Advocating for a Loved One or Yourself
When your loved one goes to the hospital (on their own or by you, medical transport, or Crisis Services and/or the police), you will need to be familiar with “Patient Rights” and “In An Emergency” It can be a frightening, painful experience for both patients and families if they do not know what to expect. Further, it is possible that a trip to the hospital may not result in admission if patients and families are not strong advocates when they believe hospitalization is necessary.
Be present and make clear you are there to help and support as part of a recovery team, even if your loved one is agitated and does not sign a HIPAA waiver form to authorize communication from the providers to you. Be sure to see “Being Prepared” so you are ready to provide medical history and understand as much as possible how the process works.
Your loved one’s actual time with a doctor is often very limited. For this reason, written information and questions are important (they can be left for later review), as is establishing a relationship with nurses, aides and other staff. Nurses can help with many things such as communication between doctor visits, getting an appointment, and providing you education and information about medications, side effects, etc. This applies as well to staff in busy outpatient clinics after hospital discharge.
A patient cannot be discharged until there is a plan in place for follow-up care, including treatment and housing. A social worker will be assigned, usually within 24 hours, to prepare the plan for discharge. Let the hospital know at the time of admission that you want to speak to the social worker. It is essential that you connect with her or him early on to be sure they have accurate and complete input from you about your loved one’s situation, needs, and concerns. If your loved one cannot return to the family home, it is very important to say so from the time of admission—don’t wait until a discharge plan assumes the patient will have housing with you. Also, let the hospital staff (in admissions and on the floor, as well as the social worker) know that you want to be notified before your loved one is discharged or moved to another facility.
There is a lot of pressure on hospital staff to discharge at the earliest possible time. If you are concerned that discharge is being planned too soon following admission, be sure to raise your concern—and relevant documentation—with the treating doctor and nurses. It may be helpful if you can suggest other options you feel may be more workable.
If your loved one is having problems while an inpatient, contact the head nurse or nursing supervisor. If the issue is not satisfactorily addressed, then contact the facility’s Chief Medical Officer or Executive Director. You might also ask if there is a Patient Advocate Office or Ombudsman, e.g. at a hospital.
One of the most important documents that can help put you in the loop as part of your loved one’s recovery plan and supports is a Health Insurance and Portability Act (HIPAA) waiver that authorizes treatment staff to share information with you. Request one, or bring one that your loved one has signed and dated in advance. The patient can revoke the waiver at any time, but having one in advance may help move communication along more quickly.
Be aware that if you provide information to a provider, they may share that information and its source with the patient. In that case, your loved one may become angry at you so you must weigh that with the benefit of the provider having information to better understand the patient’s treatment needs.
Housing and Assisted Outpatient Treatment (AOT) – SPOA (Single Point of Access) https://www2.erie.gov/mentalhealth/index.php?q=single-point-access-spoa
Individuals at high risk of re-hospitalization may be eligible for AOT if they meet certain criteria—three hospitalizations inside of two years, and/or demonstrated incidents of risk of harm to self or others. A provider or family member may apply for a loved one’s evaluation for eligibility, however a doctor or treatment provider typically files the application.
Placement for housing and referral for AOT is authorized under the county Department of Mental Health through the Single Point of Access (SPOA) office. AOT is voluntary, court supported treatment which is part of Kendra’s Law. There is an acute shortage of intermediate level care beds in WNY. There is also a legal requirement that people be placed in the least restrictive setting possible, so it can be a real challenge for families to advocate when they feel a higher level of care is needed than SPOA offers. The prescribing doctor specifies the level of care an individual needs. Be sure to discuss with the doctor and the social worker preparing the discharge plan what you feel is needed so that the doctor, if they agree, can be sure to specify the appropriate benchmarks for care. Even so, the wait for housing can be long and frustrating, and there may be pressure on the family to try lower levels of care than AOT.
Health Insurance Plan
Insurance companies also have a role in determining what types and level of care will be requested or approved for your loved one. You may be denied certain requests at which point you will need to contact the insurer’s member services to present your concerns and possibly file an appeal. This is a tedious, wearing process, but it can be a critical piece of getting your loved one the care they may need.
When Your Loved One Decompensates
Often with Serious Persistent Mental Illness (SPMI), decompensation can occur if your loved one is not following a treatment plan, stops taking needed medications, begins using or abusing other medications or substances, or experiences stress or trauma, or for other reasons. This decompensation is often first seen by the family before the onset of a new illness episode that, if not addressed, can lead to re-hospitalization and a reversal of progress made. You will need, at that point, to assess whether to contact the provider, if known, with your documented signs of decompensation (see HIPAA and risks above) and try to get them help—a medication adjustment, more frequent counseling, etc. If the police need to be called, request CIT trained officers and be clear when you place the call that (1) there is a mental health issue, and (2) whether you feel the person is at immediate risk of harm to her/himself or others, or (3) they have a weapon. Click here to learn more about how to handle an emergency.
If criminal charges occur, see If Your Relative is Arrested in the Legal & Criminal Justice section.
As you become more familiar with the many systems that affect families coping with mental illness and more comfortable in the role of advocating for your loved one and family’s situation, and beyond coping with crisis, you may be interested in more information about advocating for better systems, policies, and services. This is part of the strength of the NAMI collective voice. We are stronger when we are not alone!
Making a Complaint about Treatment or Care
At times individuals with mental illness or their families may find their care is unsatisfactory. They may have been treated disrespectfully, refused necessary services or admission to the emergency room, been discharged prematurely, or been unable to reach the necessary professional staff. Their care may be inappropriate (wrong program or treatment), and even rising to the level of abuse (e.g. unexplained injuries). In some cases, an individual may simply get “lost”, or “fall through the cracks” in the complex system of care. Your loved one has the right to quality professional care. When that standard isn’t met, you may need to file a complaint to address the problem.
Individuals should be aware that abuse may come in different forms: physical, sexual or verbal. A doctor, therapist or any other staff should not touch or talk to you, regardless if consensual or not, in any sexual manner. These actions are never part of treatment and medical and other professionals are forbidden by their code of ethics to engage in such activities.
If abuse occurs, the individual or family should report it immediately. Abuse is not the fault of the individual. Though the process may take some time to resolve, perhaps even legally, do not get discouraged.
How and When to Make a Complaint
In most cases, it is best to complain first to the people most directly involved with the problem. This will most often ensure a quick solution and give the impression that you are less interested in casting blame and more interested in solving the problem.
If you have a strong reason not to complain to the persons directly involved, for example, when this approach has been unsuccessful in the past or if you believe it poses some risk to the patient, complain to the supervisor or person responsible for the staff directly involved in the complaint.
Serious concerns or complaints that are not resolved or not responded to for some time should be taken to persons higher up in the organization. Issues that are life threatening or involve the possibility of patient abuse should generally be taken directly to higher authority.
Consider contacting someone outside the agency if you find that you are not getting a response from the agency or State OMH. See the list at the end of this section.
If you make a complaint to more than one agency, or more than one person in the agency, let the person know you have spoken to other agencies and/or individuals.
To make a complaint:
- Identify the problem(s). Be clear, concise, and specific.
- Describe in sufficient detail the problem, incident, or condition.
- Be precise. Give names, days and dates. Keep a journal or log of conversations, phone calls, and keep copies of correspondence.
- Give possible solutions. Be realistic in what you want to achieve. Be willing to compromise on less important items.
- Develop a plan of action. When you make the complaint, request a response on or by a specific date.
- When possible, follow “the chain of command.” Contact the highest authority possible in emergencies.
- Be persistent. Follow through. Indicate that if you don’t receive a satisfactory response, you will contact others. Then do it.
- Be polite. Make your point but don’t be insulting.
- In letters, be sure you include your return address and telephone number.
- Avoid blaming if possible.
- Try complaining first in person or by telephoning. If the problem isn’t taken care of, write a letter.
- Organize your material. Make a list or outline of issues you want to discuss in a phone call, meeting, or letter.
- In a phone call, make sure you are speaking to someone who can help. Be sure to get names and titles and make note of them with dates.
- Write thank you letters when someone has resolved your complaint.
If you are unable to resolve a problem through these channels, contact NAMI Buffalo & Erie County’s Helpline (716-226-6264, option 1) for possible additional support and referral.
Agencies/Organizations/Persons to Contact
Complaints should first be directed to the involved staff at the agency. In a serious or urgent situation, or if your complaint is not addressed, first, during normal business hours, call the Director or Executive Director of the hospital or agency. If you cannot get the concern addressed or believe that it is very serious, you may want to report it to one or more of the following government oversight agencies.
Government Oversight Agencies
Mental Health Advocates of WNY
NYS Office of Alcoholism and Substance Abuse
450 Western Ave
Albany, NY 12203
Complaints/client advocacy 800-553-5790
Division of Quality Assurance-Performance Improvement 518-485-2257
Commissioner: Arlene Gonzalez Sanchez
Click on A thru Z index and then go to “Patient Advocacy”
NYS Office of Mental Health (OMH) – Western Field Office
737 Delaware Ave, Ste 200
Buffalo, NY 14209
NYS Office of Mental Health (OMH)
Office of the Commissioner: Ann Marie T. Sullivan, M.D.
44 Holland Ave, 8th flr
Albany, NY 12209 Family Liaison Bureau
Customer Relations Service 800-597-8481
(Gives general information and will patch you through to legal counsel.)
NYS Department of Health
Empire State Plaza
Corning Tower, Rm 1911
Albany, NY 12237 or
584 Delaware Ave
Buffalo, NY 14202
Adult Care and Assisted Living Complaints
Hospital and Diagnostic and Treatment Center Complaints
Office of Managed Care Complaints
800-206-8125 (includes commercial health plans and Medicaid)
Professional Medical Conduct Complaints
Office of Professional Conduct
NYS Justice Center for the Protection of People with Special Needs
518-549-0200 General/Executive Office
855-373-2122 Report Abuse – Vulnerable Persons Central
855-373-2124 Report a Death
161 Delaware Ave
Delmar, NY 12054-1310
Information and Referral Line 800-624-4143