National Alliance on Mental Illness
page printed from NAMI Indianapolis
ADVOCACY STEPS TO RESOLVING A PROBLEM
By Clare Skeehan, NAMI
A word of caution from one consumer to another: It wouldn’t hurt to talk your problem over with an unbiased person whose judgment you trust before you go to a lot of trouble just to make sure your complaint is a reasonable one. Our symptoms can sometimes make something that is a normal problem — something that everyone needs to accept and learn to deal with, seem like the worst injustice we’ve ever encountered! On the other hand, if you take steps to eliminate a real problem that a lot of other consumers are experiencing, you are making things better for us all, and that’s a good thing. Good luck!
1. LEARN ABOUT YOUR RIGHTS AND MAKE SURE YOUR EXPECTATIONS ARE REASONABLE: Learn about your rights as a Hoosier Assurance Plan (HAP) enrollee by checking out the Serving the Hoosier Assurance Plan through Education (SHAPE) web site, www.in.gov/fssa/shape. The toll‑free number was disconnected August 2002. Call Indiana Protection and Advocacy Services toll-free 1 800 622‑4845 and ask them to send you a copy of their booklet Your Rights as an Adult Receiving Treatment in a Mental Health Facility in Indiana. The Indiana Division of Mental Health and Addiction (DMHA) recognizes certification by several independent, non-governmental agencies that evaluate healthcare and rehabilitation facilities nationwide. Most providers licensed by DMHA are accredited by either the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) or CARF - The Rehabilitation Accreditation Commission. Their web sites are www.jcaho.org and www.carf.org. Check out the National Self-Help Consumer Clearing House web site, too, www.mhselfhelp.org
2. FOLLOW INTERNAL COMPLAINT RESOLUTION PROCEDURES: Ask your Primary Care Coordinator (PCC) for a list of your provider’s procedures. You should not have to tell them why you want the list. If you cannot follow the steps on the list by yourself, organizations that advocate for people with mental health or addiction problems can help you follow them. Two such consumer advocacy organizations are your local Mental Health Association (MHA) and KEY Consumer Organization, Inc. (toll-free 1 800 933‑5397). Or call your local
3. CONSUMER SERVICE LINE: If following your provider’s procedures does not resolve the problem, call the CSL hotline toll‑free 1 800 901‑1133 and file a complaint. They will record your complaint for DMHA and the provider must respond to it.
6. ADULT PROTECTIVE SERVICES: If your problem involves the alleged abuse, neglect, or financial exploitation of a disabled adult, call the APS hotline toll‑free 1 800 992‑6978. They will give you the telephone number for your county’s APS office.
8. SOCIAL SECURITY ADMINISTRATION: If you receive SSI or SSDI and your problem is with the provider employee appointed as your representative payee to help you manage your benefits, call SSA toll‑free 1 800 772‑1213. It is an automated answering system. Select either the options that connect you with an SSA representative, or the ones that give the address and telephone number of your local SSA office.
9. MEDICAID: There is no hotline for Medicaid problems. They handle the appeal process locally. If they deny your appeal you have to reapply which takes about 90 days. The best way to avoid problems is to impress upon your Primary Care Coordinator (PCC) how important it is for them to take good care of your Medicaid needs. This is especially important if your PCC is your SSA representative payee. Your PCC should be aware of when your annual redetermination is coming up. They should help you to submit all of the documentation your Medicaid Case Worker requires to prove that you are still eligible. They should also be aware if your resources are approaching $1,500 for a single person or $2,250 for a married couple. Then they can help you spend some of it on things you might need like clothes, furniture, car repairs or reducing your credit cards balances. This way you will continue to be eligible for Medicaid coverage. They should report all of your incurred expenses, paid or unpaid, to your Medicaid Case Worker so your spend down is met each month. You can follow the steps listed above to complain about inadequate provider services if your PCC isn’t handling your Medicaid needs well enough to help you avoid problems.
10.MEDICARE: Medicare covers injectable drugs but does not cover medications you administer to yourself. If you have a problem being billed for something Medicare should have paid for call AdminaStar Federal toll‑free 1 800 622‑4792. Learn about your Medicare patient’s rights by calling Health Care Excel, Inc. toll‑free 1 800 288‑1499. They can send you a booklet or take complaints about quality of care issues. Call toll-free 1 800 633‑4227 with general questions.
11.JAN, VR, EEOC: If you have a job with your provider, you have the same rights to accommodation based on your psychiatric disability as you would with any other employer. Call the Job Accommodation Network (JAN) toll‑free 1 800 526‑7234 for reasonable job accommodation ideas. If you are a client of Indiana Vocational Rehabilitation Services (VR), you can ask your VR Counselor to advocate for you with your employer to help you keep your job. If your employer refuses to approve your request for reasonable accommodations or if they fire you because of something having to do with your disability, you can file a discrimination complaint. Call either the ICRC (step 7 above) or the U.S. Equal Employment Opportunity Commission (EEOC) toll‑free 1 800 669‑4000. You leave your name and telephone number for them to call you back.
12. HUD: If you live in housing managed by your provider, you have the same rights to accommodation as you would with any other landlord. A publication called A Handbook on the Rights and Responsibilities of Tenants with Certain Disabilities: Psychiatric, Alcohol or Drug Addiction, and HIV/AIDS gives reasonable housing accommodation ideas. IPAS (step 5 above) and ICRC (step 7 above) both have this publication. If your landlord refuses to approve your request for reasonable accommodation or if they evict you because of something having to do with your disability, file a ‘fair housing’ discrimination complaint. Call either ICRC (step 7 above) or the U.S. Department of Housing and Urban Development (HUD) toll‑free 1 800 669‑9777.
13.PRIVACY VIOLATIONS: Under Federal HIPAA regulations, we have a right to privacy concerning our medical information. If you feel your privacy rights have been violated, there are two things you can do. You can make a privacy complaint to the Privacy Officer at your clinic or at the hospital of which your mental health or addiction system is a department. You can also make a privacy complaint to the U.S. Department of Health and Human Services office in
14.DISCRIMINATION OR DENIAL OF REASONABLE ACCOMMODATION: Under Federal ADA regulations, we have the same rights to reasonable accommodation for our disabilities as people with other types of disabilities do. For example, you have a handicap plate or placard but your clinic doesn’t have any handicap spaces in its parking lot, or won’t enforce parking regulations for the handicap spaces it does have. Or your memory is poor because of your mental illness and you’ve already done everything you can to compensate for it, but your case manager refused your request that he or she call you to remind you the day before you have an appointment with them. The availability of handicap parking and being reminded of your appointments are ways they can give you access to treatment despite your disabilities. You can make a discrimination complaint based on their neglect or refusal to give you reasonable accommodation of your disability. You can make the complaint to the ADA Compliance Officer at your clinic or hospital. You can also complain to the U.S. Department of Health and Human Services office in
15.PROFESSIONAL MISBEHAVIOR: If you feel that your doctor or anyone else at your clinic or hospital has mistreated or abused you in any way, you can file a complaint with the medical section of the Consumer Protection department of the Indiana Attorney General’s Office toll-free at 1 800 382-5516. They can investigate your complaint and pass their findings along to the Medical, Mental Health Counselors or Marriage and Family Therapy Boards. These are the state agencies from which doctors, social workers, etc., get their licenses. They have the authority to restrict or revoke their licenses.
16.TAKING YOUR COMPLAINT FURTHER: What can you do if you followed the above steps and you still haven’t resolved your problem? Sometimes going through regular channels doesn’t give you the results you wanted. Then you have to decide how much further you want to take your complaint. You can write a letter to the Editor of your local newspaper. You can call a local TV station that has a reporter who advocates for viewers having problems with products or services, etc. You can call or write your elected officials. You can register a complaint with JCAHO — call their Office of Quality Monitoring toll‑free 1 800 994‑6610, or CARF — call toll-free 1 800 444‑8991. You can go to the local legal aid society for help or legal advice. They should be listed in your telephone directory. Be forewarned that doing these things can take a lot of energy! You may just decide to look for another provider. If you want to do this, you can check out the SHAPE web site (step 1 above). You can also learn about some of the other DMHA-licensed providers in your area by looking at their Directory of Service Providers. Call 317 232‑7800 (sorry, no toll-free number) to order one, there is a charge for a hard-copy. Or you can read/ print it off their web site, www.in.gov/fssa, click ‘mental health’, then click ‘publications’.