of the licensing agency to reply within two working days shall be considered approval.

(b) The client has engaged in or is engaging in behavior which is a threat to his/her mental and/or physical health or safety, or to the health or safety of the others in the facility.

The licensee shall set forth in the notice to quit the reasons for the eviction, with specific facts including the date, place, witnesses and circumstances.

The licensee shall, upon completion of the procedures specified above, notify or mail a copy of the notice to quit to the client's authorized representative, if any.

A written report of any eviction processed in accordance with the above shall be sent to the licensing agency within five days of the eviction.

Nothing in this section is intended to preclude the licensee or client from invoking any other available remedy.

Note that refusal to take medications is not among the grounds for eviction. If a client does not have a conservator, that client has the right to decide whether or not to take medications. However, a person who is on a conservatorship may be required to take medications by his/her conservator even over the client's objections if a court has found that the client does not have the right to make decisions by reason of being "gravely disabled." ( 5357(d)). However, the conservator also has a responsibility to try to help the client maintain in a living setting which is the least restrictive of the person's independence. If the client wants to withdraw from medication use and feels he or she can maintain in the community without the medication, the client should try to negotiate with the conservator and doctor to reduce/withdraw from medications.

Another important feature of this provision is that, even if any of the grounds for eviction are present (see above in bold), the client is still entitled to a 30-day notice. The only way a client can be evicted in the shorter period (three days) is if the board and care operator requests a waiver from Licensing. Only if Licensing has not denied the request within two working days may the operator licensee give a client a three-day notice. In order to apply this exception, a client must have acted in a way that is a threat to the physical and/or mental safety of that client or others in the facility.

These provisions (30-day eviction and three-day eviction) are to provide residents with NOTICE. To actually evict a client bodily, operators must go to court under UNLAWFUL DETAINER statutes.

4. Needs and Services Plan

Every resident in a residential care facility is entitled to a Needs and Services Plan that is tailored to his/her specific needs and desires.

The Needs and Services Plan shall include:

(a) the client's desires and background regarding the following, obtained from the client or his/her authorized representative, if any:

(i) Entrance to the facility;

(ii) Special services needed, if any;

(iii) Health history;

(iv) Mental condition;

(v) Functional limitations.

(b) Any needs appraisal or individual program plans completed by a placement agency or consultant.

(c) Facility plans for providing services to meet the individual's needs identified above.

The following persons shall be involved in the development of the Needs and Services Plan:

(a) The client, or his/her authorized representative, if any;

(b) Any relative participating in the placement;

(c) The placement or referral agency, if any;

(d) The person responsible for facility admissions.

4.1 Modifications to the Needs and Services Plan

The written Needs and Services Plan specified in 85068.2 shall be updated by any of the parties (listed above) who were involved with its development, as frequently as necessary to assure its accuracy, and to document significant occurrences which result in changes in the client's physical, mental and/or social functioning.

If modifications to the plan identify an individual client service need which is not being met by the general program of facility services, the following requirements shall be met:

Consultation shall be secured from a dietitian, physician, social worker, psychologist or other consultant as necessary to assist in determining if such needs can be met by the facility within the facility's program of services.

If it is determined that the needs can be met, the licensee, in conjunction with the consultant, shall develop and maintain in the facility a written services plan which shall include the following:

(a) Objectives, within a time frame, which relate to the client's problems and/or needs;

(b) Plans for meeting the objectives;

(c) Identification of any individuals or agencies responsible for implementing and evaluating each part of the plan;

(d) Method of evaluating progress.

If it is determined that the needs cannot be met, the licensee shall bring this fact to the attention of the client and/or, his/her authorized representative, if any, and request that the client relocate.

If the client refuses to relocate, the licensee shall be permitted to evict the client in accordance with 85068.5(a).

Since regulations require the client's direct involvement in this plan, it is important that client be aware of the specifics and feel free to ask for changes. Some clients may not even be aware that such a plan exists or that they have a right to an individual plan. The home operators are obligated to make this information known to each client.

5. Resident Councils

Each facility with more than six residents shall assist its residents in establishing and maintaining a resident-oriented facility council, at the request of a majority of its residents.

The licensee shall provide space and post notice for meetings, and shall provide assistance in attending council meetings for those residents who request it.

If residents are unable to read the posted notice because of a physical or functional disability, the licensee shall notify the residents in a manner appropriate to that disability, including but not limited to verbal announcements.

The licensee shall document notice of meetings, meeting times, and recommendations from council meetings.

In order to permit a free exchange of ideas, at least part of each meeting shall be conducted without the presence of any facility personnel.

Residents shall be encouraged, but shall not be compelled, to attend council meetings.

B. What Can Be Done When a Resident's Rights Are Violated?

Although the preceding sections have shown that residents in board and care homes have numerous rights and protection, a resident may feel that his or her rights have been violated. In such a case, it is usually best if s/he can talk directly to the board and care operator or any other person who may be in a position to make the desired changes. However, if the resident feels intimidated, or does not get a satisfactory response, then an advocate can be very helpful.

C. Assistance From Advocates

Among the rights of board and care home residents is the right to receive visits from an advocate. ( 85072(a)(4)(2)). An advocate can be of help in a number of ways. An advocate can assist the resident in compiling data to substantiate a complaint, and can help a resident contact Licensing, if necessary. An advocate can also help clients get hooked up with community services they are entitled to, like public benefits and protection of their rights as tenants.

Also, an advocate may be able to give informal assistance in working out some of the problems between a resident and an operator. An advocate can help the residents feel more confident about themselves and more comfortable in asserting their rights. Sometimes, an operator may only need to be made aware of a problem or be reminded of the law in order to make the appropriate changes.

By promoting understanding and cooperation, an advocate can do much to resolve a problem before it becomes necessary to call Licensing. Many board and care home operators want to do everything possible to run their board and care homes properly, and are open and receptive to working out problems.

D. Community Care Licensing

The State Department of Social Services, under the Division of Community Care Licensing (referred to as "Licensing") is legally required to assure that licensed board and care homes are run according to the regulations. Each area's local office is listed in the phone book in the State Government listings under "Social Services Department."

1. Placing a Call to Community Care Licensing

Anyone can call Community Care Licensing if there is abuse or suspected abuse in a board and care home. The person calling can either give his/her name or can call anonymously. If the person gives his/her name, he/she can request that this information be kept confidential.

Before calling Licensing, it is important to have as much specific, concrete information as possible, including dates, times, names if possible, and a thorough description of the problem. Licensing will want to know the zip code of the board and care home. All of this information will aid Licensing in conducting their investigation. It is also important for a caller to be as calm as possible, so that the person at Licensing can understand clearly and get all the necessary information.

On the basis of a call, Licensing will then make an announced or unannounced visit. On the basis of this visit, the Licensing person will see if the complaint can be substantiated. This can be done by talking to people and by making observations. If the Licensing person determines that the complaint has substance, and it is a citable offense, Licensing will issue a formal statement which will describe the problem and will cite the regulations that are being violated.

Once a citation has been issued, Licensing will normally give the board and care home operator a chance to correct the problem before levying a fine. If the problem is not corrected in a reasonable assess a fine of between $25.00 and $50.00 for each day the violation continues.

If the problem continues in spite of the fines, Licensing can issue a Temporary Suspension Order (T.S.O.) (22 CCR 80042). If the board and care home operator appeals this T.S.O., a hearing will be set within 30 days. If the appeal is rejected, the board and care home can be shut down. Licensing will only shut down a board and care home as a last resort. To close a board and care home down can be very difficult for everyone, especially for the residents who have to move suddenly to a different place. For this reason, Licensing does everything possible to work with the board and care home to resolve difficulties.

2. Assistance From Ombudsmen

Ombudsmen have the responsibility of investigating complaints regarding elder abuse, and also the abuse or suspected abuse of any dependent adult (WIC 15630). An ombudsman can be a good liaison between a resident and licensing agencies and other governing bodies. For a more thorough description of the role of an ombudsman, see Chapter III, Overview of Related Systems: What is an Ombudsman?

3. General Legal Assistance

Additionally, clients and advocates should become acquainted with local legal services agencies to assist with landlord/tenant matters, public benefits and other legal issues. (See the Resource Guide for a list of various legal resources throughout the state.)

E. Unlicensed Boarding Houses

In addition to board and care homes which are licensed by the State Department of Social Services, there are some boarding houses which are available to clients which are not licensed as board and care homes. Therefore, the Department does not have jurisdiction for the purpose of monitoring the condition of these homes.

Nonetheless, as citizens, the residents of boarding houses are entitled to live in a dignified and healthful environment. The residents are paying for a service. The operation of these homes is therefore subject to local and state laws governing fair business practices.

Furthermore, board and care home and boarding house residents can expect protection of their rights as tenants, including the right to live in a place that is clean, safe and habitable, and the right to be protected against illegal eviction practices.

Discussion Questions

You have just met with a group of board and care residents to discuss the rights that they have. How would you answer the following questions?

1. Sharon has lived at the home for three years. She does not have a conservator. She recently decided that she could do better without her medications, and stopped taking them. A few days ago she lost her temper and yelled at the board and care operator because she thought the operator was treating her like a child. She was then told that if she did not resume taking her medication, she would have to move out. What are her rights?

2. James is on SSI. His checks arrive in his own name. Every month when he gets his check, he immediately signs it over to the board and care operator. She used to take out money for room and board and give him what was left for his personal use. Recently, the house rules were changed. The residents are now required to pay into a fund, and the operator purchases clothing and sundry items for the residents out of that fund and distributes them according to her discretion. James does not like this plan because he likes to control his own money. He is afraid, though, that if he says anything to her she will get mad and hold it against him. What can you say or do?

3. All the residents have use of a washing machine and dryer which is kept in the basement. The lighting on the basement stairway is very poor. Also, for the last two months, the washing machine has been spilling over a little, and there is always a pool of water on the floor around the machine. Several of the residents have mentioned this problem to the people who run the home, but nothing has been done. What can you suggest?

 

CHAPTER 6

ENTITLEMENT RIGHTS: SOCIAL SECURITY

(Written by Tanya Temkin)A stable and adequate income is the most basic need for people trying to live independently. However, the law does not recognize this need as a formal right. The benefits of federal, state, and local government programs such as Social Security Disability, SSI, general assistance, food stamps, etc., are available only to people who meet eligibility standards that are specific to each program.

All these benefits programs have certain things in common: any person has the right to apply for any of these benefits; any person whose application is turned down has the right to appeal that decision; and all people who are finally found to be eligible hold certain rights as recipients.

A. Social Security Disability and SSI: In General

The two major federal financial programs providing income for people with disabilities, including mental disabilities, are Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). SSI is authorized by Title 16 of the Social Security Act, and SSDI is part of Title 2 of that Act.

BOTH are administered by the Social Security Administration (SSA).

BOTH are for people who have physical or mental imDisability Rights Californiarments which:

(a) can be shown by medical evidence such as clinical findings or lab tests, and

(b) are serious enough to prevent a person from doing any substantial gainful work (i.e. earning a gross monthly income of $500), and

(c) have lasted or can be expected to last for at least 12 continuous months or result in death.

The major difference between the two programs is that SSDI is an insurance program; persons who have worked and Disability Rights Californiad Social Security payroll (FICA) taxes for a certain minimum amount of time before becoming disabled can receive these benefits. SSI, on the other hand, is based on financial need (low income and low resources), not on insurance coverage. Many people get both SSDI and SSI.

There are two major medical coverage programs connected with the SSI and SSDI programs. Medicaid (called Medi-Cal in California) pars many medical costs for people on SSI; in California, all people who get SSI are automatically eligible for Medi-Cal. Medicare is a different program, which covers people who have been eligible for SSDI checks for 24 months. People who get only SSI don't get Medicare.

B. Other Features of the SSI and SSDI Programs

(This table compares SSI in column one to SSDI in column two.)

SSI

SSDI

For people who are disabled, blind, or over age 65; no "disability" standard for aged or blind people.

For disabled people under age 65 (including blind people).

Limits on income and resources.

No limits on income or resources.

Receiving most other types of income will reduce your amount of SSI.

Receiving most other types of income will not reduce SSDI check.

Type of living situation will affect amount of SSI check.

Type of living situation will not affect amount of SSDI check.

SSI monies come from federal and state revenues -- no connection with Social Security taxes.

Money comes from Social Security (FICA) payroll taxes. Usually must have Disability Rights Californiad a minimum amount for roughly half the calendar quarters between age 21 and, onset disability, or 5 of the last 10 years.

Automatic eligibility for Medi-Cal.

Medicare coverage after 24 months of cash benefits.

Eligibility effective 1st day of the month following application.

Retroactive to 5th month after onset of disability.

Check usually arrives on 1st of month, in blue-colored envelope.

Check usually arrives on 3rd of month, in gold-colored envelope.

There is another type of disability benefit under the Title 2 program called Disabled Adult Child (DAC). DAC is for an adult person who is 18 years or older, became disabled before the age of 22, and who has a parent who is either (a) receiving Social Security retirement or disability benefits, or (b) a deceased Social Security taxpayer. A DAC recipient gets benefits based on the Social Security taxes of his/her parent. DAC claimants, like SSI and SSDI claimants, must prove that they are unable to work due to physical and/or mental imDisability Rights Californiarments.

C. More About Income and Resources for SSI

NOTE: The figures quoted in this section on Social Security benefits are accurate as of January 1997. Social Security rates and regulations are constantly changing. Please check with your local Social Security office for the most recent figures.

To get any money from SSI, both your income and resources must be within certain limits. Resources means anything you own, such as cash, liquid assets, or real or other property which you can convert to cash to use for your support and maintenance. Some common examples are bank accounts, stocks or bonds, real estate, and, business inventory. The SSI laws say that certain types of property or assets don't count as "resources," for example, a home you own and live in as your principal place of residence, or a car worth up to $4,500. [If an automobile is required for employment, medical condition or requires special modifications for a person with physical abilities, the $4,500 limit may not apply.]

As of January 1997, the limit on countable resources is $2,000 for a single person on SSI and $3,000 for a married couple on SSI. If you have more than those amounts, you can't get any SSI at all.

Income means any cash, property, goods, or services you receive during a calendar month which you can convert to cash to meet basic needs for food, clothing or shelter. SSDI is one type of income; V.A. benefits, alimony payments, gifts of food or clothing, payments of your rent or other household expenses by a third party, or workers' compensation payments are other examples of income. (Some kinds of cash or in-kind payments are not considered to be income, e.g. state renters' assistance checks and low-income energy assistance.)

The income limit for SSI depends on your living situation and your marital status. For example, as of January 1997, the income limit for a single person who lives in his/her own household is $660.40 ($20 is an any income exclusion, $640.40 is the 1997 SSI Rate). To put it another way, a single person living in his/her own household can get SSI only if s/he gets less than $660.40 of countable income from some other source. If s/he gets a monthly SSDI check for $400, s/he can get some SSI; if his/her SSDI check is $700, s/he can't get SSI because his/her income from SSDI is too high.

D. How Much SSDI or SSI Can You Get?

The amount of your SSDI check is based on how much you earned in certain years before becoming disabled. If you get DAC, the amount of your check is based on the earnings of your parent and how many other people (i.e. other family members) are getting benefits based on your parent's Social Security account. No matter where in the U.S. you live, the amount of your SSDI or DAC check will be the same.

SSI is very different. The amount of your SSI check will vary according to which state you live in. That's because SSI is really made up of two different sources of money: a payment from the federal government, and a supplemental payment from state funds. The federal portion is the same in all states. Most states, including California, pay a state supplement; the amount varies from state to state. Both the federal and state portions of SSI are raised every year.

In California, there are different amounts of state supplemental payments for people who live independently (by themselves or in shared housing), in board and care homes, or in places with no cooking facilities (as in most residential hotels which don't have kitchens). If you live with other people in a household where you get free room and board, or you don't pay your full share of either room or board, SSA reduces your SSI check by one-third of the federal amount (SSA calls this "living in the household of another").

E. What Does "Disability" Mean?

Social Security uses the word "disability" in a specific way which is important for advocates and clients to understand. No matter how long or how many times a person has been hospitalized, and no matter how "mentally ill" that person is considered to be by self or others, s/he won't get any disability benefits from SSA unless s/he can prove that:

1. S/he has a medically determinable imDisability Rights Californiarment. The imDisability Rights Californiarment must be established by medical evidence consisting of signs, symptoms, and laboratory findings. "Symptoms" are the person's own perceptions of her or his imDisability Rights Californiarments -- e.g. feeling anxious, "down", "nervous", etc. "Signs" of mental imDisability Rights Californiarments are abnormalities of behavior, affect, thought, memory, orientation, and contact with reality, as observed by "medically acceptable" clinical techniques -- most commonly by psychiatric observations and mental status examinations. "Laboratory findings" of mental disorders include, among other things, psychological test results. Usually, SSA won't find a person disabled on the basis of symptoms alone without objective medical evidence to back them up.

As you can see, SSA places a great value on the "medical model" of mental disability and the credibility of psychiatric evidence. As an advocate for patients' rights, you may have a less favorable opinion of the credibility of psychiatric reports. For purposes of assisting a client with a claim for disability benefits, however, you may have to present psychiatric reports and hospital records on behalf of your client, and you will have to treat them as valid and authoritative.

2. Because of this imDisability Rights Californiarment, s/he is unable to engage in any substantial gainful activity (SGA). "Substantial" work is activity that involves significant physical and/or mental functions; "gainful" activity is work that is generally done for pay or profit. SSA regulations presumes that a "substantial, gainful" earnings level is $500 per month (in gross not take-home pay). SSA is concerned only with the person's ability to earn that amount, not with his/her ability to survive on it.

A person who is doing SGA at the time s/he applies for SSI, SSDI, or DAC will be turned down. Most people who apply for benefits just after being released from mental health facilities don't work, but some people try to survive on marginal jobs. Advocates who assist people in such situations should advise their clients about the SGA rule. They should also be aware that even monthly earnings less than $500 might be considered SGA, although earnings of less than $190 rarely are. In some cases, SSA can be convinced that earnings equal to or more than $500 per month are not SGA. The SGA provisions discussed in this manual are relevant only to persons applying for SSI, SSDI and/or DAC. Social Security has different rules for people who go to work and perform SGA after they start to receive benefits.

In determining whether work is SGA, SSA considers these factors:

(a) The nature of the work, how well it is performed, the time spent working and whether the person gets any special consideration from the employer. IF SSA finds that the employer is "subsidizing" the person extensively with special accommodations for her disability, SSA may decide that the person is getting Disability Rights Californiad more than the real value of his/her work activity, and that his/her work is not SGA.

(b) Whether the person has to pay for disability-related items or services (e.g. psychiatric medication, psychotherapy clinic fees) in order to work. It does not matter if the person would have these expenses even if not working. These expenses are called "imDisability Rights Californiarment related work expenses (IRWE)". SSA deducts the cost of these out-of-pocket payments from the person's gross earnings to decide whether the remaining amount represents SGA. A full discussion of how SSA evaluates a person's work activity is beyond the scope of this chapter. What is important to know is that a person might not be performing SGA just because s/he is working, and that a person who earns less than $500 per month might be found to be doing SGA.

(c) Whether the person is working in a sheltered workshop.

Even if the person isn't doing SGA, the SSA goes on to determine whether a person is capable of working at a substantial gainful level. SSA's disability standards for people with mental disabilities are concerned with how extensively one's symptoms and signs interfere with one's ability to function socially. To perform one's usual daily activities independently and appropriately, to concentrate and maintain task persistence and pace, and to tolerate the stresses of a work setting without getting worse.

SSA may go on to decide if the person is too disabled to return to his/her former work. The work-related abilities s/he still has despite her/his imDisability Rights Californiarment are taken into account, i.e. her/his ability to understand simple instructions, concentrate on a task for a sustained period, and stick to a regular work schedule. If SSA decides that s/he couldn't go back to her/his previous work, it will determine if s/he is capable of doing any other kind of work. SSA also considers whether s/he has learned any skills from her/his past work that s/he can use in a simpler job involving similar skills. The person's age and educational level are also factored into a determination of whether there are any jobs s/he can do -- the older a person is and the less education s/he has, the more likely s/he will be found to be disabled.

Many mental health clients have physical and/or sensory disabilities as well as mental disabilities. SSA will consider the limitations imposed by these disabilities too.

Issues such as discrimination against mental health clients, the person's reluctance to accept a manual job, and the person's chances of being hired despite lots of job competition don't count in the disability determination process. SSA is only interested in whether the person could perform the job, not whether s/he can get the job.

3. The disability has lasted or will last at least 12 consecutive months or will end in death. If SSA decides that a person has been severely disabled for two months but is expected to improve in six months, benefits will not be granted. SSA will determine an "onset of disability" date at which point the person's condition became disabling within the meaning of the law. This onset date may not coincide with the date at which the person was first hospitalized, treated as an outpatient, or otherwise considered "mentally ill" by self or others. Frequently, people with many years of involvement in the mental health system are found by SSA to have an onset of disability date within a very recent period of time. Generally, SSI-only claimants are assigned an onset date no earlier than the date of application.

F. Dealing With the Social Security Office

Persons applying for SSI, SSDI, or DAC benefits will initially deal with SSA workers by phone, in writing, or in person. All claimants will eventually have to make a personal visit to the SSA office. Advocates and their clients should be aware that claimants have the right to:

1. Courteous and respectful treatment from staff in the SSA office.

2. File an application. SSA personnel do not have the right to refuse to let you apply for benefits. They may tell you that you are probably not eligible, and they may or may not turn out to be right; you still have the right to apply. Remember, if you file an application in writing, SSA must give you a decision in writing. If SSA does not give you a written decision but still proposes or takes action against you--you have a right to appeal.

3. Notify SSA in writing or by phone that you intend to file an application, even before you talk to a SSA worker (Claims Representative) in person. Once SSA receives your notice, it must send you a letter informing you that you have 60 days to complete an SSI application.

If you apply and are found eligible within that 60 days, you will receive benefits effective the 1st day of the month following the date of your contact with SSA.

SSA has a new policy of taking disability applications by telephone. During a scheduled telephone interview, the Claims Representative fills out the application form according to the information given by the claimant, then mails the completed form to the claimant to sign, date, and send back to the SSA office. You can file notice of intent to submit an application, have an application interview, and submit a completed application form even if you are in a hospital.

4. Have an advocate, friend, relative, or anybody else present with you when you go to the SSA office to file an application, submit requested information, or for any other purpose.

5. Request and be told the name of the person with whom you speak at the SSA office, either by phone or in person.

6. The protection of the provisions of the Federal Privacy Act of 1974. This says among other things, that government agencies such as SSA can't release information about you to anybody without your written consent, except in certain very limited circumstances.

Also, you have the right to see the contents of your SSA file, though SSA can refuse to let you see parts of it (usually the psychiatric reports or other medical evidence), if SSA thinks that showing you this information would be harmful to you.

7. Protection of Section 504 of the Federal Rehabilitation Act of 1973, which bars discrimination against disabled people in programs run or funded by the federal government. This means, among other things, that SSA can't refuse to let you complete an application if your disability interferes with your ability to read or fill out forms by yourself. SSA has to provide you with reasonable accommodations for your disability if you need them.

8. Protection of state confidentiality laws. Doctors, hospitals and clinics are not permitted to release information about you to SSA without your written consent.

9. Have lay evidence about your condition submitted by friends, relatives, the operator of your board and care home, your case manager, social workers, your peer counselor, or any other person whom you think could provide useful information to SSA.

10. Get proof of receipt from SSA of any papers you submit.

G. De-Mystifying SSA: Who Does What To Whom

Advocates and their clients can better deal with the application process if they understand not only what decisions SSA make, but who in the system is responsible for making them. The principal players you will deal with are:

1. The Claims Representative. This person works in the Social Security office, and is responsible for:

(a) Conducting the pre-application interview to determine if it's likely that you'll be eligible for SSI on non-disability grounds, in terms of resources, income, and residency.

(b) Explaining the application procedure and answering questions.

(c) Taking the SSI application on the SSA-8000 form, and SSDI application on the SSA-16 form. In most SSA offices, the Claims Representatives are specialized in either Title 2 or SSI claims. If you apply for both types of benefits, you'll probably speak to two different Claims Representatives. You'll also be asked to complete a Disability Report(SSA-3368) and, if you have a work history, a Vocational Report (SSA-3369). Depending on their individual circumstances, SSI claimants may have to fill out extra forms concerning their income and resources.

(d) Having you sign release of information forms to allow SSA to get evidence from medical and non-medical sources.

(e) Sending the file with the 3368, 3369, medical release forms, and any medical evidence or lay evidence submitted at interview, to the state agency (Disability Evaluation Service) for further development.

(f) Notifying you to submit information about how you have been supported between the time of application and present, if and when your claim is approved.

(g) Making the final decision about whether a representative payee is needed. A representative payee is a third party to whom SSA sends benefit checks on behalf of a person who is found to be incapable of handling his/her own funds. The payee is responsible for making sure that the money is spent only for the benefit of the person, e.g. for food, clothing, housing, medical and dental bills, etc. Payees will be discussed in more detail below.

The claims Representative does not decide whether or not you are disabled! That decision isn't made in the Social Security office at all, but in a state agency known as the Disability Evaluation Service, which has a contract with SSA to take responsibility for making disability determinations.

2. The Disability Evaluation Analyst works in the state agency office. The analyst is a lay person who is trained to evaluate and analyze medical and vocational information. The analyst receives the medical folder from the SSA office, and is responsible for:

(a) Sending release of information forms to each medical and lay source specified by the claimant, and following up by contacting these sources if they don't respond within a certain period of time.

(b) Scheduling consultative examinations as needed. These are required if there is insufficient information from treating sources, if the evidence is not up to date, or if there is conflicting information about the medical findings. The cost of the consultative examination is Disability Rights Californiad for by SSA.

(c) Calling the claimant for follow-up information, and to remind him/her about going to the consultative exam. The consultative doctor only conducts an examination and sends a report to the state agency, and does not make a decision on whether the applicant is disabled.

(d) Sending a Daily Activities Questionnaire to the claimant, and to others if the claimant specifies that other people may have helpful observations on his/her daily activities and, interests, and how these are affected by his/her disability.

(e) Summarizing all the medical and vocational evidence submitted, then working with one of the staff doctors employed by the state agency, to determine if the person is disabled within the meaning of the law.

(f) Writing a letter to the claimant if the claim is disallowed (turned down), explaining what evidence was considered, why it did not support a finding of disability, and the procedure for appealing the decision.

(g) Sending the folder back to the SSA office, with the Transmittal Notice (SSA-83 inside, designating whether the claim was allowed or disallowed).

The advocate and client don't speak with the staff doctor who works with the analyst. In addition to working with the analyst on the decision of whether a claimant is disabled, the staff doctor fills out certain forms specifying the claimant's type of mental disability and extent of functional imDisability Rights Californiarment. The doctor also advises SSA whether the claimant needs a representative payee, if the medical evidence suggests s/he isn't able to manage his/her own funds.

H. What to Bring to the SSA Office When You Apply?

Clients and advocates can go through this list together to check off what has been gathered and submitted to SSA. Even if you don't have all the following available at the time you first file an application, don't hesitate to go to the SSA office with whatever information you have. SSA will allow you more time to get the rest of the information.

1.Non-disability information

(a) your Social Security card or number

(b) any other Social Security number under which you've received benefits

(c) proof of citizenship or status as an alien residing in the U.S. "under color of law," (birth certificate, naturalization papers, INS forms)

(d) proof of resources:

(i) bank book or bank statements, if more than $500 in account insurance policies;

(ii) burial plot or burial fund records;

(iii) most recent assessment or tax bill on real property other than the home in which you reside;

(iv) insurance policies;

(v) motor vehicle registration;

(vi) any household or personal items worth more than $500;

(vii) any income-generating real property or equipment;

(viii) property belonging to your spouse.

(e) proof of income:

(i) earned income: last year's W-2 form, tax return if self-employed, wage stubs if currently working unearned income: any type of disability insurance payments, alimony, annuities, dividends, royalties, free food or shelter, clothing, etc.;

(ii) earned or unearned income received by your spouse;

Note: Loans are not considered to be income.

2.Disability-related information:

(a) Names, addresses and phone numbers of the doctors or therapists who have treated you or consulted with you. If you are being treated by more than one doctor, put down the name of each;

(b) Names and locations of each hospital or clinic where you've been given treatment or diagnostic tests for your condition, plus dates of treatment or tests and what types of treatment or tests you got;

(c) What medications you take, the dosage for each, and how often you take them;

(d) Names and addresses of other places where you've received services related to your disability, e.g. day treatment programs, sheltered workshops, peer counseling services, etc.;

(e) When your disabilities started;

(f) What activities your doctor or therapist has told you to avoid;

(g) Any difficulties you have during daily activities, getting along with other people, starting tasks, concentrating, completing tasks you start, getting tasks done on time, dealing with the stress of a job;

(h) Other problems you may have with movement, hearing, seeing, standing for long periods of time, handling things with your fingers, etc.;

(i) Things you used to do before you became disabled that you can no longer do because of your disability;

(j) Any problems resulting from side effects of medication, e.g. restlessness, tremor, drowsiness, poor coordination, etc.

Note: Tell SSA about all the medical problems you have, not just the ones that bother you the most.

3. Work-Related Information:

(a) Each job you've held in the last 15 years, starting with your "usual" job, including names and addresses of each employer and dates of employment (if possible);

(b) Description of the basic physical and mental duties involved in each job;

(c) Whether any of the jobs required technical knowledge or skills, use of machines or tools of any kind, supervisory responsibilities, how much writing you had to do;

(d) Any disability-related problems on the job, i.e. missed days, more sick leave, decrease or change in hours, demotion to loser position, etc.;

(e) Whether your employers gave you any special accommodations on the job because of your disability;

(f) Whether your disability caused you to stop working, and when.

4.Educational information:

(a) How far you went in school;

(b) If your disability interfered with your education in any way;

(c) Whether you received any special or remedial education;

(d) Any vocational or trade school you attended, when you attended, whether you completed the program, and if you ever used the skills that you learned there in a work setting.

I. How the Advocate and Claimant Can Work Together?

1. Both learn and understand the rights of an applicant.

2. Both reach a mutual understanding of how much the advocate can assist in terms of time and responsibility.

3. Jointly go through the list of needed documents, noting what has been submitted to SSA already and what still needs to be submitted.

4. Jointly make up a list of sources of medical information (doctors, hospitals, clinics, therapists) and other people or agencies who can submit evidence of disability.

5. Client either write down or narrate to the advocate how s/he spends a "typical" day, what the "bad" days are like, what kinds of things s/he has problems doing in terms of daily activities, getting along with other people, starting tasks, concentrating, or finishing things on time.

6. Both be careful not to be overwhelmed by these problems you describe! Peer advocates can remember from their own experience that applying for SSI can make one feel very vulnerable and self critical. As suggestion for clients when writing down the ways in which your disability affects you, keep another sheet of paper nearby on which you write down all the qualities you value in yourself, the things you enjoy doing, and the compliments you've been Disability Rights Californiad. Keep it for yourself, read it, and share it with your advocate when the going gets tough.

7. If the advocate is with the client in the SSA office for an application interview and the client has problems communicating, staying focused, understanding questions, etc., ask the Claims Representative to make a written note of this to accompany the application form. If necessary, remind the client that s/he has the right to file a written application.

8. The advocate may become the Appointed Representative for the client by completing an Appointment of Representative form (SSA-1696), which must be signed by both. This allows the advocate to submit written evidence on the client's behalf, examine and copy the contents of the client's file, and make any other request on behalf of the client. SSA won't speak to the advocate about the client's case unless a completed Appointment of Representative form is in the client's SSA file.

Note: An Authorized Representative is not the same as a representative payee! An Authorized Representative does not receive checks on behalf of the claimant or manage his/her money.

9. After the medical release forms have been signed and SSA sends the folder to the disability evaluation agency, find out which Disability Evaluation Analyst is handling the case. If the client receives anything from the state agency about going to a consultative exam, or a Daily Activities Questionnaire, the analyst's name and phone number would be on the form.

10. If a consultative exam is scheduled, both should be aware that if the client doesn't show up, the claim will be turned down. However, if the appointment is missed for "good cause", e.g. the client is in the hospital, in jail, has a "psychotic episode," etc., the advocate should call the analyst to explain the circumstances. Another exam will be scheduled later.

11. The advocate can reassure the client that the consultative doctor does not make the final decision on whether or not s/he is disabled, will not prescribe medication, will not force the client to go to a mental hospital. The client can go to the consultative exam with the advocate, a friend, or anybody else for moral support and reassurance.

12. The advocate or client can follow up by calling the Disability Evaluation Analyst to see if s/he has received responses from all the sources of disability-related information listed by the client.

13 Important! If, after signing the medical release forms at the SSA office the client is re-hospitalized, starts to see a new therapist, has change of condition, etc., the advocate or client, should notify the analyst. The analyst will send additional release forms for the client to sign, so that evidence and information from these new sources can be sent to the state agency.

J. When the Claim is Approved...

SSA will ask the claimant to come into the office for an interview, to give SSA information about what income, loans, or resource s/he has used to support her/himself between the time of application and present. If the person received cash or in-kind (i.e. room and board) loans from other people and intends to repay them once s/he receives the retroactive SSI check, s/he should submit a statement to that effect from the person(s) who made the loan(s). Remember, loans are not counted as income. When SSA figures out the amount of the retroactive SSI check, it won't reduce the check by the amount of these loans.

Once SSA has decided that the person is SSI-eligible in terms of finances as well as disability, it will figure out how much retroactive money the person is entitled to and the amount of the regular ongoing check. The checks are not issued at the local Social Security office, but are sent by the U.S. Treasury once instructions are given by Social Security's central office in Baltimore. SSA sends the person an "award letter" stating how much retroactive money s/he is entitled to and the amount of the regular ongoing check. The award letter is supposed to arrive before the retroactive check does, but that doesn't always happen. The amount of the retroactive check stated in the award letter should be compared to the actual amount of the check, to avoid potential problems with overpayment or underpayment.

If the person has been getting General Assistance (G.A.), the G.A. checks won't count as income in determining the amount of the retroactive check. However, in most cases, G.A. recipients are required to sign an agreement with the county welfare department allowing the county to be reimbursed from the person's retroactive SSI check. In these cases, SSA sends the check to the welfare department, which deducts the amount of G.A. it has Disability Rights Californiad the person since the agreement was signed. After paying itself back, the welfare department must send the person (or his/her payee) the remaining amount of the retroactive SSI check within 10 working days. (G.A. applicants who the welfare department thinks may be SSI-eligible are routinely required to apply for SSI as a condition for getting G.A. payments.)

If the person is entitled to both SSI and SSDI/CDB (Title 2), SSA will send two different award letters and two different retroactive checks. Usually the SSI check arrives first. Before sending out the Title 2 check, SSA deducts an amount equal to the total amount of SSI that would have been taken out of the person's monthly SSI checks if s/he had actually received a monthly SSI and Title 2 check in each month of retroactive payment. (Remember that after the first $20 of Title 2, SSA takes out one SSI dollar for every Title 2 dollar you get.) Basically, SSA is paying back the SSI program out of the person's retroactive Title 2 check. Some people will be eligible for SSI while they're waiting for their Title 2 checks to arrive, and will be terminated from SSI once they start to get Title 2 because their monthly Title 2 checks are too high.

If SSA thinks that the person needs a representative payee, it will say so in the award letter, and will give the person an opportunity to present evidence to show that s/he is capable of handling her/his own funds. A statement from the person's treating doctor or therapist is the most credible evidence. However, representative payees are legally required for SSI recipients who are found to be disabled due to substance abuse or alcoholism, who have been adjudicated incompetent by a court, or who are under the age of 18.

K. More About Representative Payees...

If SSA decides that the person needs a payee, the recipient can ask a person s/he knows and trusts to act as the payee. SSA itself must make an effort to find a suitable payee. A prospective payee must file a written application to become the payee. SSA's decision that a payee is needed, and the selection of a prospective payee, can be appealed by the beneficiary.

According to SSA's guidelines, SSA awards first preference to a legal guardian, spouse, or other relative who has custody of the beneficiary or who demonstrates a strong concern for the person's welfare. Friends who have custody or demonstrate strong concern get next preference. Public or non-profit private agencies or institutions that have actual custody, private institutions which have custody, and other persons who are qualified and willing to serve as payees are next on the preference list. Some counties have public payee programs for clients of the county's mental health services.

California state law is more restrictive regarding who can act as representative payees. The state's Administrative Code expressly prohibits board and care operators from serving as representative payees for persons in their care, except in "approved continuing agreements." Third parties, however, can serve as payee for board and care residents. A board and care resident is generally allowed to keep $76 for personal and incidental use, after s/he or his/her payee pays the facility operator the balance of the $648 monthly SSI check.

In determining the suitability of a payee, SSA considers the factors of the prospective payee's past and present custody of the recipient; demonstrated ability to plan for the recipient's welfare; financial assistance s/he has previously or currently furnished to the recipient the ability to recognize the recipient's needs; good interpersonal relationships between the payee and recipient; geographical proximity; and the payees financial condition and estimated reliability. SSI recipients can be representative payees for other SSI recipients, if they are found suitable.

If neither the person nor SSA can locate a qualified payee within two months, temporary direct payment can be made to the person or an interim payee. If a proper payee is not found within 90 days from the date the award is certified, direct payment must be made to the beneficiary to avoid financial hardship. SSA will continue to search for a qualified permanent representative payee.

If, after being assigned a representative payee, the person believes s/he has become capable of managing her/his own money, s/he can file an application with SSA to become her/his own payee. Again, evidence of capability from the treating doctor, psychotherapist, or case manager is the most persuasive kind of evidence. Testimony from peer counselors or independent living skills instructors can be useful in attesting to the person's money management abilities. If SSA denies the person's application to become her/his own payee, s/he can appeal that decision.

L. Appeal Rights: A Very Brief Outline

Disabled claimants for SSI and Title 2 may have their claim denied for a number of reasons, e.g. insufficient coverage for Title 2 benefits, resources too high for SSI, or a finding that the person is not disabled. This last reason is the one advocates will most frequently encounter.

A full discussion of appeal strategies and the substantive issues involved is beyond the scope of this chapter. Advocates and clients should be aware of the procedures for appeals.

1. Reconsideration.

Reconsideration is the first step. A request for reconsideration must be submitted to SSA within 60 days after the claimant receives notice of denial, which SSA presumes is five days after the date on the denial notice. The initial request can be made by phone, via letter, or on the official reconsideration form SSA-561.

If the request for reconsideration is submitted after the time limit, it will not be honored unless there is "good cause" for late filing. Some of the more common grounds for "good cause" are that the claimant did not receive the notice, that s/he was prevented from filing on time (e.g., was in the hospital and did not know s/he had received the notice until it was too late), or serious illness (e.g. the claimant's mental disability interfered with timely filing).

If appealing a finding that you are not disabled, you have a choice of requesting case review or informal conference. It is generally better to choose informal meeting because you are given the opportunity to meet with someone from SSA face to face to explain why you believe the action they took was wrong. In a case review SSA reviews your file without meeting with you, the SSA file will be sent back to the state agency, where a Disability Evaluation Analyst and staff doctor will review all the evidence already in the file, as well as any new oral or written evidence the client or advocate wishes to submit. The claimant will be sent a Disability Reconsideration Report form, in which s/he can list new sources of medical information and tell SSA if s/he has become more disabled since applying for benefits. The advocate can visit the SSA office and examine the contents of the file. Most of the time, the state agency upholds its original finding that the person is not disabled.

2. Hearing.

If the reconsideration decision is unfavorable, a hearing may be requested within the same time limits that apply for a reconsideration. Again, there are "good cause" exceptions for late filing. The hearing involves a face-to-face appearance before an Administrative Law Judge (ALJ) in the Office of Hearings and Appeals. Additional medical and/or lay evidence may be submitted at the hearing. The ALJ may call a Medical Advisor to the hearing to review the medical evidence in the file, listen to the oral testimony presented, and offer an expert opinion on the claimant's medical condition and extent of functional limitations. If there are questions about whether the claimant has transferable skills or what types of work could be done by someone with the claimant's alleged functional limitations, the ALJ may ask a vocational expert to testify. Either an attorney or a non-attorney advocate can represent the claimant at a hearing, but the claimant should always have an advocate. About half the claimants who ask for hearings win their cases.

3. Appeals Council.

If the claimant loses the hearing, this is the next step. Again, there are time limits for appealing. Review by the Appeals Council is allowed only under specific conditions, i.e. the ALJ abused his/her discretion, committed an error of law, or substantial evidence did not support the ALJ's decision. Neither the advocate nor claimant meet or talk to the Appeals Council. The Council can affirm the ALJ decision, reverse it, or send it back down to the hearings office for a new hearing.

If the person loses at the Appeals Council level, s/he has exhausted all the administrative channels for appeal. The next step is to take the case to a federal district court. An attorney with expertise in Social Security law is needed for this step.

Discussion Questions

1. Jesse was discharged from the county hospital a month ago and is living in an emergency shelter. He receives General Assistance, and has been told by his welfare worker to apply for SSI. He wants to get SSI, but doesn't want to let Social Security obtain his hospital records because he is afraid that the SSA workers will lock him up. He is also concerned about the possibility that, once he finds a place to live, Social Security will tell his landlord all about his psychiatric history. He is too frightened to enter the SSA office. How would you assist Jesse?

2. You have been in the hospital for two weeks, after being placed on a 72-hour hold and then a 14-day certification. During much of the time, you have been heavily medicated and very confused. However, you now remember that you intended to file an appeal on Social Security's decision to turn down your claim for SSI. The 60-day deadline was four days ago! What should you do?

3. Charlene has recently been discharged from a state hospital to the care of her parents, who give her free room and board and a little spending money from their retirement checks. She has been in and out of the hospital since she was a teenager, and has never worked steadily. She hasn't applied for SSI because her doctor told her that SSA wouldn't give her any money if her parents support her. Charlene would like to start getting some money of her own, especially since her medication costs $30 per month. She is thinking about taking a $500-per-month part-time job cleaning motel rooms. What strategies and/or precautions would you suggest to her?

4. You live in a board and care home, and your brother is the representative payee for your Social Security checks. You are a client at the local day treatment center. Your SSDI check is $600 per month and your SSI check is $68 per month. You would like to start receiving checks in your own name. What do you have to do to achieve that goal? If you move into an apartment with a kitchen, will you be eligible for both checks? If you move into a hotel room with no stove or refrigerator? Which check comes in the blue envelope?

 

CHAPTER 7

LEARNING TO ASSERT OUR RIGHTS

Knowing about our rights is only the first step. Exercising our rights, and helping others to do the same is sometimes harder. Client-advocates walk on two sides of the same line. We know how it feels to be "patients" or "clients" in the system, and we are also now in the position of offering a service.

A. Assertiveness, Aggressiveness and Passiveness Defined

For the purpose of the manual, we will describe three basic approaches one can take in addressing a problem: assertiveness, aggressiveness or passiveness. The three approaches involve varying degrees of give and take.

Assertiveness involves the ideal balance of give and take. An assertive person is bold enough to express him/herself, and is confident enough not to be shaken by an opposing point of view. An assertive person can hear another's objections, can weigh them and can counter those objections, or modify the original assertion. Such a modification is not based upon fear or intimidation but upon understanding and cooperation. An assertive person is able to hold onto his/her convictions, and, is also able to let go of a position which has been shown to lack merit.

An aggressive person is all take and no give. An aggressive person makes up his/her own mind and will not listen. An aggressive person may be 100% right, but may still fail in obtaining the desired objectives because s/he turns other people off. An aggressive person puts other people on the defensive and makes others become further entrenched in opposition, whether or not they are right.

A person who uses passiveness is all give and no take. A passive person is afraid of conflict and will back down even when the other person is wrong. A passive person lacks so much confidence that s/he will begin to believe others are right even when they are not.

B. Examples

1. Joanne is a voluntary patient. She knows she has the right to refuse medication. A new nurse, who does not know Joanne, is distributing medications. Joanne has been feeling groggy for the last eight hours and believes she has been taking too much medication. When the med-nurse approaches her, Joanne says she does not want to take her medication. The nurse insists that she take it.

Which of these approaches would be the best for Joanne to take? Why?

(a) She can take the medication because she doesn't want to offend the new nurse.

(b) She can ask the nurse to check her chart for the informed consent form Joanne signed on admission, which states that Joanne can withdraw her consent to medication at any time.

(c) She can tell the nurse to "shove it" and scold her for not knowing more about the law.

2. Carl is a peer advocate. He has been circulating throughout the locked unit, making contact with patients and inviting them to a patients' rights discussion in the day room. Last week, a patient began crying during the discussion group because she wanted to go home. She has been discharged now, but her doctor has left orders that none of his current patients can attend the patients' rights discussion group. Dora, one of his patients, wants very much to attend the discussion group, and a staff person won't allow it.

What of the following is the best way for Carl to proceed? Why?

(a) He can tell Dora he's sorry, but maybe next time she can attend the group.

(b) He can tell the staff person that Dora has a right to receive information on her rights, regardless of the doctor's order. If the staff person persists, Carl can meet with Dora privately and answer questions about her rights and then work with the patients' rights advocate in lodging a formal complaint against the doctor.

(c) Carl can refuse to conduct the group because Dora is not able to attend.

3. Jim is on a 14-day hold. He thinks some of the group activities are stupid. Today, he protested by refusing to open his mouth when it was his turn to speak. He also laughed at the outfit the group leader was wearing. After group, he was told that because of his behavior in group, he would not be able to use the telephone for 24 hours. Two hours later, his sister calls him on the phone, and he overhears a staff person saying that Jim can't come to the phone.

Which of the following is the best way for Jim to react?

(a) Jim can run down the hall, grab the phone and shove the staff person out of the way with his elbow.

(b) Jim can show the staff person the place in the Patients' Rights Handbook that says the right to make and receive phone calls can only be denied for "good cause." If the staff person continues to refuse, he can ask him/her to document his protest in his record, and then ask to speak to a patients' rights advocate.

(c) Jim can cry himself to sleep, because it is his only sister, and he would do anything to hear her voice.

C. Obstacles to Becoming Assertive

Many people who have been "patients" or "clients" in the mental health system find it particularly difficult to be assertive. The stakes can be very high in a locked unit or other coercive setting. Even if a client is completely in the right, and phrases a request perfectly, the fear of being misunderstood may keep a person from taking risks.

There are other things that can prevent a person from being assertive. Some of these are: lack of knowledge, self-consciousness, pressure to conform, and low self-esteem. Some clients are afraid to "cross" their doctors or the staff for fear of losing some degree of support.

One of the benefits of conducting peer/self-advocacy groups for clients is that, aside from gaining knowledge about their rights, clients are able to hear that the concerns they have are shared by other people. As clients grow more able to talk about their rights, greater confidence is likely to follow. Also clients can back each other up when put to the test. At the very minimum, one client can act as a witness for another if it becomes necessary.

Here are some basics to remember while learning to become more assertive.

1. Make direct eye contact and speak slowly and respectfully.

2. Know as many of the facts as possible before beginning. If there are factual gaps, admit them; don't guess or try to fake it.

3. Know the laws which are pertinent. Anticipate what possible arguments can be made against your position, and prepare for them. Consider changing your position only if you are given a compelling reason that makes sense. Also, know what the client's bottom and top lines are so you can enter a negotiation with a clear idea of what items the client is willing to bargain with and which are non-negotiable.

4. Don't be afraid to ask for clarification.

5. Have an idea of what results you want before starting. Don't get side tracked. Bring the discussion back to your point if someone changes the subject.

D. Description of Self Advocacy

Self advocacy is different from the traditional form of advocacy services for mental health clients. In a regular advocacy program, you would give your complaint to the an advocate, who would take the issue to the appropriate staff member for you and follow whatever due process or appeals might be necessary to attain your desired goal. The advocate would report back to you when the issue has been resolved.

In self-advocacy the goal is for you, the client, to decide what you want, find out how to get what you want, develop a plan and carry out the plan. This includes learning new skills, utilizing others to get what you want, and seeking assistance from those in a position to assist you. You may learn some of the skills necessary to successfully advocate for yourself from a patients' rights advocate. In self-advocacy the role of the advocate becomes a supportive one of helping you learn strategies and skills necessary to resolve your problem such as: Who do you approach first? How do you negotiate? The advocate may assist you in learning, listening, negotiation, problem solving, or assertiveness skills. A major goal of self-advocacy is to empower you to speak for yourself and participate in decisions affecting your life.

You need to know your counselor, case manager, doctor, conservator, and others who are involved in your treatment plan. Keep in contact with them and take an active part of your treatment plan. Keep all copies of your treatment plan, court papers, and forms together. You never know when you may need them.

There are four basic steps to self-advocacy: Definition of the problem, development of awn action plan, carrying out the action plan, and evaluation.

The first step is to define your issues and/or complaints. You need to become clear as to what the problems and goals are and how you would like to achieve your goals. Know the laws regarding your issues.

It may be helpful to write down what the problems are and what the desired solutions are to reach your goals. Select one or two issues that you would like to work on. Write them down in a clear statement of problems and how you would like to see it resolved. Make a list of the possible solutions to your problems. Discuss the pros and cons of each solution. Select the solution you feel most comfortable with.

After you have defined the issues and selected a solution for achieving your goals, you need to develop a plan for action. You will have a good idea of what the problem is, what you would like to accomplish, and how you would like to accomplish it. You need to develop an action plan to achieve your goal. You will develop steps defining how you will accomplish your goals and a target date by which each step is to be completed. This may include gathering documentation and support for your case. It may be helpful to keep a log of your activities. In this phase you may want to seek out support from peers, family members, friends, staff members, and others who are supportive of your goals. You may need to demonstrate that you plan is a workable one that should be supported by others. Part of developing a plan is making sure you have contingency plans in case you need to change your strategy to get what you want. Decide what issues you are willing to give in on, add what the minimum you are willing to accept.

The third step is putting your plan into action. Now you will carry out the steps of your action plan. You should be prepared to negotiate with staff members, your conservator, and/or your doctor, using assertiveness techniques. You may want to role-play or rehearse what you are going to say and get feed-back from others as to effective ways to approach persons in charge. This may involve meeting with key staff persons, involving the advocate, making phone calls, and writing letters. Your actions should be clear and concise with a clear statement of the problem and recommendations of how you would like the problem resolved.

Timing is important when presenting your issue. Is the person better to approach in the morning or afternoon? Is it better to approach him/her when he/she is alone? Would he/she respond better if you write him/her a letter? Never approach a situation when you are angry. You may want someone you trust to go with you for support. They can act as a witness to what is being said. During the meeting remain calm and stick to the facts. Do not become argumentative or emotionally excited. If you find you are becoming upset, leave the conversation and re-approach the situation again at a later time. It is O.K. to let him/her know how you feel, but never use personal attacks or obscenities in your discussion. Stick to the issues. If he/she changes the topic, bring it back to the issue(s) you want to discuss. At the end of the meeting, thank him/her for his/her time. Ask by what date can you expect to hear from him/her about your issue.

You need to be sure you document all of your efforts. Be sure to have a paper and pencil handy before making the call. Write down the date, time, agency, and the person you talk to. Write down your questions before placing the phone call. Write down their answers. Send a letter confirming any agreements made. Also, be certain to set a time line for achieving all agreements.

The last step is the evaluation phase. Once you have gone through the steps of your action plan, you need to evaluate what happened. You need to review what you did, how you did it, and did you accomplish what you hoped to? If you didn't accomplish what you hoped to, what steps do you need to take to be successful in getting want you want. If the solution you originally selected did not work out, you will want to look at achieving it through different means or selecting a new solution and developing a different action plan.

It is important not to give up if your first attempt to change something doesn't work out. You may have to stop your plan and try other tactics to achieve your goal, but the important thing to remember is to keep trying until you resolve your problems and get what you want.

 

CHAPTER 8

ROLE OF THE PEER ADVOCATE IN TEACHING

SELF-ADVOCACY SKILLS

Your role as a peer advocate in teaching self-advocacy skills is to assist the client in resolving his/her complaint at the lowest level, following the expressed wishes of the client.

Steps for Teaching Self-Advocacy Skills:

1. Meet individually with the client in a place where you can talk confidentially.

2. Explain that you will be asking questions, but that the person does not have to answer them. Explain that you will be filling out paper work together, that it will be kept confidential, and that the person will get a copy of all paper work. You will be keeping the records in a file and that s/he is welcome to read it.

3. Ask the person to tell you the situation in his/her own words. Ask for clarification if needed.

4. Help the person to separate the complaints into: 1) situations about which s/he is not happy but are not violations of laws and regulations; and 2) violations of laws and regulations. Be sure to consult the Welfare and Institutions Code (WIC) and the California Code of Regulations (CCR) to ensure that you are referring to the correct sections of the WIC, Title 9, or Title 22, or other applicable laws and regulations.

5. Show the person the section(s) of the laws or regulations pertaining to his/her complaint. Read it aloud and discuss how it applies to his/her situation. Give him/her a copy of it with the rest of his/her papers.

6. Develop options with the person, explaining the pros, cons and possible consequences of each option.

7. Stress that the person should try to resolve the problem at the lowest level.

8. Give the person time to think about his/her situation. If s/he is not certain what s/he wants to do, suggest that s/he think about it and contact you the next day.

9. After discussing the situation and the available options, if the person chooses to do nothing, that choice must be respected.

10. Develop a plan of action.

11. List each step in order with a target date by which the person plans to have that step completed.

12. Role play if it will help the person. Give the person suggestions as to the most effective ways of presenting his/her complaint. Phrase all suggestions positively, i.e., "It may help to say it this way," rather than "That's a stupid way of putting it."

13. Offer to be present when the person makes phone calls or talks to someone, to offer support. Ask the person what, if anything, s/he would like you to say.

14. Give the person the telephone form to fill out as s/he is making phone calls. Be sure the person documents each call: when it was made, what was said, any agreements made.

15. Assist the person in sending a follow-up letter, if needed, to re-state the agreements made. Use a business letter format.

16. Don't insist that the person do more than he/she is capable of doing. If he/she is too upset or intimidated to act on his/her own, show the person what to do by making the phone call with him/her on an extension, or use a speaker phone so he/she can learn by your example. Be sure that everything you do or say is what the person wants.

17. If you negotiate on the person's behalf, be sure to discuss with him/her ahead of time what the bottom line is. Be clear as to what is acceptable or not acceptable to the person as a solution.

18. Check-back with the person in a couple of days to see how things are going. If the original plan of action is not working, talk about why it isn't working and develop a new plan of action.

 

CHAPTER 9

PROVIDING PATIENTS' RIGHTS PRESENTATIONS

Information is a key to empowerment. Without knowledge of our rights, we cannot act upon them.

Many people on the wards of psychiatric hospitals and other facilities feel particularly powerless. It is hard to be away from familiar surroundings, families and friends. It is difficult to live in close living quarters with a large group of people who are virtually strangers. It can be rough to be in a situation in which someone else calls all the shots (no pun intended!). For these reasons, most people on psychiatric units place high value in the rights they do have. The function of dispersing information to individuals and groups is vital. Here are some basic steps to take to prepare for dispersing patients' rights information.

1. Become fully acquainted with the subject matter. It is essential to master the basic concepts and legal information that concerns our clients. In addition to the information found in this manual, the Patients' Rights Manual, published by the California Department of Mental Health, and the California Mental Health Services Act, (including sections of the California Welfare and Institutions Codes, and related regulations) are vital sources of information. You cannot expect to know everything about the law (no one does), and as you get more experienced answering questions, you will deepen your own understanding. Yet, it is important to grasp the basic issues before conducting patients' rights presentations.

2. Make the necessary contacts. For a presentation to be successful, it must be well coordinated with the efforts of certain other individuals. First, your local patients rights advocate has a key interest in what you are doing, because it closely interrelates with the responsibilities of an advocate. The Patients' Rights Advocate may also be able to offer tips on how to answer various "hard" questions, and can also share insight into local practices that may have direct bearing on our clients.

Next, you must make a contact with the hospital or site administrator who will inform you of the best person with whom to make arrangements for your presentation. The advocate may also be able to point you to the right person for this purpose. Set up a meeting with this person and explain the purpose of the presentation and answer any questions as to how you will be conducting it.

3. Agree on a time. Find out when there is a time slot available in the weekly schedule; a time when the room or space you will be using will not be occupied with any other group or activity.

4. Agree on a place. This will vary from hospital to hospital. It may be in the day room, a meeting room, or in some cases, a dining room. It should be a large enough room so that people can feel comfortable. Ask for permission to put up a small poster, where patients can see it, indicating the time, place and purpose of the presentation.

5. Make contact with the clients. Go around and make individual contact with the clients and invite them to the presentation. Explain what the presentation is about. Ask them if they have any questions or concerns about their rights that they would like to have answered. It has been the experience of some advocates that the staff will go around and inform the clients of the presentation. This is not always beneficial. It is important to establish with the clients that you do not work for the facility and are not affiliated in any way with it. Otherwise, the clients may not feel comfortable about discussing their rights. At some facilities, staff wish to be present at the presentation. Advocates have different experiences with this. Some find it beneficial. They feel it helps to inform the staff and the clients about clients' rights, and they feel that it gives clients confidence to know that not only they, but also the staff, have been fully informed. Other advocates find it more beneficial to meet with clients without staff present. They feel that clients are more confident about voicing their concerns without fear of recrimination. These advocates prefer to meet with staff separately, if necessary, to inform them of clients' rights.

6. Set up the room. Arrive a few minutes early. Go to the room where the presentation will be held and make sure it is free. You may want to move chairs into a comfortable arrangement, if this is not already done.

7. Start the group. There are various ways to proceed. After you have given a few presentations, you will find the method that is most comfortable for you. Here are some ideas:

(a) Start by introducing yourself. Tell the clients about yourself. Ask the clients to introduce themselves by name.

(b) Ask the clients if they were notified about their rights upon admission. If you are at a hospital, ask the clients if they received a Patients' Rights Handbook. If the clients have not been made aware of their rights, make a note of this fact.

(c)Ask the clients if they have any questions. This can be used as a gauge to know what the chief concerns of the group are, so that you can cover their concerns during the presentation. Some questions have quick, simple answers and can be answered immediately. Others may have very complicated answers. If this is the case, it may be useful to establish a framework within the context of your formal presentation and come back to the question once the groundwork has been Disability Rights Californiad out. Some questions may be very personal. In this case, it may be best to wait until after the presentation and discuss them privately with the client.

8. Give your presentation. It should be simple and accurate. You may wish to write out the main points for yourself on index cards. The presentation should not be too long, or else it may be difficult to keep people's attention. You will want to use your judgment as to whether you want to take questions from the group during your presentation or afterward. Answering questions during the presentation can be an excellent way of keeping the listeners involved. Also, it will make the presentation more informal and relaxed. Additionally, it may be frustrating to clients if they feel they are being "talked to" rather than "talked with." If, however, the questions come in such a way that it breaks the flow of your presentation to such an extent that it ruins it for other clients, it may be best to wait until after your presentation to field questions.

9. Miscellaneous issues. Sometimes clients walk in and out during the course of the presentation. This is not avoidable, although you may find it distracting. You may encourage people to stay, but, of course, you don't want to pressure them. Just try to "go with the flow" and do not be discouraged if some people only stay for a brief portion of the group.

Some participants may wish to discuss matters that are unrelated to the purpose of the group. To the extent possible, try to keep the focus of the discussion on the matter at hand. Be friendly, kind and flexible, but not to the extent that other clients are not getting the information they come to hear.

If you are asked a question which you are uncertain on how to answer, do not fake it. If it is a matter of getting more research, simply tell the person that you will try to find out the answer and get back to the client. If it is the type of question for which you need to know more factual information about the client's legal situation on other facts unknown to you, explain this to the client and give general examples that might apply. If possible, you may want to assist the client in finding out the missing factual information. This may be done by helping the client make phone calls or helping them consult other staff who may have access to the information.

10. Learn by your experience. No one starting out can anticipate every problem or question that may arise. Feel good about what you do well and welcome opportunities to grow and improve. Remember: "We're all in this together."

 

STANDARD "5250" FORM

NOTICE OF CERTIFICATION

Patient I.D.

The People of the State of California Concerning

_____________________________ Respondent

The authorized agency providing evaluation services in the County of ____________ has evaluated the condition of:

Name ___________________ Date of birth _____________ Sex _____

Address ___________________________________________________

Marital Status _______ Religious affiliation ____________

We, the undersigned, allege that the above-named person is, as a result of a mental disorder or imDisability Rights Californiarment by chronic alcoholism:

*(1) A danger to others.

*(2) A danger to himself.

*(3) Gravely disabled as defined in subdivision (h) or subdivision (l) of Section 5008 of the Welfare and Institutions Code.

* Strike out all inapplicable classifications.

The specific facts which form the basis for our opinion that the above-named person meets one or more of the classifications indicted above are as follows:

_______________________________________________________________

The above-named person has been informed of this evaluation, and has been advised of, but has not been able or willing to accept treatment on a voluntary basis or to accept referral to, the following services:

________________________________________________________________

We, therefore, certify the above-named person to receive intensive treatment for no more than 14 days beginning this _______ day of ___________ 19____ in the intensive treatment facility herein named ______________

_____________________ Date

Signature _______________________________

Countersignature _________________________

(Representing facility)

I hereby state that I delivered a copy of this notice this day to the above-named person and that I informed him or her that a certification review hearing will be held within four days unless a writ of habeas corpus is requested, and that an attorney or advocate will visit him or her to provide assistance in preparing for the hearing or to answer questions regarding his or her commitment or to provide other assistance.

Signature __________________________

CONFIDENTIAL PATIENT INFORMATION

See California W&I Code Section 5328

Original = Medical Chart

MR-311 (2/86) Yellow = Person's Attorney/Public Defender

[MH 1760 (1/83)] Pink = Advocate

Gldnrod = Person Certified-Personally delivered

 

INPATIENT MENTAL HEALTH SERVICES

CERTIFICATION REVIEW HEARING

Patient I.D.

Patient Name: ________________________________ Hospital Number: _______________

Certification Date: _______________ Certification Type: ___________ (Use Code Below)

Hearing Facility: _________________________ Ward/Unit: ________________

Certification Facility (if different from Hearing Facility): ____________________

Facility Representative: _______________________ Title: ___________________

Patient Representative: ________________________

***********************************************************

The above-named patient was certified for 14 days involuntary treatment pursuant to Section 5250 et. seq. of the California Welfare and Institutions Code. The Certification was on the basis of one or more of the criteria specified by law:

Danger to Self )
Danger to others ) strike out inapplicable
Grave disability )

A Certification Review Hearing was held this date to determine whether probable cause exists to continue to involuntarily detain the patient for 14 days intensive treatment on the basis that as a result of a mental disorder the patient is presently as specified, a danger to self, a danger to others, or gravely disabled (unable to provide for basic personal needs for food, clothing, or shelter).

The patient:
was present.
Waived presence in accordance
with W&I Section 5256.3.
After hearing it is determined that:
Probable cause does not exist.
Probable cause does exist.

The reasons for continued involuntary detention and the evidence relied upon to form this determination are cited below:

_______________________________________________________________

Date: ________________ Time: ____________

Hearing conducted by: _________________________ Title: ______________

----------------------------------------------------------------------------------------

Certification Code:

01) Danger to Self Only
02) Danger to Others Only
03) Gravely Disabled Only
04) Danger to Self and Others
05) Danger to Self and Gravely Disabled
06) Danger to Others and Gravely Disabled
07) Danger to Self and Others and Gravely Disabled

Distribution:

White - Chart
Yellow - Patient's Representative
Pink - Patient

cc: CCCHS Assistant Health Services Director, A/DA/MH Division

CCCHS Inpatient Mental Health Director

Hearing Officer

MR-237 (2/86)

State of California--Health and Welfare Agency Department of Mental Health

APPLICATION FOR 72-HOUR DETENTION FOR EVALUATION AND TREATMENT

Confidential Client/Patient Information

See California W & I Code Section 5328

MH 302 (3/81)

(Formerly MH 1533)

W & I Code, Section 5157, requires that each person when first detained for psychiatric evaluation be given certain specific information orally, and a record be kept of the advisement by the evaluating facility.

____________________________________

Advisement Complete

Advisement Incomplete

____ Good Cause for Incomplete Advisement

__________________________________________________

 

DETAINMENT ADVISEMENT

My name is ______________________________________

I am a (Peace Officer, etc.) with (Name of Agency).

You are not under criminal arrest, but I am taking you for examination by mental health professionals at (Name of Facility).

You will be told your rights by the mental health staff.

If taken into custody at his or her residence, the person shall also be told the following information in substantially the following form:

You may bring a few personal items with you which I will have to approve. You can make a phone call and/or leave a note to tell your friends and/or family where you have been taken.

Advisement Completed By

Position

Date

To ________________________________

Application is hereby made for the admission of __________________________

residing at _________________________ , California for 72-hour treatment and evaluation pursuant to Section 5150, et seq., of the Welfare and Institutions Code.

***************The circumstances under which said person's condition was called to my attention are as follows:

The following information has been established: (Please state with sufficient detail information to warrant the belief that the person for whom evaluation and treatment is sought is in fact a danger to others, a danger to self, or gravely disabled.)

STANDARD "5150" FORM

Based upon the above information it appears that there is probable cause to believe that said person is, as a result of mental disorder:

A danger to self A danger to others Gravely disabled

Signature and title of peace officer, member of attending staff of evaluation facility or person designated by county.

Date ______________________

__________ Time

Phone

Address of Law Enforcement Agency or Facility

Certification of Criminal Charges

(W & I) Code 5152.1, also 5152.2)

If person is not accepted for admission or is detained for less than 72 hours, notification shall be made pursuant to W & I Code, Section 5152.1.

Notification is requested as person has been referred under circumstances in which criminal charges might be filed.

_________________________________________ Signature of Peace Officer

SEE REVERSE SIDE FOR INSTRUCTIONS

MR 252 (REV. 2-87)EVALUATING FACILITY

PATIENT RECORD OF ADVISEMENT

(To be read and given to the patient at time of admission)

Patient I.D. Imprint Area

_____ California law states, "Each person admitted to a designated facility for 72 hour evaluation and treatment shall be given the following information by admission staff at the evaluation unit. The information shall be given orally and in writing and in a language or modality accessible to the patient."

(W & I Code, Section 5157(c))

My name is ______________________. My position is _________________________

California law states: "When any person, as a result of mental disorder, is a danger to other, or to himself, or gravely disabled, a peace officer, member of the attending staff, as defined by regulation, of an evaluation facility designated by the county, or other professional person designated by the county may, upon probable cause, take, or cause to be taken, the person into custody and place him in a facility designated by the county and approved by the State Department of Health as a facility for 72-hour treatment and evaluation."

(W & I Code, Section 5150)

You are being held here for psychiatric evaluation because it is our professional opinion that as a result of mental disorder, you are likely to:

____ Harm yourself; _____ Harm someone else;

____ Be unable to take care of your own food, clothing, and housing needs.

We feel this is true because _________________________________________

You can be held on the ward for a period of up to 72 hours. Your 72-hour period will begin on ________________________ at _________ am/pm.

During these 72 hours you will be evaluated by the hospital staff, and you may be given treatment, including medications. It is possible for you to be released before the end of the 72 hours. But if the staff decide that you need continued treatment, you can be held for a longer period to time. If you are held longer than 72 hours, you have the right to a lawyer and a qualified interpreter and a hearing before a judge. If you are unable to pay for the lawyer, then one will be provided free.

ADVISEMENT RECORD_______________________________ (Pt's name) is being detained for evaluation at __________________________________ after being taken into custody by ______________ on ________________ 19____.

The person has/has not received a complete advisement of what the 5150 hold means.

The person has/has not received a written copy of the advisement.

Good cause for incomplete advisement: _______________________________________

Person performing advisement: ______________ Date __________

Original: Chart -- Copy: Patient

MR-140 (9/85)