How to Force the System to Give You or Your Family Member Better Care
by
DJ Jaffe
If you or a relative has a serious mental illness, you will find it difficult to get care. Most (not all) mental health programs prefer to treat people with illnesses that are less severe. In fact, your ability to get care is often inversely related to need for it. The more severe your illness (or that of your relative) the harder it will be to get treatment.
This article was written to help you ‘commit’ the mental health system to providing care: be it housing, admission to hospital, discharge from hospital, admission to a program, whatever. While it was originally written for residents of NYC over 15 years ago, the strategy should work for everyone. (I left NYC/NYS names and numbers in, but they are most likely out of date).
This article assumes you have already tried to kindly go through all the channels, and you have hit a road-block. It is not uncommon. Doctors, day treatment programs, hospitals, government programs, etc. will all say that the family and individual should play an important part in the developing the patient’s treatment program. They will say this, until you disagree with them. Then many will say, you don’t know what is best. You don’t understand. Etc. etc.
Try to work with the hospital/doctor/social-worker/outpatient program. Do so civilly, and with compassion for the obstacles they face (no capacity, no time, too busy, etc.) but don’t let them off the hook.
What is it that you want? Be short and clear about the outcome you want
Many people who are trying to get better care or admission to a program, call someone and complain. That is the wrong approach. Do not, focus on telling whoever they are talking to what the past history has been and complaining about everyone they met. These historical stories are too complex to communicate quickly, and may or may not have that much connection to what is going on today and what you want now. The important thing, before setting out, is to understand exactly what you want to happen and to communicate that shortly and succinctly.
Ex. “I am calling because I want you to help get my brother into the hospital” is better than “I’ve tried to get my brother in the hospital and they told me such and such and then such and such.” Be very clear in your head what you want to happen and start there. “I am calling because my son/daughter is danger to self or others and needs your help to get him/her into Assisted Outpatient Treatment” That is better than calling and giving the history: “My brother was admitted to the hospital three years ago and he has been in and out and the social worker told me….” Be short. Be clear about what you want.
Turn the camera on the official/doctor/social-worker/ you are talking to. The problem is theirs. Make sure they understand that. Tell them: “It is your responsibility to do X, Y, and Z. What are you going to do about that?” and then be silent until they answer. Do not fill the awkward silence. Let them feel it. Make the issue the fact that they didn’t do what they have to do. Don’t make yourself the issue.
Be prepared: Have a list of everyone you’ve talked to, dates, and their complete contact information. If the person you are talking to will intervene on your behalf, you want to be able to give him or her this information instantly, not ‘get back to you’. So have the info ready.
Learn about Assisted Outpatient Treatment
If you believe you or your relative could benefit from enrollment in Assisted Outpatient Treatment, review the documents at mentalillnesspolicy.org to learn how to access the program.
Fight harder, be more assertive
If being kind gentle and compassionate doesn’t work, you may have to go to fight harder. Many people worry that if they fight harder for better care, they will “take it out on my relative”. That is not true for several reasons. First of all, they’ve already denied the treatment you want, so there is little more they can do. Secondly, now that you are escalating the incident, they know they are under microscopic attention. They are more likely to behave properly than improperly. You have little to lose.
If you want a hospital, doctor, day treatment program, government official, etc. to do something they are not doing, you may have to fight harder and be more assertive and less polite than you would otherwise want to be. It is unfortunate but true. The squeaky wheel gets the oil.
Complain to everyone in the chain of command
Do not be worried that they will “take it out on your relative because you are making a stink. They will get worse care if you do nothing, better care if you do something.
A hospital doctor reports to a director of the unit, who reports to a director of the department, who probably reports to the chief officer or chief medical officer of the hospital.
A Social Worker in an outpatient program usually reports to a Program Director who reports to the Chairman of Psychiatry at the affiliated hospital, who reports to the Hospital Director. A Case Worker at a residence reports to the Residence Director. The theory is the same.
If your problem involves a government agency such as Social Security or Welfare, ask the individual for the name of their boss. Chances are your Case Worker reports to a Team Leader who reports to the head of that office who reports to a Regional Director who reports to the head of the department. You should follow the same procedure outlined above. Send a letter to the top guy, with copies to all the employees under him, all the officials over him. With Medicaid, social security, etc. you have other legal rights.
If you have been denied social security benefits, you have the right to appeal. Call 1 800 772-1213. When you finally get what you want, write a letter, cc: everyone, thanking them for their help in resolving the matter, even if they had nothing to do with it. You made them aware of the problem, it’s only fair you make them aware of the resolution of it.
Complain to the top person and cc: everyone under him, and all the officials over him.
Following are the steps you should take to get the action you want. You should take all seven of them simultaneously. But first, make sure the action you want (admission, release, change in medication, change in doctor, etc.) is really in the best interests of the patient. Discuss your ideas with others. Once you are convinced you are right, discuss it with the doctor, social worker, official, etc., who is in charge. Try and make them see it your way.
Make everyone understand that you are not going to go away if they blow you off.
1. Write a letter to the person’s boss. Or better yet, their bosses boss. You have already tried to get the person to do what you want and they won’t. So now you have to go over their head. In a hospital, the Doctor reports to a Unit Chief, who reports to the Chairman of the Psychiatry department, who reports to the Hospital Director. Write to the top guy at the hospital and send a copy of your letter (cc:) to everyone below him. You are wasting your time if you do not deal with the top guy right off the bat. No one likes to have someone complain to his or her boss. But that is what you have to do. He will probably not call you back, but because you have sent a copy of your letter (cc:) to all the people under him who are responsible, you can be sure that one of them will get back to you before the boss gets to him.
If you are a member of the National Alliance on Mental Illness, identify yourself as a member, explain the problem and what you want done about it in detail. Send your local National Alliance on Mental Illness (NAMI) a copy of the letter cc:, too.
2. Most hospitals have a Patients Rights Coordinator. Ask for his or her name and complain to her on the phone immediately, and in writing by sending a copy of the letter above. Make sure everyone knows that you are going to the Patients Rights Coordinator.
3. Mark on the letter (cc:), that you are sending a copy to your state “Protection and Advocacy (P&A) Program and ask them for advise. P&A programs are charged with investigating patients rights problems at state and city run facilities. (in NYS: The NYS Commission on Quality of Care for the Mentally Disabled. Suite 1002, 99 Washington Ave. Albany NY 12210-2895. NY Lawyers in the Public Interest, 30 West 21st St. NYC 10010 (212-727-2270); Mental Health Law Project (212) 645-7244)
4. Mark on the letter (cc:) that you are sending a copy of it to both your city, county, and state Commissioners of Mental Health. They regulate the programs that serve the mentally ill. In other words, they are the bosses of the hospital/program directors.
(This may be dated info: In NYS Commissioner of Mental Health, 44 Holland Ave., Albany, NY 12229. Also send to the Deputy Commissioner Quality Assurance Division; Deputy Commissioner Clinical Services Support Division; and, Associate Commissioner, Regional Operations and Community Services, and your regional OMH Director. ) (In NYC contact: NYC Dept. of Health and Mental Health (Call 311 for more recent contacts (93 Worth St., NY NY 10013, Assistant Commissioner of your borough office of the NYC Dept. of Mental Health. Following are their (dated) names: Brooklyn – Richmond – 16 Court St., Brooklyn, NY 11201 Asst. Commissioner – John Palmer (718) 643-4620 Bronx – 93 Worth St., Rm. 603, New York, NY 10013 Asst. Commissioner – Arnold Korotkin (212) 566-1902 Queens – 93 Worth St., Rm. 815, New York, NY 10013 (212) 566-4826 Asst. Commissioner – Rochelle Spikler Yates Manhattan – 49-51 Chambers St., Rm 720 New York, NY 10007 Asst. Commissioner – Nitza Monges-Ellili, D.S.W. (212) 566-7248 –
4 . Also call all the following numbers and make your complaint. They are Patient’s Rights Hotlines run by various organizations. The hospital or program may have an ombudsman you can contact. (This may be dated. In NYS: PATIENTS RIGHTS HOTLINES SPONSOR (212) 316-9393 Patient’s Rights Hotline (212) 502-0833 NYS Dept. of Health (Hospital Complaints) (518) 445-9989 (Collect on weekends and after hours.) (212) 727-2270 NY Lawyers in Public Interest (518) 473-7378 NYS Comm. on Quality of Care
The object of all this is to make the institution or official realize that you are not going to just fade away and let them give your relative what you consider to be inadequate care. You must send the boss a letter, cc: it to all the people under him, all the government officials over him. It may seem like overkill, but it does work.