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Family Participation
Rights and Guidelines

DON'T GET LOST IN THE SHUFFLE

Families are not to blame

Ask what you can do for your family member

Keep a list of questions to ask the psychiatrist. 

Know your rights. Protect your family

.


HIPAA (Health Insurance Portability and Accountability Act) is often used by mental health providers who don't fully understand its purpose and limitations, to completely block communication with family members.  These U.S. Department of Health & Human Services guidelines clarify and give examples of  sharing mental health information with family members. This document can be used as a basis to open a dialog with providers about when and what information can be shared using HIPAA as it's meant to be applied. HIPAA Privacy Rules & Sharing Information related to Mental Health

Here is a guide from the family point of view.
Understanding What HIPAA Means for Mental Illness

Families are often shut out even when people who have mental illness sign waivers.

If your family member regularly signs waivers, make sure they sign a new waiver each time they enter a new facility. Most waivers need renewing each year.

Strategies if a Family Member Does Not Sign a Confidentiality Waiver

  1. Mental health professionals can't talk with you about your family member's situation without a confidentiality waiver.  However, you can talk with them or send them information.  Your historical memory of the illness and your relative is valuable to treatment and you should be keeping a diary. It's imperative to consider requesting confidentiality to not share this information with your relative.
     
    • If you know or suspect your family member is in a specific facility and a waiver has not been signed, you can send  a letter detailing your relative's history, different characteristics you've noted about their illness, medications etc.
       
    • You may also call the clinicians and give them information over the phone, but limited resources in the mental health system may make them difficult to reach in person.
       
  2. You can ask the treating psychiatrist questions about
  • "patients with symptoms similar to your relative's,"
  • how families can help in situations where patients are ________.

    These types of questions do not conflict with most confidentiality laws. If the treating psychiatrist is not helpful, ask questions of another psychiatrist on the treatment staff.

Family Participation
Statutory Rights & Guidelines

The following is a summary of current California Law prepared by NAMI-California
For additional information, refer to the statues cited, or consult an attorney.

Statement of Policy
Families of clients in mental health facilities should be encouraged to participate in the assessment, treatment and aftercare planning process for each client, consistent with the best interests and wish of the client.

  1. The right [of a spouse, parent, child, or sibling] to be given notification of the client's presence in a 24-hour facility, unless the client requests that this information not be provided. [Cal. Welf. & Inst. Code 5328.1]
     

  2. The right to be given information regarding the diagnosis, prognosis, prescribed medication and side effects, and progress of the client, if authorized by the client. If the client is initially unable to authorize the release of this information, daily efforts shall be made to secure the client's consent or refusal of authorization.
    [Cal. Welf. & Inst. Code 5328.1]
     

  3. The right to have the family make reasonable attempts to notify the immediate family of the client's admission, release, transfer, serious illness, injury or death, unless the client requests that the information not be provided.
    [Cal. Welf. & Inst. Code 5328.1(b)]
     

  4. The right to see and receive copies of information and records regarding the client, with the consent of the client and approval of the treating physician, psychologist or social worker. [Cal. Welf. & Inst. Code 5328(b)]
     

  5. The right to a copy of the written aftercare plan when the client is discharged from an inpatient psychiatric facility, when designated by the client. (effective January 1998)  [Cal. Welf. & Inst. Code 5622, 5768.5]
     

  6. The right to have removed from the client's record any information provided in confidence by the family, prior to release. [Cal. Welf. & Inst. Code 5328(b)(d)(j)(k), 5543]
     

  7. The right to have removed from the client's record any information provided in confidence by the family, prior to release. [Cal. Welf. & Inst. Code 5328(b)(d)(j)(k), 5543
     

  8. ]The right to be given required information concerning the administration of convulsive treatment or psychosurgery, if authorized by the client. [Cal. Welf. & Inst. Code 5326.6(b), 5326.7(c)]
     

  9. The right to receive copies of public information, including licensing and other reports. [Cal. Gov't Doc 6250 et seq.]
     

  10. The right to visit the client every day, if desired by the client. [Cal. Welf. & Inst. Code 5325(c)
     

  11. ]The right to have confidential phone calls with the client and to mail and receive unopened correspondence, if desired by the client. [Cal. Welf. & Inst. Code 5325(d)&(e)]
     

  12. The right to provide clothing, personal possession and a reasonable sum of money to the client for us in the facility, if desired by the client.  [Cal. Welf. & Inst. code 5325(a)]
     

  13. The right to participate in the treatment and rehabilitation planning of the client, as a source of information and support. Included in the participation is the identification of service needs, and advocating for, and coordinating the provision of these services, as appropriate.
    [Cal. Welf. & Inst. Code 5600.2(a), 5600.4(c)]
     

  14. The right to be advised of the time and place of certification review hearings, judicial review, conservatorship proceedings, unless the client requests that this information not be provided.  [Cal. Welf. & Inst. Code 5256.4(c), 5276, 5350.2]
     

  15. The right to be appointed conservator or to nominate a conservator subject to the priorities and preferences in the Probate Court. [Cal. Probate Code 1810-1813]
     

  16. The right to have the first priority for conservatee placement be a facility as close as possible to the conservatee's home or home of a relative. [Cal. Welf. & Inst. Code 5358(c)]
     

  17. The right to submit a complain regarding abuse, unreasonable denial or punitive withholding of rights concerning a resident in a license health or community care facility to a clients' rights advocate for investigation.  [Cal. Welf. & Inst. Code 5520(a)]
     

  18. The right (unless found not to be acting in good faith) to be immune from civil or criminal liability, penalty, sanction or restriction for participating in the filing a complaint of providing information to the patients' rights advocate.  [Cal. Welf. & Inst. Code 5550(a)]
     

  19. The right to be informed of the telephone number by the facility of where to file complaints with the Department of Health Services, Licensing and Certification Program.  [Cal. Health and Safety Code 1288.4]  Profession licensing boards and other regulatory and enforcement agencies may also be contacted to register complaints about the facility or personnel .
     

  20. The right to not have the client discriminated or retaliated against for the family members' participation in any advocacy activity.  [Cal. Welf. & Inst. Code 5550(c)]

Sources

  • Cal. Government Code,
  • Cal. ProbateCode,
  • Cal. Welf & Inst. Code,
  • Title 22 Cal. Code of Regs.,
  • Joint Commission on Accreditation of Healthcare Organization Standards,
  • California Association of Hospitals and HealthSystems Consent Manual.

NAMI California
1851 Heritage Way, Suite 150
Sacramento, CA 95815
916-567-0163
email: nami.california@namica.org
website: www.namica.org

October 1997, Updated July 2017