Getting Rid Of The Medicaid Institute For Mental Disease (IMD) Exclusion

What Is It?

The Medicaid Institutions for Mental Diseases (IMD) exclusion prohibits the use of federal Medicaid financing for care provided to most patients in mental health and substance use disorder residential treatment facilities larger than 16 beds. It also specifically excludes individuals who are between 22 and 64 years of age.

When Was It Created?

The IMD exclusion has been part of the Medicaid program since Medicaid’s enactment in 1965 and has not been updated since 1988.

Why It Needs To Go…

First and foremost because this legislation is outdated. It no longer serves the public it was once written for. In 2018 we are in need of more psychiatric facilities, with more beds that are able to better serve the millions of people in our country who live with mental illnesses that require professional treatment. People living with mental illnesses  should be able to receive treatment in a time efficient and affordable manner, as any other medical issue requires. It has been 53 years since this exclusion was created, society and medicine have advanced tremendously, this exclusion prohibits people from benefiting from medical advances that can potentially be life saving.

Example: West Virginia has 50,000 people living with mental illness yet it only has 206 psychiatric beds available. This is unacceptable and discriminatory. There are not more beds, because hospitals opt to replace unprofitable psychiatric beds with beds that cater to more profitable diseases that require more tests and treatments that will be funded by federal dollars. Currently, the IMD exclusion, prohibits payment for services on so many different technicalities that psychiatric services have been in rapid decline despite our societies rapidly increasing need for them.

How Can You Change This?

Senator Durbin from Illinois has introduced S.1169 – Medicaid Coverage for Addiction Recovery Expansion Act and it has hope attached to it. Senator Durbin wants to expand coverage to those dealing with Substance Abuse Disorders. I truly believe this is a step forward considering our nations epidemic concerning opioid and heroin addiction/overdoses. But it would also be a wonderful time to seize the moment and open up the same treatment options for those living with serious mental illnesses like schizophrenia and bipolar disorder.

It is time to abolish this exclusion all together. Removing it will allow millions of Americans to get the treatment they need to make not only their lives healthier but make our country safer. Simply put – treatment works.  Treatment is the difference between being able to care for your family and contribute to society and not being able too. Treatment can decrease rates of incarceration and homelessness. Treatment means the difference between life and death, because those with mental illness have a 17x higher risk for suicide. Treatment means jobs for those who want to enter the field of psychiatric services. Treatment means economic growth as new psychiatric facilities are built and staffed. Treatment means those Americans effected by serious mental illness can enjoy all of the advances in treatment options developed over the past 53 years. It is time to repeal and remove this exclusion.

Treatment does not necessarily mean institutionalization either. Treatment can be varied and include options like Assisted Outpatient Treatment (AOT) or in cases that warrant it longer hospitalization when necessary. The options for treatment should be open and can be varied depending on the individual. It is only ethical that our country make available to all that suffer from serious mental illnesses the same life changing medical treatments others with physical illnesses are able to benefit from. Continuing with this exclusion is discriminatory and hinders people from receiving quality care. It is wrong that a person with a diseased brain is treated differently than an individual with a diseased heart or any other diseased organ.

What Can You Do To Help?

Get involved! In order to make changes we must write to our senators and tell them we are ready for them to remove this exclusion. Using Senator Durbin’s Medicaid For Addiction Recovery Expansion Act as a sounding board, we can express that we feel it is discriminatory to exclude those in the most dire need of that expansion, those living with serious mental illnesses in America. This does not need to be an either/or situation. It should be that all Americans, dealing with mental health issues, should be able to secure quality care regardless of their economic status, ethnicity, sex or diagnosis. It should be as non-discriminatory as all other health care matters in America.

You can speak out by joining other people who are working to revoke the IMD exclusion.

Sign The Treatment Advocacy Center Petition

Or you can contact the following people who are Sponsors or Cosponsors of Senator Durbin’s Medicaid Addiction Recovery Expansion Act and request it be expanded to include those living with serious mental illness or that the IMD exclusion be repealed all together.

S.1169 – Medicaid Coverage for Addiction Recovery Expansion Act

Introduced: 05/17/2017

Sponsored By:

Sen. Durbin, Richard J.[D-IL]
Contact 711 Hart Senate Office Building Washington DC 20510

(202) 224-2152

Party Democratic

Medicaid Coverage for Addiction Recovery Expansion Act Summary

This bill amends title XIX (Medicaid) of the Social Security Act to allow states to provide medical assistance to adults for residential addiction treatment facility services under the Medicaid program if such services are offered as part of a full continuum of evidence-based treatment services. “Residential addiction treatment facility services” are medically necessary inpatient services provided in an accredited, size-limited facility for the purpose of treating a substance use disorder within a specified time period.

The provision of medical assistance for such services to an individual shall not prohibit federal financial participation for medical assistance with respect to other services provided to the individual within the same time period.

Subject to specified conditions, a woman who is eligible for medical assistance on the basis of being pregnant may remain eligible for residential addiction treatment facility services for specified time periods without regard to eligibility limits that would otherwise apply as a result of her pregnancy ending.

In addition, the bill establishes a grant program for states to expand infrastructure and treatment capabilities of existing youth addiction treatment facilities that: (1) provide addiction treatment services to youths under Medicaid or the Children’s Health Insurance Program (CHIP), and (2) are located in communities with high numbers of medically underserved populations of at-risk youths. At least 15% of grant funds awarded to a state must be used for making payments to rural facilities.


Cosponsor Date Cosponsored
Sen. Portman, Rob [R-OH]* 05/17/2017
Sen. Brown, Sherrod [D-OH]* 05/17/2017
Sen. Capito, Shelley Moore [R-WV]* 05/17/2017
Sen. King, Angus S., Jr. [I-ME]* 05/17/2017
Sen. Collins, Susan M. [R-ME]* 05/17/2017
Sen. Manchin, Joe, III [D-WV]* 05/17/2017
Sen. Booker, Cory A. [D-NJ]* 05/17/2017
Sen. Warren, Elizabeth [D-MA] 05/25/2017
Sen. Hassan, Margaret Wood [D-NH] 05/25/2017
Sen. Wicker, Roger F. [R-MS] 06/08/2017
Sen. Tester, Jon [D-MT] 06/13/2017
Sen. McCaskill, Claire [D-MO] 07/31/2017
Sen. Klobuchar, Amy [D-MN] 07/31/2017
Sen. Duckworth, Tammy [D-IL] 10/16/2017
Sen. Feinstein, Dianne [D-CA] 10/17/2017
Sen. Blumenthal, Richard [D-CT] 10/31/2017
Sen. Sullivan, Dan [R-AK] 11/15/2017
Sen. Murkowski, Lisa [R-AK] 11/27/2017
Sen. Van Hollen, Chris [D-MD] 04/23/2018
Bill Latest Title Relationships to S.1169 Relationships Identified by Latest Action
H.R.2687 Medicaid Coverage for Addiction Recovery Expansion Act Identical bill CRS 05/26/2017 Referred to the Subcommittee on Health.

Contact The Senate Finance Committee

The Honorable Orrin G. Hatch

Chairman, Committee on Finance, United States Senate
219 Dirksen Senate Office Building
Washington, D.C. 20510

The Honorable Ron Wyden

Ranking Member, Committee on Finance, United States Senate
219 Dirksen Senate Office Building
Washington, D.C. 20510

Note: Due to security precautions taken by the U.S. Senate, outside mail is delayed 7-10 days; therefore, whenever possible, you may also consider faxing your letter(s) to 202-228-0554.

Senators who’s names appear in red serve on the Senate Finance Committee & The Senate Subcommittee for Health***

   Name                            Address                           Phone                              Email Form

Hatch, Orrin G.(UT), Chairman 104 Hart Senate Office Building Washington DC 20510 (202) 224-5251
Grassley, Chuck(IA) 135 Hart Senate Office Building Washington DC 20510 (202) 224-3744
Crapo, Mike(ID) 239 Dirksen Senate Office Building Washington DC 20510 (202) 224-6142
Roberts, Pat(KS) 109 Hart Senate Office Building Washington

DC 20510:

(202) 224-4774
Enzi, Michael B.(WY) 379A Russell Senate Office Building Washington DC 20510 (202) 224-3424
Cornyn, John(TX) 517 Hart Senate Office Building Washington DC 20510 (202) 224-2934
Thune, John(SD) 511 Dirksen Senate Office Building Washington DC 20510 (202) 224-2321
Burr, Richard(NC) 217 Russell Senate Office Building Washington DC 20510 (202) 224-3154
Isakson, Johnny(GA) 131 Russell Senate Office Building Washington DC 20510 (202) 224-3643
Portman, Rob(OH) 448 Russell Senate Office Building Washington DC 20510 (202) 224-3353
Toomey, Patrick J.(PA) 248 Russell Senate Office Building Washington DC 20510 (202) 224-4254
Heller, Dean(NV) 324 Hart Senate Office Building Washington DC 20510 (202) 224-6244
Scott, Tim(SC) 717 Hart Senate Office Building Washington DC 20510 (202) 224-6121
Cassidy, Bill(LA) 520 Hart Senate Office Building Washington DC 20510 (202) 224-5824
Wyden, Ron (OR), Ranking Member 221 Dirksen Senate Office Building Washington DC 20510 (202) 224-5244
Stabenow, Debbie (MI)  731 Hart Senate Office Building Washington DC 20510 (202) 224-4822
Cantwell, Maria (WA) 511 Hart Senate Office Building Washington DC 20510 (202) 224-3441
Nelson, Bill (FL) 716 Hart Senate Office Building Washington DC 20510 (202) 224-5274
Menendez, Robert (NJ) 528 Hart Senate Office Building Washington DC 20510 (202) 224-4744
Carper, Thomas R. (DE) 513 Hart Senate Office Building Washington DC 20510 (202) 224-2441
Cardin, Benjamin L. (MD) 509 Hart Senate Office Building Washington DC 20510 (202) 224-4524
Bennet, Michael F. (CO) 261 Russell Senate Office Building Washington DC 20510 (202) 224-5852
Casey, Robert P. (PA) 393 Russell Senate Office Building Washington DC 20510 (202) 224-6324
Warner, Mark R. (VA) 703 Hart Senate Office Building Washington DC 20510 (202) 224-2023
McCaskill, Claire (MO) 503 Hart Senate Office Building Washington DC 20510 (202) 224-6154
Whitehouse, Sheldon (RI) 530 Hart Senate Office Building Washington DC 20510 (202) 224-2921
Brown, Sherrod (OH) 713 Hart Senate Office Building Washington DC 20510 (202) 224-2315

Want To Learn More?

To learn more about the Institute of Mental Disease Exclusion please visit the Social Security Administrations Website:

This is a really great PDF Fact Sheet that explains the IMD in relatively simple terms:

What’s The Difference?

Mary Jane has an elderly father. She has watched as his mental capacity has faded. She often stands outside his bedroom doorway and listens to him have conversations with her deceased mother. Recently she awoke at three o’clock in the morning to find the front door wide open and her father missing from the house. She called 911 and they found her father a few blocks away, sitting on a park bench in his pajamas, having a conversation with someone only he could see.

She knows in her heart he is no longer safe with her. The police explained when they brought him home that she would have to start thinking about putting him in an assisted living situation. She doesn’t like that thought, but she knows in her heart he will be safer there.

Three days ago, the neighbor came home to find her father sitting on the porch swing in the back yard. They asked him what he was doing. He stared off into space as if he didn’t even hear them speaking. They lovingly took the elderly man by the hand and walked him home. Mary was embarrassed that he had slipped away unnoticed. The neighbor assured her that he understood and told her he would be watching out for him in the future.

Mary has talked to her other siblings and they have decided it is time for him to go to some place safer. A place where trained professionals will keep him safe in an environment that caters to his specific brain disease. Its a hard decision, but the family is sure it is the right one. Mary Jane and her family get to pick between a dozen facilities that are all equally welcoming and well staffed. Transitioning her father from home to facility is easy and seamless. Now her father is safe and Mary Jane can sleep at night.

Mary Jane has a 22 year old son who recently started acting different. He returned unexpectedly from school and refuses to go back. He no longer takes a shower, stays up all night, and roams around the streets laughing and talking to himself. She doesn’t understand what is wrong. For a moment she wonders if he is on drugs, or having problems with his grades. She contacts the school and learns that his behavior there had been even more bizarre. He had jumped up in the middle of a laboratory and told the whole class he was the President of The United States and he was on a mission to save the world. Everyone laughed and he ran away. The school had wondered what had happened to him.

She decided to make a phone call to get him to a counselor. She told them on the phone he wasn’t himself. They couldn’t see him until next month, and her insurance was not going to cover the visit. She agreed and hung up. His behavior became stranger and she could hear him laughing and talking to someone day and night in his room. She came home from work to find him sleeping in the hedgerow in front of their house. She woke him up and asked him what he was doing. He replied “It is too hot in the house”. Mary goes in to find that he has turned the furnace on full blast. He lit all the burners on the gas stove and the house feels like an oven.

She calls the psychiatrist office and asks if there is any way to see them sooner. They ask if her son has tried to harm himself or is threatening others. She says no. They say that they can’t do anything to intervene and that it will just have to wait till he sees the doctor in 3 weeks.

Mary doesn’t understand what has happened to her son. She feels afraid to leave him while she goes to work. Everyday she comes home to find something else he has taken apart to keep “them” from watching him. He removed all of the smoke detectors, put a blanket over the TV and hung sheets over all the windows.

One day while at work she gets a phone call from the local police department. The officer tells her that her son had wandered into the neighbors back yard and entered into their home through their sliding glass door. They came home to find him eating a bowl of cereal and watching TV.  When they asked him what he was doing he replied “I’m saving the world”. They called the police.

Mary asked if they had brought her son back to her house. The police officer replied “no ma’am your son is in jail”.  He has been charged with felony home invasion. In disbelief she asks what she can do. The officer says not much. She tells them that her son has not been himself lately and that he had an upcoming doctors appointment. The officer tells her that due to HIPPA laws he can’t discuss anything with her concerning her sons mental or physical state without him filling out the proper forms. She is also not allowed to speak to him, she will have to wait for him to call.

Mary calls the family lawyer. When she gets home the neighbors are outside washing their car and they stare at her with disdain. She walks over to try to apologize but the wife rudely interrupts her. “Your son broke into our house and we are pressing charges” she says without any compassion to her tone. “He hasn’t been well lately” Mary retorts, “I had made him an appointment to see a doctor”. The wife interrupts again “I don’t care why he did it. You don’t go into other people’s houses, we feel violated”. Mary decides its best to just go home and try to figure out what she can do for her son.

The lawyer helps Mary bail her son out the following day. His mental capacity has severely declined now. Mary puts him in the car and decides to take him to the emergency room. They will help she is sure. She watches as her son’s flat expressionless face stares out the windshield. She asks him about jail. He just looks forward. As they pull into the hospital her son asks her why she has brought him here. Doesn’t she know this is where they kill people? She tells him that she just wants to get him some help. He screams at her and tells her they will kill him if he goes inside.

She parks the car and goes inside to get someone to help bring him inside. She explains to the front desk what is going on. “How old is he?” the nurse asks. “22” Mary replies. “Do you have guardianship over him?” she asks looking down at her computer screen. Mary is confused “what is guardianship?” “Well since he is 22, unless he walks in here and agrees to be seen and treated, I can do nothing for him or you, unless you have guardianship or if he has tried to hurt himself or someone else” she replied in a flat almost robotic tone. “I don’t have that, how do I get that?” Mary asked. “You have to go to court, and prove he is mentally incompetent to make his own decisions” she says finally looking up at Mary from behind the front desk. “I don’t have that and I don’t have time like that, there is something seriously wrong with my son” Mary pleads with the nurse. “If he won’t come in here, I can’t send anyone out there to get him, I’m sorry…its the law ma’am” the nurse put her eyes back down to her computer screen.

Mary returns to the car to find her son’s door wide open and him missing. Her heart sinks. She drives around the neighborhood looking for him and finds him sitting under a tree in someone’s yard. She begs him to get in the car. He says “I don’t trust you – you work for them.” She tells him if he gets in the car she will take him to the place where he can save the world. “You promise?” he cautiously asks. Choking back tears she says “I promise.” She drives home and calls her boss and tells him she has to take off some time from work because her son is ill.

She calls the psychiatrists office again. They repeat the whole “until he hurts himself or others there is nothing we can do” line she has grown to hate. She tells her son to take a bath and relax because he didn’t get one in jail. She hears the bath water running upstairs and decides to try to relax herself. After a half hour the bath water is still running and she goes to see why. The carpet in the hall is soaking wet as water is running out from under the bathroom door. She calls her son’s name. No answer. She opens the door to find the bathroom empty, tub overflowing, and the window opened. She looks out and sees her sons crumpled body lying on the lawn below. She runs downstairs, grabbing the phone on the way out the door, she dials 911.

Thankfully he is still alive when she reaches him. The ambulance comes and they take him kicking and screaming to the hospital. She follows him to the hospital, crying all the way there. She doesn’t understand what has happened to her son. She also doesn’t understand why it is so hard to get anyone to help him. At the hospital he is involuntarily committed.

This is what it took for him to get help. He had to almost die. There are not facilities that cater to the psychiatric needs of those who suffer from schizophrenia or bipolar disorder as there are for Alzheimer’s or Dementia patients. Although all of these diseases prevent the sufferer from being able to make informed decisions about their own care, only the elderly are protected in our society. There are nursing homes, assisted living and group homes for the elderly with psychiatric diseases. Places to keep them safe and serve their specialized needs.

But those that are afflicted early on in life by diseases like schizophrenia or bipolar have no long-term sustainable options. They are too sick to acknowledge they need help and the state will not force help on them. They will allow them to become homeless, often living in dangerous conditions, where they are preyed upon by other people because they have mental illnesses. Being robbed, raped or murdered in the states eyes is better than being involuntarily committed to a hospital where you receive treatment that brings you back to a state of wellness. Treatment can bring you back to a mental capacity where you can make informed decisions about your care.

In the United States of America if you develop a brain disease like schizophrenia or bipolar disorder which ultimately destroys your ability to recognize reality you will suffer one of three fates. You will go to jail. You will become homeless. Or you will spend your life being admitted and released from temporary psychiatric centers that are mostly equipped to keep a patient for about 3 days.

There are no long-term facilities anymore, we have replaced those with jails and prisons. Here those suffering from serious mental illnesses are warehoused for crimes that should be overlooked because of their diseases. They are booked on felony home invasion for entering the neighbor’s house in states of confusion. I know of a young man facing felony kidnapping charges in Florida for getting in the wrong car while in psychosis. My own son sits accused of “Attempted Murder with a Weapon” in Florida for an alleged incident with a comb while he was admitted to the hospital on an Involuntary Committment. The charges are always harsh and they sit there for years in jail cells before trials even can begin because they are often too sick to defend themselves.That seems so unfair. You have a biological brain disease. You should be allowed to receive the same standard of care and compassion that all ill people do in America.

So please someone tell me…what is the difference between Schizophrenia and Alzheimer’s, Dementia, Parkinson’s Disease, Huntington’s Disease, Multiple sclerosis that makes getting treatment  so complicated and hard to get? The effects of schizophrenia are not just “hearing voices” as has been popularly portrayed. This disease effects every aspect of the person living with it. Cognitive damage will occur in the loss of memory, inability to organize thoughts, or even convey ideas. They will often find themselves living in alter realities, where they can see and hear things that we can not. This is a debilitating disease that is very hard to live with. It becomes even harder when society wants to punish you for becoming ill.

One day, you wake up, and your brain has forsaken you. It is only reasonable to assume that you should be able to receive care with dignity. All humans deserve dignity, especially those that are suffering from chronic illnesses.


Our Mission : Advocate – Educate – Unite

“It is more important to know what sort of person has a disease than to know what sort of disease a person has.” – Hippocrates

There is no more persecuted group in America than those living with serious mental illnesses such as schizophrenia or bipolar disorder. This subset of our population is ostracized and even punished by the judicial system for developing brain diseases. All too often those living with these chronic illnesses find themselves in jail, living on the streets or going in and out of day treatment centers which is only a temporary fix to their permanent problem.


Advocate. Educate. Unite


“To help protect the human rights of those that are incarcerated and are living with serious mental illnesses. To stand with those that are too weak to stand for themselves. To educate people about these brain diseases. ”


We give support and help to those that need it most by caring for the rights and dignity of those with serious mental illnesses and their families…especially those most vulnerable…the incarcerated with serious mental illness. We will write letters to judges, or other officials, on behalf of your loved one. We spend our time finding those people who have been persecuted against and sharing their stories in as many places as possible to make sure society knows that there are millions of people suffering inside cell walls, in dark alleys, and are not getting the care they seriously need to live with their chronic brain diseases.

Our mission is to stand with those that are often to weak to stand for themselves.


We maintain the view point that schizophrenia, bipolar disorder are brain diseases, and as such they will affect every aspect of the person’s life. They are diseases that can cause the individual to act outside their own predetermined morals and beliefs and as such, they should not be punishable by law. These diseases are no different than Alzheimers, Parkinson’s, Dementia or Brain Cancers that cause ones behavior to be modified by their presence in ones brain tissue and the destruction that presence brings about. By criminalizing schizophrenia, bipolar or schizoaffective disorders, you are punishing someone solely for developing a brain disease. Their behavior is not controllable when the disease presents itself in psychosis. Although there are mysteries still surrounding the origin of these diseases scientists are learning that these are not “trauma based” in origin but are actually genetically transferable biological brain diseases.

Our mission is to educate people about these brain diseases.


We also feel strongly that by coming together & bridging the bias between all of our differences we can accomplish more as a united team, focusing on what makes us all the same. Our passion to make the world a kinder, safer place for those living with these brain diseases. These brain diseases do not discriminate against their recipients race, sex, income bracket, or political platform – they affect those from every race, socioeconomic group and political party. By focusing on our solidarity towards changing the stigma that is associated with these brain diseases we can do far more to rally against the powers that be and ultimately make the changes we need made. By focusing our energy on working together we can move forward much faster and therefore we have a firm stance on unity. Solidarity brings with it strength. There are many organizations that are at the forefront of making these changes already. Uniting with them – moves us all forward.

Our mission is to unite those within our mental illness advocacy community.

I ask that you join us. On the 1st & the 15th of each month we send out a SMI Rights Newsletter that contains the information individuals who are currently standing trial or are incarcerated that need our help. You will be given contact information to write on their behalf to judges or other officials or you may begin to support them while incarcerated through encouraging correspondence and postcards of support. We are one of their lifelines to the outside world.


Tamara Lee


National Shattering Silence Coalition
Treatmant Advocacy Center
NAMI.ORG : National Alliance On Mental Illness
Mental Illness Policy Org : Unbiased Information for Policy Makers + Media


Join These Mental Illness Advocacy Groups To Get Involved

Please Consider Joining The NSSC

As you may know, because my son Elliott became sick, I have been working to be the change I want to see in the world for those that have serious mental illnesses such as schizophrenia or bipolar disorder.

Beginning next week I will be sitting on a couple committees for the NSSC (Link below to join) and I would encourage any of my humanitarian minded friends who want a cause to get behind to consider the plight of those with serious mental illness in America. Many of the organizations like NSSC are filled with people like me, parents who have suffered with their child at the hands of a very cold, COMPLICATED, cruel system of “help”.

We need people like you, who want to make a change just because you know that this is all wrong. You shouldn’t have to hurt yourself or others to get help. You shouldn’t have to go to jail to get help. You shouldn’t go to prison for 30 years just because you developed a brain disease. You shouldn’t have to die under a bridge, infested with lice, just because your brain disease would not allow you to seek help or even accept help that was offered.

The system in America is badly broken. But the tipping point has been reached. I encourage you to become involved in the mental health revolution. Take a stand with me, against these atrocities, help me make this world a kinder, safer world for all those born with brain diseases like schizophrenia and bipolar. Join. Advocate. Educate. Take a stand.