Time to RAISE the Amount of Care

OCT. 30, 2015

By Ken Duckworth, M.D.

Maggie and her mother Maureen at the RAISE Congressional briefing alongside Darcy Gruttadaro,  the Director of NAMI's Child and Adolecsent action center.

On Oct. 20, Maggie, a 20-year-old nursing student, bravely stepped up to the podium in the Rayburn House Office Building at a Congressional briefing organized by the National Institute of Mental Health and NAMI. Maggie shared her personal experience living with schizophrenia and persistent auditory hallucinations to the Congressional staffers, colleague organizations and media.

She was there in part to announce the release of the most highly anticipated research on mental health in years. The research consisted of two studies as part of NIMH’s RAISE research program. RAISE, which stands for Recovery After an Initial Schizophrenia Episode, is a groundbreaking initiative looking at how best to treat people with early psychosis.

One study, the RAISE Early Treatment Program (RAISE-ETP), was published in the American Journal of Psychiatry and led by Dr. John Kane and begins to provide an answer to the fundamental question: can we do better for people early in the course of living with psychosis in real world settings? The answer appears to be a clear, yes. To quote Maggie, who participated in a related trial, it made her “want to not just live…but also, want to live a fulfilling life.”

RAISE-ETP compared coordinated specialty care to regular community-based treatment. The goal was to determine whether this new treatment approach made a difference for the individuals with early psychosis. The study observed 223 individuals provided Coordinated Specialty Care and 181 individuals in regular community care. The Coordinated Specialty Care sites trained existing community mental health workers in these evidence-based treatments.

The study looked at quality of life, symptom improvement and involvement with work and school during the first two years after the study began. The findings were that people receiving coordinated specialty care had much better results than typical community-based care.

During the briefing, Dr. Lisa Dixon, who led the RAISE Implementation and Evaluation Study (RAISE-IES)  explained that her study had similarly positive results, with participant hospitalizations down more than 50% and participants in school or working up nearly 40%. Dr. Dixon discussed coordinated specialty care’s success in engaging participants and improving their overall quality of life.

Findings from Dr. Kane’s RAISE-ETP study revealed the impact of the coordinated specialty care intervention was much stronger if the person had psychosis symptoms for less than 74 weeks. This shows how critical it is to make access to services easier and to improve awareness and attitudes towards people seeking help if they have symptoms of psychosis. This is consistent with previous findings that show that it matters how soon a person gets help—there is a window of time to get the best services to people with early schizophrenia.

I volunteer at the prevention Recovery of Early Psychosis Program (PREP) at Massachusetts Mental Health Center and I see what good can come from dedicated staff devoted to young people living well with psychosis. The program is welcoming and has many of the things that are in the RAISE study—early involvement of families, and support for work and school. PREP always has a wait list even though it does not advertise. As much of a privilege it is for me to be there, I know PREP and programs like it need to be proven to be a better model to encourage more funding and replication. The RAISE initiative seems to have provided answers to these questions.

RAISE showed that the coordinated specialty care services made a real difference in the following two years after the first signs of psychosis. Maggie’s mother, Maureen, said the program gave her daughter the ability to move forward with her life and the knowledge and skills she needed to help her along the way.

As NAMI Executive Director, Mary Giliberti, said at the RAISE briefing, “This isn’t just about the numbers. This is about real lives.”

Now what we need to find out is if these services improved outcomes over a longer time. For example, if it helped to keep people at a higher level of functioning in school or work over a decade. It would also be important to understand if th

ese services can help to save money over time, by reducing hospitalizations and disability. Finding ways to provide funding for these more comprehensive services will also be crucial.

We salute NIMH for conducting this research, and I look forward to following this line of research and sharing it with the NAMI community. We look forward to the continued great collaboration efforts as the field tries to understand what works and in what stage of illness. NAMI members work every day to improve attitudes and this study gives us power to push for more services like this.

I think the young woman summed up what the heart of this research showed us: “You can live your life with [schizophrenia]…it’s not hopeless.” 


MAR, 06, 2016 10:58:09 PM
Robin Finley
I have a 37 year old schizophrenic son. It is hard to read these comments since I have gone through the same things and it broke my heart. My son is now in managed care, but that was a long hard trip. I am physically afraid of him, with good reasons. Loosing a child is unbearable, but the knowledge that he will be in danger, or put others in danger is worse. However, he is very low functioning so the danger is that he will simply strike out and not plan anything more elaborate. Still I know the fear he will die on the streets. Or somewhere worse.

JAN, 09, 2016 08:34:51 PM
sharon coursey
I would like to take a moment to say my heart breaks to hear all of the comments that were addressed. I want to say this is total politics. There needs to be more concern for mental illness. I have experienced that after the division took my children away and not dealing with the underlying problem. Focusing on my mental illness which was drug induced years ago. Never took the time to see that I was crying out for help for my children, This has destroyed my loving family. It hurts to see that we can spend millions of dollars to send a rocket ship to the moon and family bond means nothing. I will continue to pray for all of your concerns to hopefully see one day our politicians realize the value of family. We wonder why our world is in such a mess--its because of money and population control.

DEC, 23, 2015 03:20:10 PM
Ta' Lisa Davis
I am very pleased to hear about RAISE. This is a begining that can help save early pyschosis. I get this and truly understand. I know we are hoping for better treatment and the system appears to keep failing us as a family but reward mentally ill patient rights to make decisions etc.
My son has schizophrenia. Symptoms started his freshman year in high school. I lost my son. He is now 27 years of age and it breaks my heart to see him suffer like this. I am a RN and needless to say, My hands are tied with getting help for my son.
Because of this law, he has a right to say if he will do harm or not! Really, as a strong advocate for my son, I called the democratic party, Claire to ask for help, I written letters to policy holders seeking help and during this time, we had private insurance. I could not receive any help. Well, the worst happened! My son beat me really bad which forced me to file charges against him. I thought I was able to receive help if he go through the Justice system, needless to say, that was worse.
I say this because I am still fighting for help! No medications are helping, at least, as of now and I am so helpless.... It cost nearly 3,500 dollars for me to get custody of my OWN son, to place him in a mental facility, but we live in St. Louis, MO. WE HAVE NO GOOD MENTAL ASSISTANCE HERE!
What is a mom to do. My son graduated from DeSMet High School and live fearful daily from psychosis. When, When will families get the help they need for their love ones.

DEC, 13, 2015 01:59:06 PM
Lisa Meyering
I'm very pleased to read about the strides being made toward helping individuals in the early stages of mental illness. Perhaps the RAISE program, or some variant of it, can make a significant difference for these families, and for future generations. Perhaps it will launch the trajectory of their lives in whole new direction -- one in which the kind of pure hell that so many affected individuals and their families are living with today can be avoided. WOULDN'T THAT BE WONDERFUL? Keep up the good work!
Unfortunately, it's true: for the time being, a large percentage of the rest of us are still -- for lack of a better word, and pardon my French -- screwed. We are unable to get the help we need for our very sick loved ones until a situation is deemed imminently "life-threatening." By "imminently," I mean compelling evidence that can be clearly seen in a 5-7 minute window that a police officer may be able to spare in his/her busy schedule. This law is FLAWED, UNFAIR, and is DOING MORE HARM THAN GOOD. It protects the "rights" of individuals whose judgment is impaired to the point where they are unable to comprehend that they need help, and are unable to help themselves -- TO THEIR OWN DETRIMENT, to the detriment of their families, and too often, to the the detriment of innocent members of society. THIS LAW MUST CHANGE. I do think early intervention is key. RAISE is on the right track. As for the rest of us for whom this help is unavailable: We need to RAISE HELL (per se) to get this law changed. I am presently researching how this might be accomplished. Any suggestions/ideas you might like to offer to help make make this law better would be appreciated.

DEC, 06, 2015 01:05:46 PM
Ozella " Michelle " House
@Ewa Seiler....Jehovah's beginning and end don't meet,just like preventing someone from choking it's never to early or to late,it just happen in a blink of a eye! I had to start by not missing my wants,that made me humble enough to receive Jehovah's psychological counseling.... I had to do a serious self examination through His Word....then I were able to compare my lived experience with His word,and every answer I needed,come! Divine guidance is very important to me. I hope this helps much love!

DEC, 06, 2015 12:42:34 PM
Ozella " Michelle " House
When there's a new challenge there's a new definition, Doctor Noel Jones...We have to face the facts when people don't have "lived experience" they are not going to be capable of assisting those with mental illness, that's psychological abuse itself! Through my experience there were people in psychiatry abusing their authority,there were always a bunch of eccentric circular speech, I mean these people can't discern the difference between a "psychological abuser or the psychologically abused"they had everybody on one unit mixed together....it was hades! I manage to cope everyday buy handling negative thoughts with positive ones, no futility! I have developed that studying my Divine Guiders Word,all need divine guidance it simplified everything for me,I learned to place scripture before tradition and a lot of confusions....left....family, legal and financial crisis taught me humility, empathy and love! I had to loose everything so that Jehovah could be EVERYTHING!

DEC, 01, 2015 09:14:41 PM
Shelly Quigley
We bought a tiny condo for our daughter who had been homeless and living on the street for 4 months. She spends most of her time smoking, sleeping and eating. She mostly takes her meds but is terribly isolated and argumentative when we try to intervene with her lifestyle which to me doesn't seem like a life at all. Is there any way to force her into a group home where there will be some supervision and at least someone to talk to. We are moving away and won't be able to see her 3x a week as we have been doing--completely burnt out.

DEC, 01, 2015 08:02:18 PM
I'm with Deanna. My priority is to do whatever I'm able so my son is safe - off street & away from the street people lifestyle. NAMI mtgs are good yet where is the hands-on real help. My son is smart, kind, polite except when MI symptoms/behaviours flare-up. What will happen to son when I'm gone? I fear ... I cry.

DEC, 01, 2015 05:02:54 PM

DEC, 01, 2015 04:59:39 PM
To hleartbrocken mom from another. My son has been bounced around in the public mental health system. Yes I have tried many avenue and there is NO HELP, NAMI. Everyone is only for donations, money, pushing drugs from thel systems, Doctors, Drug Companies etc.
What is offered is publications of false information in diagnoses etc. There is no mental illness not made by the systems and DRUG AFFECTING THE unbalance of a person further and further into helplessness. Legal Aid, lawyers, police, also are in the profit and not help or protect ANYONE. These are the world and we are the actors. Inhumane treatments of humanity. CCHR is taking action in defense of drugging children. May they take on the odult drugging conclomerates

NOV, 30, 2015 11:02:59 PM
Deanna, you know your son is a risk to himself. Make crisis services see that. Exaggerate if you have to, Then, when your son is taken to the hospital, refuse to take him back. Try to force them to keep and treat him. He is a danger to himself and you can't protect him the way the hospital can. Stick to that idea and make your son the hospital's responsibility. It may work.

NOV, 30, 2015 08:30:52 PM
Audrey Elliott Forrester
for the past 10 years I have watched my 30 year old deteriorate with multiple hospitalization and ineffective treatment regiments. This individual did eVerything thing well prior to her breakdown, a six mont stay in a CR was a total failure with hospitalization, without family support she would be in a homeless "shelter", which would have left her on the streets.

NOV, 30, 2015 06:35:59 PM
Marian O'Brien Paul, PhD
It is all well and good to research how to intervene early. But what about those people who have been waiting forever for help? For 36 years, my son, also named Jeffrey, has suffered from schizophrenia. I remember the hope I had in the 1990s, the "Decade of the Brain," when the research being done was supposed to open new doors for those with schizophrenia. What happened to that research? Some people say it is being used for things like Alzheimer's, Parkinson's, PTSD, because there is money for people who suffer from those diseases. Maybe that's true. Maybe it isn't. I don't know. I do know that no one seems to offering any help for long-term sufferers of schizophrenia. Most of them have no funds other than Medicaid or Medicare. My prayers are for all the mothers (and fathers) who have been hoping all these years to no avail. May God have mercy on all of us and on our disabled children.

NOV, 29, 2015 10:51:45 PM
June Cummings
I so wish I could give hope to these parents. Our son has had a diagnosis of paranoid schizophrenia for 33 years. He is a college graduate. He has been in treatment since the age of 24 and has fortunately allowed us, most of the time, to be involved in his treatment.For years we were on a first name basis with our mental health system. We have been actively involved in NAMI for 31 years, taught group support, F to F classes and still give peer support. We haven't given up but we do feel his treatment now consists of medication monitoring every couple months. Without our support and involvement he would also be on the streets. Research just has to be the key.

NOV, 29, 2015 09:04:21 AM
Donna Pappas
This is why I support NAMI. They recognize mental illness in young people, which was not done until recently. Getting treatment while the family can still be involved.
Other blogs I have read about schizophrenia have similar comments to this blog. I read them to look for hope for my brother and my family. Slim pickings tho. He was able to fight the voices for a long time, but they overtook his thoughts at 39 years old.We will be selling the house he lives in soon. Cruel, right? But it's to pay for assisted living for our mom who has dementia. Where will he go? I am at peace with what will happen to him.
I have made a change and no longer describe my brother as schizophrenic. Mention that word, and people imagine somebody on a crowded train with a rifle. So I try to say he has emotional, physical and mental problems. Let them meet him and make up their own mind.
All I can suggest is that family members concentrate on the good things in your life, love the people who love you. And seek help for yourself! If it's hard for you to do that, imagine how hard it is for your family member. You can't live their life, you can't protect them from this. if you pray about this, pray to understand what you will learn from this.
Guilt and worry are a waste of your precious time on this earth. Support NAMI. If any help is to be found, it is their focus.
Love to you all.

NOV, 28, 2015 03:28:09 AM
Bobby I
It breaks my heart to read so many posts with loved ones not getting the care they need. Why is it so difficult? It shouldn't have to be. I also have a 25 year old younger Sister suffering from schizophrenia and parents who are sometimes just too busy to give us the love and care we've always needed. Sometimes I feel like the world is on my shoulders juggling a Job, a relationship, 3 other sisters while still always trying to be there for her, helping her find the proper medication doctors and treatment. California mental health laws are horrible, She can run away when she's unstable and go missing for days at a time. Putting herself in danger, having strange people take advantage of her while we sit home,
worry and search. She's been sexually abused many times, beaten, robbed and because of our laws, it happens not only to us but many people dealing with mental illness. I know there's times where You may feel alone and hopeless but in my heart I just know there is hope, and help out there. If we all came together maybe our single voices would be heard for once. Your not alone, so please don't give up even on the darkest days. Things will get better.

NOV, 27, 2015 06:21:13 PM
Douglas Dunn
The thrust of this article is all well and good. However, it does not remotely tackle the issue of anosognosia, or a person's mental illness based lack of awareness that they are seriously mentally ill. Until NAMI National really takes this issue "head on," RAISE data is spotty at best, and possibly misleading at worst.

NOV, 27, 2015 02:26:01 PM
Barbara Homokay
I am so grateful to God and NAMI for opening my eyes to what I can do to help my son with his recovery. I am also grateful to my son for his willingness to help himself, even when the voices in his head tell him the opposite. It's been a long road and it continues, but for today he is doing better. My advice is to get involved and be the voice of advocacy for your mentally ill relative. The laws will change if we get loud enough and shine a brighter light on this glaring problem.

NOV, 27, 2015 01:30:20 PM
Nina Parris
In my capacity as a Family to Family teacher and Family Support Group facilitator, my heart is broken every time a parent, sibling or spouse bemoans the fact that an ill loved one must be considered a threat to themselves and others before receiving proper treatment for their disease. We need to come forward and demand that mental illness be "decriminalized".

NOV, 26, 2015 02:34:08 PM
Isa Lang
Community support is going grassroots and becoming peer support in some areas of the country. This is particularly true in a good economy where tax-exempt organizations can find grants and other money to work with. High-functioning peers can empathize with lower-functioning peers to an extent that professional caregivers cannot. I fully subscribe to a combination of peer support along with prescribed medication dosage until we know for certain that we can lower an individual's dose without sending him/her back to the hospital.

NOV, 26, 2015 12:15:53 PM
Judith Banks
I would like to help mom Deanna Edmondson.

NOV, 26, 2015 10:22:44 AM
Mo Saidi, MD, ALM
In Re to Mrs. Lacey's comment,elaborate that our family in a similar situation when comes to have an adult child who suffers from Schizophrenia but with major difference: After going through similar heartbreaking course of events surrounding our 39 years old daughter with MA from an Ivy League University, while she was incarcerated, she was forced to have long-acting injection, commitment to a mental institution, and then supervised follow-up by capable Bexar County Mental Health Services professional team. Even though she has encounter a few relapses mainly due to her lack of diligent follow-up, lately she has regained her functional capacity and for the last few years has become a popular teacher at a local college. There is light at the end of the tunnel for Mrs. Lacey's difficult situation: the combination of legal, professional, State Mental Services, and family's unwavering support and persistence could result on your son to gain the crucial insight into his illness and produce a desirable outcome and his commitment to handle the mental problem..

NOV, 26, 2015 09:39:42 AM
Barbara Stackhouse
I to have a son with schizophrenia, and have had all the problems listed in the above comments. I found that I had to become a pain in the a--, before anyone would listen to me. If you want to get help, contact your congress person for your district in DC and tell them the problems your having, next go to the state office for NAMI, become familiar to the head of NAMI, they have given me invaluable information. On the local level, become a pain to your local mental health groups. I have found when you reach the CEO's for the local counciling center for mental health, you can get more help. I also was able to contact on the state level the person who was in charge of funding for the Mental Health agency and she was able to get me help at the top level, I don't accept the word, "we can't do that", from anyone, I keep going until I get some one who will either help or give me a reason why, that, is satisfactory to me. My son was also on the streets and we had no knowledge of where he was, I waited until he turned up in jail and went to the state Nami Organization and requested their help, they told me how to get him in the mental health court to get him help. He was held in jail for a period of time then thru the court he was put in the state hospital. This wasn't an easy thing to do, but I knew that he needed to be in a place he couldn't walk away from. He eventually got to the place he was released. Living in a small town has its advantage, he wanted to live on his own, so we went to the police and asked them to watch him, they were able to become friends with them and when he stopped his medications, they were able to talk him into going to the hospital, this was a great help, because he didn't want anything to do with us and would kick us out of his apartment. To issue a 302 is very hard to do for a parent, and he would always blame us for him being picked up and taken to the hospital. The only way we can get the support needed for our children is to keep constantly contacting the elected officials so we can get the help needed.

NOV, 26, 2015 08:18:09 AM
Donna Pappas
The reason I support NAMI is because they recognize mental illness in young people. The previous comments are about 40 something's. My brother was able to control the schizophrenia until it took over completely when he was 39. My siblings and I are in the same boat as all of you are. He is going to be served with eviction papers so we can sell the house he lives in. Cruel, right? But that money will go to pay for our mothers dementia care in assisted living.
I have made peace with the fact that I don't know what will happen to him. I don't have contact with him, he and I had a verbal argument that turned physical( as the police put it). I'm afraid of him.
So I am in complete agreement with this article. Early intervention is going to help young people. It will help their moms who so desperately love the child and would do anything to help them. But it is not going to help us families who knew our family member as a care free child and now see the disheveled, smelly, unsocial person they have become.
One change for me is, I no longer call him schizophrenic . Say that word and people recoil, picturing a guy with a rifle on a train. I try to explain that he has emotional, physical and mental difficulties. Let them meet him and make up their own minds.
And lastly, please seek help for yourself. Therapy after my attack was the best thing I ever did. The scariest too. But I think I am a better person able to deal with my family situation. Love to you all.

NOV, 26, 2015 07:12:43 AM
Pamela Gholston
We need to make sure our family members receive the diagnosis of
Agnosia which falls under several different categories which causes full blown psychosis and throw the patient/family member/loved-one/friend into a full-blown crisis mode. We need Congress/police forces to all be CIT trained and our medical community to address relapse prevention and levels of required medical care in reference to Agnosia. I think the main thing is for everyone to know the signs of Agnosia and know what stage of treatment and type of accepted medical care is required at this stage of the illness--this would illeviate the pressure of an ill patient who cannot make decisions for themselves to receive appropriate medical care--just as a heart attack victim, stroke victim or epileptic patient.

NOV, 26, 2015 06:19:59 AM
Mary Mosegard
The key to the above study is early intervention. We need to educate ourselfs and the public on how to deal with our loved ones when they have symptoms of psychosis. My heart breaks for all the families with loved ones who suffer with mental illness. I too have a son with schizophrenia. While our laws don't allow us to "force" someone into treatment, we do have NAMI. Getting involved, learning about your local city and goverment resourses. Educating ourselfs with all NAMI has to offer. This has been the best thing I can do for my son right now. There is hope. It's up to us to be prepared when our loved ones need us. This is something I can activlly do for everyone suffering with mental illness.

NOV, 26, 2015 03:05:29 AM
Concerned Sister
To the mother's and families looking for support, click on Find Your Local NAMI. I have found family support groups and contact info for people who can help. I wish there were more advocates and information for families supporting individuals with mental illness, especially schizophrenia. It is hard and not easy but I know you are doing a great job just by looking up info and reading articles trying to learn more. Good luck. To the world you are one person, but to one person you are the world.

NOV, 26, 2015 02:49:03 AM
Rebecca Humble
They used to say perhaps our children would finally be free from the psychotic state when they are in their 60s. It can happen sooner.!It's up and down, like the waves in our oceans. Give your kiddults hope : )

NOV, 26, 2015 01:41:41 AM
Wow. Your comments make me question the ability do Nami and other organizations doing more than raising awareness.

NOV, 26, 2015 12:07:49 AM
James E Turner
I am diagnosed as paranoid schizophrenic. My life was periodically a mess for most of my youth and middle age. About 20 something years ago atypical antipsychotics were prescribed and my life through mindfulness in all I do has lead me to be an ordinary man except for residual symptoms which I manage with rational scrutiny. I pay attention to my symptoms and reflect on their occasional beauty and depth of feeling but do not let them control me. I am almost 70 now and because of checkered work history I get a minimal Social Security check and life is a finical struggle with menial jobs because of my age. I have good mental health care... I just need a good job to pay my mortgage so I can keep the home I love and not end up on the streets homeless again as I was so may times when I was ill. If anyone can offer help with an income please respond. I am well educated and have had many different positions successfully through the years all ended in a relapse... but now I have had no relapse in over twenty years

NOV, 25, 2015 11:17:17 PM
Jean Fisk
My grandson developed schizophrenia 2 years ago. He has been 5150'd 11 times but never kept and treated. During one episode he threatened to kill his mother and burn the house down. The next day the treating psychiatrist told his mother he was just bored and needed a job. He was sent home in a cab with no warning. She was told on another occasion she needed to be firm with him and make him behave. How do you make a 27 year old schizophrenic behave - give him a time out? He is now self medicating with meth. We get no help from any source. I have contacted by phone, e-mail and letters everyone listed in the mental program for our area to no avail. It is so hopeless.

NOV, 25, 2015 10:07:59 PM
Victoria Gregg
Victoria and our network of professionals and families are addressing these issues as we speak. There is hope and sound research that supports effective treatment strategies for our loved ones. Please do not give up!

NOV, 25, 2015 10:00:57 PM
Sally T.
There is hope. My 31 year old son is a lawyer with schizophrenia. I had to move him in with me 2 years ago but we finally got him stabilized on Abilify and he also sees a counselor. I am hoping he will find a job but he needs a caregiver. He is a kind soul also ... he just needs a lot of help. I took the Family to Family 12 week class through NAMI and I found a wonderful psychiatrist.

NOV, 25, 2015 08:59:21 PM
Mary Edgerton
I think the only way is to inbellish and get your son in jail. They know how to treat mental illness. Then get him into the state mental hospital to be treated. Hope that will help you. It will be hard, but to commit him can maybe keep him long enough to get the medication right. The medication takes a long time to work, and the right medication is hard to find. May take seven different tries and the one will be the miracle drug. There are hundreds of antipsychotic drugs on the mark and some make you extremely worse. Keep hope and the right medication will be the answer💕

NOV, 25, 2015 08:57:23 PM
Nancy Gillespie
I am the grandmother of A 24 year old grandson who is also now homeless. I also feel my hands are tied because of laws that make it impossible to find him because he is over 18 and neither the police or hospitals will tell you where they have taken him. He should be in a mental hospital getting care. He is no longer in the places he usually goes and we can't find him. This is so heartbreaking.

NOV, 25, 2015 08:31:53 PM
Valerie West
It is not hopeless if you can get help. I have begged for help for the last 9 years. We need to be able to step in when our adult children are not able to help themselves. I live in fear that when I am no longer able or alive he will have no one to keep him safe and off the streets.

NOV, 25, 2015 08:23:34 PM
Deanna, have you tried obtaining a mental health warrant? This is when you go to a judge and say your son mY harm himself or others and he wil. Be taken to a state hpsychiatric hospital. Don't give up! Keep reading the NAMI information and keep educating yourself. Prayers!

NOV, 25, 2015 07:59:20 PM
Frances Musgrove
My 33 year old son suffers from severe schizophrenia along with substance abuse. I find myself constantly dictating his obituary in my mind. He takes medication but it isn't working.

NOV, 25, 2015 07:57:28 PM
Theresa Kitts
I have some really serious issues the court system is trying to take my son cause they don't understand his illnesses

NOV, 25, 2015 07:29:53 PM
Parents can get legal custody through the courts. Petition for it. NAMI should tell you how to do this.

NOV, 25, 2015 07:27:17 PM
betty latimer
I want to tell you that you can recover from psychosis. I had a psychotic break when I was 20 and I got into the right programs. I connected with recovery,Inc. Which helped me through difficulties and two wonderful young ladies who visited hospital and asked if anyone wanted to go to church. Through those two connections, and taking my medication on time, I learned how to use my abilities to live through hard times. BTW, the church supported me wholeheartedly.

NOV, 25, 2015 07:05:44 PM
I have schizophrenia, but I had to come to terms with it. I had to really understand what that meant for me. I was able to come to terms with it when someone I trusted and respected told me my diagnosis. For me it was a female psychiatrist at a homeless clinic. When she told me I knew I was a person with schizophrenia and I needed help.
I trusted this female psychiatrist and I was able to get help and go home with my foamy. Sometimes it takes someone we trust and look up to to help us. It could be a friend, uncle, parent, teacher or doctor. I'm interested in learning more about RAISE, and I'm all for alternative treatments. I'm really grateful for NIMH, they are very helpful.

NOV, 25, 2015 06:57:31 PM
Ernest Hemschot
IOC should be a big help for everyone. It will get many into mandatory treatment.

NOV, 25, 2015 06:26:15 PM
Rev Tama Bell
So sad...they just NOW see that RAISING the amount of Support for seriously mentally ill person's are needed??? AOT, ACT services in NYS are almost impossible to get, and in our case, Donna Hall, Ann Sullivan and John Allen from NYS OMH made sure that my son could not get ANY appropriate services before he went into prison. Their field office personnel told me "if he commits a crime he will be able to get better help". So what happens, he commits a crime and next thing you know they change his diagnosis so they don't have to give him intensive treatment. OMH in NYS is broken, and needs fixing, and it needs to begin by INCREASING SERVICES in the community. The other part of this is to STOP imprisoning Mentally Ill persons, and begin utilizing the services that are there, and INCREASE the services those with serious illness.

NOV, 25, 2015 06:24:43 PM
Mary-Jude Fox
I have to agree with the others....it is a hope filled article, but my son is in jail and has been for 9 months and there is no counseling or psychiatrist to help him, just over medication. We as parents have no rights to get them the proper help they need, even when we ask what can we do.

NOV, 25, 2015 06:21:44 PM
jeff simpson
I was diagnosed with sz about 34 years ago and back then the research said that there wasn't much hope and to take your meds and live on Social Security. Now with the support systems and better meds recovery is very possible. I salute the young woman who came forward and put herself in the spotlight to highlight that recovery is possible. Along with the meds, therapy, and a powerful support system including friends and family I feel very good. Good luck to all my peers!

NOV, 25, 2015 06:14:40 PM
Thanks for article and clarification about the one in the NYT. We need federal, state & private funding for these successful programs. Also, a clear physiological biomarker for this tragic ailment.

NOV, 25, 2015 06:09:02 PM
My heartbreaks for the mothers who commented on this article. In this day and age and in this country there shouldn't be one untreated homeless mentally ill person however I am not so naïve! It angers me that these mothers are left with broken hearts day in and day out! I too am a mother of a mentally ill son. I fight for adequate services, medication, treatments, therapies etc. On a daily basis here in New York! I'm furious because I read name was not helpful..the police can't help... its a disgraceful!

NOV, 25, 2015 06:01:58 PM
deb harpster
to each of the previous parents who have made comments (and those that have not) and feel the same powerless-frustrated-anger that we do, CHANGES HAVE TO TAKE PLACE IN ORDER FOR OUR LOVED ONES TO GET THE HELP THEY NEED AND DESERVE. you/we are not alone! the heartbreak you describe is the same that we have experienced everyday for years now. NAMI's "family to family" program educated us about mental illness and we are grateful for the support and training. however, help for our loved ones (who are so sick) is nil! "getting" a 51-50 hold placed, even for 72 hours, has become a joke. hospitalization is so challenging that even when medical assessments determine a patient is experiencing a psychotic break, there are NO beds for them to receive care. we are discouraged and see no light at the end of the tunnel. until there are laws to protect the people who suffer with mental disorders and facilities to house and treat them for their own good, as a culture, we have failed to take care of our own citizens. no one asks to live with schizophrenia and no one should be tossed out in the street to fend for themselves, especially because it is impossible to do so.

NOV, 25, 2015 05:58:47 PM
Zeda Williams
Our son is 35 yrs old & was diagnosed schizophrenic after we had to call 911. He was arrested, spent 30 days in isolation in county jail then sent to Steilacoom for 90 days. He went thru jury trial and ultimately found not guilty on 2 felony charges stemming from the arrest. He's been on medication, and until recently, had his own place and a job. A month ago, he stopped taking his meds. Again, the voices, paranoia, anxiety, pacing and anger are increasing. We can't make him take his meds or see his Dr. or even know when/why he's seeking medical treatment. He's going downhill and we're afraid for him. On night last week, he left his truck at our house and walked away. Where will he go? I fear we will find him in a ditch somewhere dead. Our son wants to function in life, he likes to work and has always had a job (although they don't last long). He needs a program where he live, work and socialize without sigma; where he can be successful, contributing member of society and feel good about himself.

NOV, 25, 2015 05:58:14 PM
Ewa Seiler
Early? How do you help those who ARE NOT EARLY! And yes, how do I get help like this for my son.One in a thousand gets this kind of care. The rest suffers in silence!

NOV, 25, 2015 05:46:04 PM
I am actually pretty happy that there aren't laws allowing parents to step in and enforce treatment for their children. I feel that I am pretty healthy now, and my parents were a big part of my return to treatment (a lot of this is because I rely on them emotionally and financially), but most of the progress I've made was in coming to terms with the disease myself. When I see parents so concerned with their children it flabbergasts me, because I think of how my parents must have felt, and maybe still feel, though I was usually focused on myself. I think what comes to mind for me when I think of enforcing care is the old practice wherein husbands could have their wives committed to insane asylums, where they stayed until death. I think that medicine is moving away from that is compelling and makes mental healthcare more attractive to people with mental health challenges.
I'm happy to hear that there is something new for early treatment for schizophrenia. The beginning was the worst part for me and I definitely did not see a lot of people one on one, so I say give it a try and if it works great. I think one of the most important things to do early is to give people information about the disease and symptoms that they may or may not have. It can be really easy to get swept up in symptoms like thought broadcasting and ideas of relation; knowing that these experiences (which can be very confusing) are common and can be treated. Engaging in a dialogue was always hard for me, so one on one talking would be a challenge but very beneficial.

NOV, 25, 2015 05:42:25 PM
Jill Larson
Our state has the Program for Aggressive Community Treatment (PACT) program that is partially funded by the federal govt. The program provides housing and supervision a couple of times a week along with six-month goal-setting sessions. My son lives independently in an apartment. However, his symptoms are so persistent that the medication is barely keeping him competent enough to eat and sleep. His situation is a long way away from recovery and a semi-normal lifestyle. So while there are programs available, the existence is very inadequate to expect our son to learn life skills living alone.

NOV, 25, 2015 05:42:14 PM
Jim Malmquist
The courts have a simple criteria in determining whether your adult child will be subject to your guardianship: 1. Is he a danger to
himself? 2. Is he a danger to anyone else?
If he meets either of these criteria, with a Court Order naming you as his guardian, you can step in and force him into involuntary treatment. Seek legal assistance from an attorney specializing in mental health issues to explain the process (and costs) to you.

NOV, 25, 2015 05:36:09 PM
Becky Stewart
My grandson was in terrible shape until he was finally accepted into a residential facility. What a blessing that has been. It is wonderful and he is functioning so much better where his meds are monitored and he attends day treatment. He is supervised by a wonderful crew. There needs to be many more of these facilities.

NOV, 25, 2015 05:30:03 PM
Shelly Quigley
Is there a PACT or ACT program in your area? I believe you can commit someone to that program--they have kept my daughter out of the hospital and off the streets for the last 8 years. Of course, it helped that I bought her a condo with the savings from my last job. We paid $45,000 for a small efficiency. She should not live alone but won't go to a group and I won't live with her; she loves to fight and argue and I can't take it any more.

NOV, 13, 2015 04:06:39 PM
Tamara Lacey
I feel similar to the mom who posted the prior comments. My 40 year old son is in a similar situation & I have watched him go down hill for the last 20 years because there are no laws to support parents stepping in at some point to enforce treatment. My son cannot live adequately on his own and he is too disruptive & unpredictable (anger, voices, threats toward me) to live with me. He should be in a comprehensive residential treatment program, at least until he is stable and can demonstrate enough life skills to live on his own. Instead he moves around all over the nation and lives in shelters and is in and out of jail, even though he has a known disability and was getting SSI benefits (which can easily be restored). He has progressively deteriorated and WE NEED LAWS TO MAKE IT EASIER FOR FAMILIES TO STEP IN when their loved ones are living in the streets not knowing how to take care of themselves and have no consistent treatment plans and medical care.

NOV, 02, 2015 03:37:33 PM
Linda M Lighthall
How does one go about fi ding this kind of help? For my son.

NOV, 01, 2015 08:43:40 AM
Deanna Edmondson
I read all this hope but is there really hope my son has scizophraine. He is so lost he want shower he wont take meds he wont go into hospital i can get proper help from anyone im so afraid he's gonna die on the streets..so is there really hope..i have reached out to Nami with no response the police say that cant help just move him along he's not wanted here. Crisis says he doesn't meet criteria...and the law in California wont allow me as his parents to step in and force him into treatment to save his life...my son Jeffrey is a kind soul with no hope because i cant find any....heartbroken mom...

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