I generally publish a blog from my files each Friday. However, I have been invited to participate in a forum entitled “After Newtown: A National Conversation on Violence and Severe Mental Illness” on March 5th, before an investigative subcommittee of the U.S. House Committee on Energy and Commerce.
I mentioned in last Monday’s blog that Reps. Tim Murphy (R-Pa.) and Diana DeGette (D-Co.) are holding the forum and I’m thrilled to report that Pat and Debbie Milam also have been invited to give testimony. I wrote about the death of their son, Matthew, in a blog entitled: A Father Grieves: No One Listened to Parents.
Along with my formal invitation came a list of potential questions that might be asked at the forum, which will begin at 10 a.m. in Room 2123 of the Rayburn House Office Building in Washington D.C. and is open to the public. I don’t know if it will be covered by C-Span but hope it will.
Okay, now is your chance to sound off. Here are the questions:
Participant Questions:
1. In what ways is mental illness more — or less — treatable than other serious medical conditions?
2. What are the greatest obstacles to seeking treatment for individuals suffering from mental illness and their families?
3. Among individuals with untreated and severe mental illness, when, if at all, is violence — directed at the self or others — most likely?
4. What is the record of federal state, and local programs geared towards improving health outcomes among individuals with severe mental illness?
5. What are the most effective federal, state, and local programs for prevention and early detection of severe mental illness in children and young adults?
6. How can federal programs be improved to reduce barriers to access and improve outcomes for individuals with severe mental illness?
I am eagerly awaiting your input.
About the author:
1. I think it is important to drive home that mental illness is very treatable, but often more complicated to treat than physical illness because the brain is such a complex organ. There is no “magic bullet” pill and it often takes years to find the combination of pills, therapy, and lifestyle changes that work best. Therefore, funding for improved treatment options is crucial because we are still figuring out what works and what doesn’t. On the other hand, existing antipsychotics and other classes of medications can be very, very helpful to many individuals, but they are often prohibitively expensive and therefore almost impossible for many to access.
2. I think this is the most important question in this list! There are many barriers, but I think the biggest barriers are legal ones. Often, an individual’s family is who petitions for their mentally ill relative to get help. Sometimes the mentally ill individual is so psychotic that he/she cannot trust doctors in the way he/she needs to trust them in order to get help and the family tries to help their ill family member get the help he/she so desperately needs. Unfortunately, unless that individual is suicidal or homicidal and demonstrates as much actively, there is little many states can do. Another huge issue is stigma; often the mentally ill individual does not try to get help because the stigma is so great that he/she fears the label he/she will get if treatment is sought. I think both making it easier on families to get help for their family members and public education programs to cut down stigma could be very helpful in making it easier to get help. Of course, the third issue is how insurance companies view mental health. It is often much harder to get treatment for a mental illness, and much more expensive, than it would be for a physical condition. This discrimination needs to end. Very recently, my mother was denied insurance because of a previous diagnosis of bipolar disorder, and very soon after that, she developed a physical condition that she now has to pay out of pocket for because the insurance company refused to cover her.
3. Violence is almost impossible to predict. In fact, the most reliable predictor of violence is past violence. I think violence rates vary depending on the diagnosis. Someone with schizophrenia may act out violently if they are hallucinating or delusional and are being cornered or perceive being cornered by authority figures. They may be trying to protect themselves. People with mood disorders often are violent toward themselves as a way to end or numb the pain. It is impossible to accurately predict violence and our energies need to be more on treatment than an impossible prediction game.
4. PACT teams have been amazing! Institutionalization has often failed, but PACT teams have shown to be quite effective in helping severely mentally ill people get back on their feet. These comprehensive, wrap-around-like programs give individuals support in every aspect of their lives and it really helps boost confidence and encourages compliance in treatment.
5. Residential programs rarely work. I think intensive home-based treatment and out-patient therapy, combined with a lot of family involvement, is key.
6. Making it illegal for insurance companies to call mental illness a pre-existing medical condition would be a good start! Also, making it easier for family members to get help for their loved ones by taking out the “imminent danger” part of the criteria. I think it is important we don’t abuse the system and go back to a time when poor people were institutionalized to get rid of them, but I think if it was required that three mental health professionals interview the individual and the family members and all three come to the same conclusion that this individual needs help, there should be some program that mentally ill individuals could utilize to get help. I also think increasing funding to PACT type programs would be very helpful because those communities have had huge successes in dealing with severely mentally ill individuals.
1. I think mental illness could be more successfully treated with greater value placed on they opinions & input from they people experiencing mental illness.. Valuable insights often unheard.
2. Great obstacles faces are a disbelief of family members that their loved one may have a form of mental illness, making it more difficult for they person experiencing illness to accept &
access help & support.
Another obstacle is the difficulties communicating an understanding of medication with Doctors.
3. When people in crisis periods are left unsupported.
4. I can’t be sure, I only hear of increasing cut backs to funding.
5. Programs run for kids with parents of people experiencing mental illness, enabling them to communicate & gain knowledge of their views & experiences & giving them skills to recognise their own mental health throughout life.
6. By empowering the person through education, understanding & support of their mental illness & allowing them them confidence to take on more self managing skills.
1. I think that it is important to emphasize that treatment for mental illness, particularly severe mental illness, must often be a complex, multimodal, team-based affair. While the medications are good and can be very effective, they are only part of a comprehensive treatment plan, and all aspects (medication, therapy, occupational and social work support, etc) need to be available and covered if we want people to do well in the long run.
2. a.) Legal, that there is no way to get a person into intense treatment unless they are a danger. I have found that even people in acute crisis, who truly need inpatient stabilization, have trouble getting approved for inpatient treatment unless they are acutely suicidal or homicidal, and that leaves these patients and their families feeling helpless. (Or, more than once, patients feeling that they need to threaten to kill someone (often themselves) for others to see that they truly need help, which can lead to tragedy. b.) Insurance plans that require a patient who has a severe illness to “fail” a less intensive treatment level before approving the next level of care, even when the treatment team and the patient agree that a more intense level of treatment is needed now given the severity of the problem. c.) A lack of available inpatient beds/space in care facilities. d.) The lack of insurance coverage for long term intensive treatment for patients who need more help, unless you are self-pay and have ~$500/DAY it is often impossible to get access to the kind of intensive, holistic, care which helps a severely mentally ill person transition successfully to be independent. e.) Lack of transitional housing and other long term support programs, leaving families with the choice to either have a severely mentally ill family member in the home (where they can be disruptive, dangerous, and are not getting the help they need) or allowing them to be homeless, the risks of which are obvious and overwhelming.
wonderful comments with recurring ideas, showing how common the issues are!
1. Mental illnesses are in some ways more treatable than other serious medical conditions. If a medication can be found to treat the person’s particular illness, then that person can be restored to sanity with few problems. All a person has to do is take his or her medication to stay in touch with reality. Alternatively, one of the symptoms of mental illness is a relunctance to believe that treatment can help, or that the mentally ill person even needs help.. In this case, I believe that medication should be forced on in serious, potentially violent cases, until the person realizes that treat ment is helpful.
2.The greatest obstacles to seeking treatment for mental illnesses are ignorance of what mental illnesses are and how they present–this information should be taulght in high school; and the stigma attaching to admitting that you or a loved one has a mental illness must be eliminated.
3. Among indiividuals with untreated and severe mental illness, violence is most lilkely when the person feels that he (mostly he) his world is going to be interfered with in some way, such as a parent refusing him shelter anymore, a wife leaving him, or someone forcing treatment.
4. The srecord of government programs toward improving heath outcomes of those with severe mental illness can be good if the individual seek treatement. However, the person must want treatment, must seek it out, must be willling to deal with red tape, and deal with frustration. In my case, after being stabilized by a county mental health center, I was dropped by the program because I was “too stable” to be helped by it any longer. I had to find care in the private sector, which, according to what I can afford, is not nearly as good. I can only hope to remain stable.
5. The government has not programs to prevent and detect mental illness. In school and the community signs of mental illness are ignored and no one does anything proactively to seek treatment for even an obviously mentally ill perosn. (Virginia Tech) If anything, they are bullied.
6. Emergency doctors can be better trained to recognize mental illnesses and to intervene appropriately. Emergency teatement for those in crosis should be offered free and be accessible. At this time, very few people even know how to access mental illness treatment in a crisis. Perhaps a hotline, like a suicide hotlin e, could be set up to help patients and family members with information when they are faced with a crisis. Laws should be passed to get the mentally ill out of jail and into treatment. All of this requires that stigma be overcome; that requires an education program by the government.
The mentally ill are the most descrimated-against people in the country. Who else goes to jail for being sick? Who else loses their jobs for being sick? Stigma is one of the basic problems that keep people ill and congress (if it were doing anything) could do something about it through education and example. I had a “friend” hang up the phone on me when I told her I had just been released from a hospital, a person who was in the same voluteer group said that I should never have been allowed to join the group because I was mentally ill, I lost my job because I am bipolar. I insist on being open about it, but I am retired and am able to let people know I am mentally ill without affect on my income. I also write books about being bipolar; again, I am free to express myself because I have Social Security. Stigma is the most crippling aspect of the illness.
Hi Jane – I would love to read, or purchase your book(s). I am a writer also, with bipolar, who is not beyond seeking direct communication. Perhaps you may post more info…
My list is too long for on the job and volunteer discrimination over the years. Stigma, definitely is at the top of the list for reasons many of us w/ MH illnesses cannot progress, socially, professionally, etc. I am pretty much forced into retirement because of it. Yes, we all need to speak up together, and form some sort of collective unity of can-do recovered mentally ill!
Maybe someday the mentally ill will stand up on their own, as an
independant well organized coherent group before Congress.
Will look you up in the library.
Sugar and Salt; Reboot: A Novel of Bipolar Disorder. Out this summer, Flying Buttresses: A Novel of Bipolar Disorder.
Love the titile! “Flying…” Can’t wait to buy!
Wishing you all the best in sales and readership!
Pete, here are some ideas to consider when deciding upon what you want to say.
Since there is a huge shortage of psychiatrists (especially child psychiatrists), how about integrating primary health care with mental health care & substance abuse? I think a majority of people see their primary care doctors first before trying to see a psychiatrist so educating doctors, physician’s assistants and nurse practitioners about mental illness would make sense. More federal money could provide training programs for local front line professionals deaing with patients having poor mental health. My family member started his mental health treatment with our general practitioner because of the long waiting lists (3 weeks) at the 2 local mental health agencies. The psychiatrist he sees now is paid out of pocket by us because she doesn’t take Medicaid. She is compassionate and talented and my family member trusts her. If he relied on his Medicaid, he would have to see the 1 and a half psychiatrists made avaiable in Cayuga county accepting Medicaid. It stinks! I think the low Medicaid and Medicare reimbursement rates for psychiatrists, physicians and mental health therapists is a major barrier to people seeking access to mental health treatment.
Stigma overshadows everything! Mental disorders are common in our country. Statistics on how many adults and children are affected in any given year need to be elaborated on when presenting information at this forum. Mental illness is as disabling as heart disease and cancer are for millions of people.
The criteria for committment needs to be reworded. Instead of waiting for your loved one to hurt himself or hurt someone else, how about inserting a clause about predictable deterioration as new criteria for involuntary committment. Families painfully watch while their loved ones are decompensating right in front of them and can’t do a thing about it unless harm occurs (something awful happens). While we wait our family members become sicker instead of receiving treatment that will help them manage their disease. Mental illnesses are highly treatable so let’s help people before their psychotic breaks worsen their condition!
I have read Dr.Torrey thinks that focusing on treating the 1% of severely mentally ill individuals committing violence (high profile murderers such as the individuals at Virginia Tech, Arizona, Colorado and Newtown) would help reduce the stigma that these situations have caused for all persons with a mental illness
and their families. These poor people’s stories need to be told to demonstrate how lack of access to services and falling through the widening cracks of our local,state and national mental health system contributed to their fates.
Go get ’em Pete! Thanks for listening.
Terri Wasilenko
NAMI Cayuga County
I am for the idea of family practitioner involvement, and public school/college teacher and staff mental health awareness education.
As my husband was diagnosed and let go from the military for mental health issues, and myself and family of long mental illness histories, we asked our
pediatrician to please watch our children for signs.We self-educated them on
mental illness, and they learned from us, as mentally ill parents, and from family.
Now, they address their own mental health struggles openly, without shame or stigma, and appear to have a no-nonsense approach to mental illness and their willingness to seek, and demand good mental health treatment.
i believe strong supports need to be available to the children of mentally ill parents. It is devastaing for a young child to watch their mom or dad decompensate and fall ill.
From Changemhlaws to Mr. Earley. They had trouble logging in to Disqus so posting for them;
In what ways is mental illness more — or less — treatable than other serious medical conditions?
Mental illnesses are very treatable, but both education and resources for the individual and their family, should be an important requirement of a treatment plan — not just pills. Also, ruling out other deficits, diet deficiencies, hormonal imbalances, etc., should be required testing before a psychiatric diagnoses is determined. Historically, few tests are required before a person is diagnosed. Additionally, not all mental illnesses are the same. An individual who has become depressed or anxious, after experiencing a traumatic event may not require the same multidisciplinary outpatient supports, as an individual who is acutely psychotic, has lost touch with realityand believes aliens are about to kill them or their family members.Hospitals must recognize that a discharge plan should be more than an appointment to see an outpatient provider every 3 months and a prescription for pills! Just as in heart disease — diet, exercise, lifestyle changes are needed to recover, so should be solutions for an individuals with severe and persistent mental illness, SPMI. In other words, individuals with a history of SPMI, who are too sick torecognize they are sick, shouldn’t be categorized the same.
2. What are the greatest obstacles to seeking treatment for individuals suffering from mental illness and their families?
HIPPA, lack of assisted outpatient treatment, (AOT) laws and a mental health system that was never designed to work! The current system is beyond broken. Families should not be forced to turn to the DOJ and criminalize their young sons/daughters in order to obtain a band aide — which might be no more than 2 weeks of inpatient care or worse, a judge’s order to seek treatment for an illness they may not realize they have — through probation. “Would we force a patient with cancer or Alzheimer’s into jail first, attempting to teach them to not have their illness? This approach is essentially what families face across the US”! It should be illegal for a families and providers to turn our backs, due to civil liberties — forcing the sickest to become homeless.
3. Among individuals with untreated and severe mental illness, when, if at all, is violence — directed at the self or others — most likely?
When resources and supports aren’t available. Violence occurs when individuals with ‘untreated’ SPMI become desperate due to hunger, lack of basic needs or inability to be successful in the community. When their ability to think logically becomes impaired, violence can be triggered quickly and can be unpredictable. Additionally, individuals with untreated SPMI may seek revenge to hurt a family member, who isn’t able to help their loved one carry out their delusions or other psychotic beliefs. Some family members become ‘trapped in their fears’— if they attempt to have their loved one involuntary hospitalized, they will become victimized or hurt themselves, if their loved one isn’t held long enough to stabilize. Which is often the case. Legal statues for inpatient commitment laws can force family members into horrific situations and can lead to deadly consequences. Treatment Advocacy Center has a preventable tragedy data base for these families — this alone should speak volumes. Why hasn’t congress listened before now?
4. What is the record of federal state, and local programs geared towards improving health outcomes among individuals with severe mental illness?
Preventive programs for ‘children at risk’, have produced positive outcomes in our state, (Kentucky). However, the track record for adult programs for individuals with SPMI are underfunded, ineffective or misused — in comparisons to programs designed for individuals with developmental/intellectual disabilities. Those who recognize they are ill and are able to request assistance, become an active participant in their own recovery and can utilized programs easier. However, advocates for freedom and choice, too often leave out the other 40% who lack insight to their illness.Sometimes funds from federal grants become tied up administrative or marketing cost for awareness campaigns, etc., than actually assisting individuals and their families who have the most severe cases. It seems grants actually create conflict among advocacy groups, instead of encouraging groups to work collectively. Additionally, navigating state or federal programs — can be a draining and full time job for a caregiver, which result in health problems, lost income or jobs. This creates hardships on the entire family, resulting in additional drains on the welfare or social security system.
5. What are the most effective federal, state, and local programs for prevention and early detection of severe mental illness in children and young adults?
Programs that provide wrap-around services for the entire family. Programing shouldn’t stop for the family, after their children with SPMI aged out of the system at 18! Adequate transitioning is needed between the youth and adult systems. HIPPA Laws have become a huge barrier for families attempting to help their young adults who have SPMI.
6. How can federal programs be improved to reduce barriers to access and improve outcomes for individuals with severe mental illness?
A federal mandated Assisted Outpatient Treatment, (AOT) law should require individuals who are too sick to know they need help, (anosognosia) and often end up in the revolving door of homelessness and frequent incarcerations. Families should be considered part of the solution of the over all treatment plan for both inpatient and outpatient programing. Frequently, family members are left to pick up the pieces and support our very ill family member, yet are rarely considered in developing the treatment plan. HIPPA is to blame in most cases.
Hi.
Yes, HIPPA laws do more harm than good for individuals with mental illnesses. HIPPA laws were initially set up between insurance companies and health care providers to cover their back sides in case a patient sought retribution. There needs to be more flexibility when patients with a mental illness are involved. From the perspective of the individual’s family and friends, this law is a barrier to accessing mental health treatment/services for the person who is sick.
I am in favor of AOTs and glad about the extension of Kendra’s Law until 2015 in NYS.
Terri W.
Mr. Earley, this is from Eleanor Owen, Original Co-Founder of NAMI, who spoke to Senate Ways and Means Committee Last Week:
Here are some other comments and questions for the committee: FACT: America continues to close state psychiatric hospital wards while simultaneously increasing the number of publicly funded cells at jails and prisons for persons with major mental illnesses: FACT:America is the only developed nation in the world that has more persons with major mental illnesses in jail or prison than in treatment hospitals. QUESTION: Do you believe this is morally defensible? Question: What national steps need to be taken to reverse the criminalization of persons with severe mental illness?
Thank you, Eleanor, for your continued dedicated service, from one who remembers the grassroots meetings of the ’70’s.Yours was the first name I heard, back then, when NAMI began in living rooms and college campuses. My mental illness has now been ‘treated’ w/ 3 misdemeanors and several unforgettable jail stays, one in a forensic unit, tho I had little in common w/ murderers. I have a college degree and a social conscience, but am kept out of the work force due to this undesirable history on paper.
One national step to reverse my criminalization would be very simple – expunge my records.I worry that the term ‘serious mental illness’ translates into untreatable conditions for people who are at risk of becoming violent and are a liability to themselves and society.Many who have serious mental illness are intelligent, cognizant and aware that they must learn to manage their illness. I hope a new stigma does not begin. Fact: is that serious mental illness is treatable, and violent tendancies are not neccesarily present in all serious mental illnesses.
Hi. In regards to reversing the criminalization process, I am thinking more behavioral health courts and jail diversions need to be established. I have seen positive results for individuals who agree to actively participate in our local behavioral health court program in Cayuga county in Central NY.
The drawback is the person has to have the clarity to voluntarily agree to all the terms involved in the program. I am thinking court mandated AOTs may help many others.
Terri
1) Severe mental illness, as defined in Community Mental Health Act of 1962, is highly treatable with psycho-pharmaceuticals and targeted therapies. There are treatment-resistant cases, as in any disease, but those are small in number, and often due to lack of treatment initially. SMI is degenerative, progressive, and chronic, currently without cure. With correct diagnosis, early intervention to reduce repeated psychotic episodes, and careful medical titrations, it can be as treatable as any other long-term, chronic illness, such as diabetes. Many experience a complete remission of symptoms with medicine and therapy. Both medications and targeted reconstructive therapies produce chemical changes in the brain to alleviate symptoms.
2) The obstacles to treatment are numerous. Zero medical criteria for diagnosis, relying on symptomology and observation for assessment; Pervasive Cultural Stigma, Anosognosia (lack of insight into one’s illness due to temporal lobe damage), HIPPA regulations that prevent families from interceding (HIPPA Handcuffs), Psychotic Paranoia about Care, The Right to Be Sick laws, Lack of long term psychiatric beds and the decimation of the Psychiatric Hospital System, which while imperfect, afforded care; Lack of Outpatient Early Intervention and Supportive After Care Solutions, Lack of good psychiatric rehabilitative programming for Cognitive, Social and Employment Deficits, Lack of custodial facilities for those most affected, Costs of medication, and the overwhelming management of those medications, 30 day Limits on inpatient health insurance coverage, Lack of separation between situational mental health ‘issues’ and severe brain diseases, Lack of Affordable Housing for the gravely disabled, Lack of priority in Funding and Research, Lack of Social Services to support sub acute care, Lack of Assisted Outpatient Laws (AOT) and the refusal to implement those laws where legislated (Laura’s Law, Kendra’s Law), the complete misuse of SAMHSA funds into the billions of dollars, which focus funds on the most treatable, or situational mental health, and evade or delay treatment of the most severely ill in favor of “business as usual” by selectively treating (even over-treating) those most compliant –their best customers; and finally, the nearly complete legal turnover of the most severely ill to the court and policing systems, which means a patient is jailed before treated.
3) Violence is more often directed at self before others in severe mental illness. Schizophrenia has the highest rate of suicide nationwide and historically than any other single illness or mental condition. 95% of violent acts are committed by persons never diagnosed with mental illness. However, persons with SMI are 2-4 times more likely to be violent than the average person. Violence, even planned, by severely mentally ill persons is always, unilaterally, committed during paranoid and psychotic episodes (hallucinatory or severely delusional in nature) where a patient believes mistakenly that he is severely threatened and must act out of fear or retribution. Recently in PA, a man suddenly stabbed his grandmother at breakfast when voices relentlessly repeated she was evil. There has been no evidence produced to date that indicates Matt Lanza was delusional, hallucinating, paranoid, or diagnosed with a major psychotic brain disease. It’s irresponsible that this discussion comes about only with tragedy and now implicates all brain illness patients in criminality.
4) Most states have very poor records of supportive care and lawmakers do not recognize the difference between mental health issues and severe mental illness (brain disease). Federal legislation has eroded, leaving states to implement their own sets of laws to treat severe mental illness. To date, only two states, New York and California, have implemented Assisted Outpatient Laws, that require the identification, medication and treatment of severely mentally ill persons, despite evidence that these laws work very well for patients and families and reduce violence significantly as the person is never ‘out of care.’
5) One of the most effective programs in place is at Johns Hopkins Bavyiew Medical Center in Baltimore, MD: EPIC, Early Psychosis Intervention Clinic, where a patient who is in early psychosis is correctly diagnosed, then treated with long-lasting injections of anti-psychotic meds on a standardized schedule, provided proven behavioral therapies individually by QUALIFIED personnel, such as cognitive behavioral and dialectical behavioral therapies, and afforded the comprehensive wrap around services needed to avoid repeated episodes and reconstruct meaningful lives: Psychiatric Rehab programming for cognitive and social deficits, nutrition and exercise, supported employment, affordable housing, daily living skills, assistance with social services benefits and disability applications. Patients can be seen at EPIC as early as age 14, and never age out of PRP. Also, the PREP clinic in San Francisco, the EDAPT clinic in Sacramento have a similar team approach to intervention and recovery. These clinics should be adopted nationally as medical standards for care. Oregon has a state-wide program EASA (Early Assistance and Support Alliance) with several clinics established.
6) First, the Government and the Medical Community must reclassify severe mental illness from “mental health disorders” to neurological pathology, where it properly belongs, and completely stop treating them like a “social issue” after a brain disease diagnosis is indicated. It can fund research programs to identify early brain changes when a history of psychosis is present in a family. It can immediately stop all funding to SAMHSA, who misuses funds regularly while the most severely ill are never treated, and filter that money into long term psychiatric care solutions, and psychiatric beds. It can fully implement comprehensive diagnostic services programs and legislate that SMI is treated on a par with other medical issues, by a standard of gravely disabled. It can insist on Assisted Outpatient treatment laws by state, and it can implement HIPPA reforms that would allow parents and care givers to seek care. It must not only use legal means to correct this quagmire, but must remove restrictions where social services programs are available. If you consider that the initial stabilization period is 10 years for a psychiatric illness, programs that are temporary bandaids on long term disease are useless. We are only afforded emergency intervention. Where programs do exist to assist us, the services are disconnected and sparse and require things psychiatric patients to not have, such as transportation: if you qualify for one social program, income or other guidelines often mean you are disqualified for another. Residential and outpatient programs should be insurable, which would allow private insurance to be billed, as has happened with many services for autism and alzheimer’s, for example, as a basic medical necessity for recovery.
Dear Pete:
This is what you can tell Congress for me, as a mother …
We are angry.
You’d better believe it! Mothers are angry — and righteously so. We may be fed-up but we are also fired-up.
We are weary.
After years of fighting for the lives of our very sick children, many of whom are now adults, we still remain strong in spirit and in our mission to secure timely treatment.
We are self-less when it comes to our children.
Our own mental health has suffered because we are 24/7 caregivers and we are exhausted. Yet, Instead of funding our own mental health needs, we demand increased funding for our loved ones with severe illness like schizophrenia and bipolar disorder.
You see, when our children become well, we will be well.
We are picky.
We like scientific terms and prefer “neurological brain disorder” over “mental illness” when referring to our loved ones in legislation.
We are beyond frustrated.
And we are devastated each time we receive “the” phone call from our very sick children from jail, knowing that timely treatment could prevent those calls, yet powerless to do anything about it.
We are doggedly determined.
We must stop losing our children, and our own selves, to preventable tragedies. And we moms try hard to prevent our children from getting caught in either of the revolving doors – hospitalization & criminalization, the process by which behaviors and individuals are transformed into crime and criminals. Our children are not criminals and should not have to become one in order to receive treatment.
And one last thing …
Tell Congress that although we moms may have rocked cradles in our younger days, our present intent is to ROCK THE WORLD! That we WILL find a better path for our children and it will be the path to treatment.
Oh … and that Moms still know best … but Congress should already know that.
Hi. I like your spirit and can relate to what you are saying.
I too continuously advocate for what is in the best interest of my adult son. There has got to be a better way for all persons with mental illness to receive timely and high quality mental health services/treatment than what exists now.
Terri
Please tell them: (1) That because of the frequent psychotic breaks my brother’s illness happens to manifest (paranoid schizophrenia), that I am “the real, true first responder” to serious mental illness, not the police; (2) (When “I fail” to convince the police to bring him to the hospital or a psychiatrist that my brother is decompensating, then “we all fail” and everyone in society (as well as my beloved brother) suffers. There have been serious, life-altering consequences to both my brother and also those people who have inadvertently encountered my brother during his psychotic breaks. (3) He was the nicest, smartest, highly intelligent, well-respected, honest, kind, funny and lovable guy you can imagine before he fell ill at the age of 36 & who had a full, “regular” life before his brain started to malfunction through no fault of his own; that they should remember: “There but for the grace of god… go I…” As we all should. Tell them this is a compassionate call to humanity for all of us, not just those who can’t help themselves…. Good luck Pete and god bless you for all you do.
“There but for the grace of god… go I…” And you, and me and everyone on this planet…. Never forget to remind ourselves that we must all walk in our brother’s/sister’s shoes… in order to make decisions for the highest good for all…
Mental illness is treatable and there are some good medications on the market and in the pipeline but you have to actually swallow the pills and take them consistently which most people don’t do. Now there are choices of fast dissolving meds and long acting injectables that really have helped because you always have a certain amount of medication in your bloodsteam. The big problem in treating mental illness is that there is no standard of care like we have in physical illnesses and one has to rely on the experience of the person doing the evaluations as to the diagnosis and treatment they receive. There are also no lab tests or imaging studies that can be used but I think they are close to having imaging tests that can be used. You need to find a really skilled psychiatrist who knows how to prescribe the right combinations of meds in the right dose which is not easy to do. Insurances are a barrier because they don’t cover certain medications and the same is true with Medicaid and Medicare so access to the right meds may not be possible unless you can afford to pay or have a clever psychiatrist who knows how to get pre authorizations and knows how to work the system. I don’t think there are many cures for any illnesses. I had breast cancer but although I was treated, I will never be completely cured. The same is true with mental illness. One must follow a strict regime in order to stay in good shape in the community and not recycle back to the hospital or have continuing episodes.
I have an adult son who I have been trying to support and help for 21 years. He is stable but has never had the life he planned to have which is a huge disappointment to him and to our family. It is sad to think what may happen to him when we are no longer around to support him in the community. He has an older brother but he will basically be on his own. I also worked over 30 years in the medical field in nursing and radiology then changed careers to work for a large community health dept in California for 12 years helping families learn how to navigate the system including Social Security to get benefits when someone is not able to work. Families really need support and respite which many don’t have.
Families are often in denial about the seriousness of the illness which sends a bad message to their family member who is ill. Their expectations are often too high and the mentally ill family member cannot live up to their goals. It was not that hard to get help if you actually want it from our county mental health dept. but most people with neurological brain disorders don’t think they need help and many do not want it so it becomes a battle with their families trying to force them into getting help before they end up in jail, in the hospital, or dead. No one wants to listen to the families as many so called professionals have the opinion that the families have done a bad job parenting and they are the problem. Plus we ask too many questions which take up their time. When you see signs of someone becoming psychotic, you are sometimes forced to call 911 and try to get someone taken involuntary to the crisis unit and hopefully admitted to a psych unit. All the involunary laws should be consistent throuighout the US but they vary state by state which makes it much harder. Each state has its own Medicaid program which makes it hard to get treatment going from one state to another one where you have to start all over again.
When people are taken involuntary they often end up on psych wards where they are not treated with respect and some of the units are very punitive. My son has asked why he has gotten such good treatment on medical units when he had a blood clot compared to how he was treated when he has been on psych units. People need to be treated with kindness and respect no matter what illness they have. They should not released without a carefully designed discharge plan because they have to have a scheduled follow up appointment for meds and hopefully are referred to a community program like a clubhouse, local daily community center, parital hospitalization program in their area, or residential treatment program in the community until they become stable enough to live in a supported independent apartment or licened group home. They need to be very stable on their meds before being discharged so they have to be hospitalized longer than a few days to do that because the first, second or even the third med might not work or another med might need to be added to the mix. They should also be referred to primary care or their own family practice physician to have other possible causes such as a thyroid disfunction checked out, Being hospitalized in a free standing psych unit is not good because they have no way to elevate any medical conditions that might either add to the symptoms or have caused the symtoms in the first place.
Australia has been a pioneer in early detection and preventive mental health programs. They now have a 10 year Roadmap of Mental Health Reform in place.
The US should check out what they are doing and also what is happening in the UK to see if they have developed something this country should adopt. I referred several people to the EDAPT program at UC Davis in Sacramento with some good results and also to the Prep Wellness program in San Francisco. They brought in psychologists from the UK that were trained in CBT of psychosis which is not generally available here in the US. That type of therapy helps with presisent delusions which are not well controlled just with meds. Kaiser is using the McFarlane Family treatment method with very good results.
I worry about how people with private insurance get the right help. In fact, I have seen how having private insurance makes it harder to get the team approach that is needed for someone once they leave the inpatient hospital unitl There isn’t much available for them. Also when someone is on an inpatient psych unit there need to be staff applying for benefits while they are on the unit so when they are discharged they application has already been made online. If it is done correctly, there should be no need to go to a SS office. There needs to always be a family meeting before discharge to explain what is going on and the idea of the patient not signing a release preventing that is so very wrong. The HIPAA laws need to be modifiied to make sure that proper explanations are made to the family or caregivers before discharge so they understand what to do. A good example is one of the newer meds has to be taken with at least 300 calories of food so the caretake needs to know that as well as the patient who might forget.
Megan’s Law and Laura’s Law are good ways to make sure someone gets treatment in the community when they are unaware they have an illness or need treatment. Mental Health courts are also good when someone gets psychotic and ends up being arrested. The courts need to be more willing to take on the toughter cases and stop cherry picking cases in my opinion. Law enforcement needs to have CIT training and also follow up training. When an incident occurs involving CIT there should be debriefing to find out what went wrong so it doesn’t happen again. Educators, psychologists, primary care docs need to learn to recognize warning signs and know when to take things much more seriously.
We need more mental health locked treatment centers and less jails and prisons which are not appropriate for mentally ill people. It would cost the tax payers a lot less money and keep dangerous, psychotic people off the streets. More funding needs to be available for research, mental health professionals, psych units in full service hospitals, and family counselors who have had experience and know the ropes of how to navigate the systems.
Thanks for your advocacy and good luck with the committee.
Hi. Your post is incredible because it encompasses a variety of concerns that just about all parents experience when coping with a sick child. Thanks for taking the time to compose your thoughts and feelings in this post for me and others like me to read.
Terri
Please tell congress that our country has forgotten about our children, we have left them behind. We need a Ronald McDonald House in every county. Us parents are not Doctors, we shouldn’t be soing medicatiom trials in our homes, we need to look at people with mental illness as their brain is in a wheelchair…….
From just a human perspective, aside from the questions a sub-committee might ask, here is what Congress should also be told about severe mental illness:
As a working single mother for 30 years, I am completely disgusted by the lack of compassion toward the most severely mentally ill by “mental health” workers, labs, pharmacies, many doctors, and lawmakers. I AM NOT A TRAINED pharmacist, police woman, therapist, home health care worker, psychiatric nurse, psychologist, psychiatrist, MD with a background in chemistry, or a chemist. I am not a lawyer or banker, I’m not an administrative assistance, professional scheduler, or office manager. I am not a social worker, insurance claim worker, certified nursing assistant, case manager, or housing specialist.I AM A PARENT.But I am expected to be all of these things, instantly and perfectly, with no formal training, to ensure my child not get lost in the quagmire of disconnected, sparse services, just to establish a modicum of imperfect health for my recovering son and avoid a typical disaster: jail, homelessness, or death. What complete idiocy, how completely irresponsible of the “broken mental health care system” to put this much pressure on a single person. I am expected to work a full time job, parent my children, run a house, and NOW somehow fill all these other roles on my own, as the caregiver of a severely mentally ill child. If I were professionally paid to do every one of these duties at the combined rate of pay they receive, on any given day where I wear several of these hats, our family would not be bankrupt now because of a medical condition–we’d be rich. I do a hundred people’s jobs for free, and in many cases, do them better and with more attention and care than the people who do these things professionally. People call me a “tireless advocate.” No, actually, five years into this, I’m pretty tired.
Hi. I hope you have access to a NAMI Family Support group or a NAMI Family-to-Family Education Program. You are so right about what you are expected to do and with no training to do it.
Terri
Dear Laura, Your post is the condensed version of my life for the last 14 years. My son has suffered from a severe mental illness since he was 17 and he is now 31. I might add that I have had to be a judge, an assistant district attorney, a county clerk, a college professor, and a college dean as well. I have had to sit a a room and explain what mental illness is to all of those people and one time while the Bailiff had her hand on her gun ready to shoot. All my son was doing was asking questions. I have had to be a human shield for my son. A century ago they burned you at the stake; in this century they want to throw you in jail and throw away the key if your brain is broken. Why do these educated people think a damaged brain makes you a criminal? In 14 years I also have not been able to communicate with a psychiatrist either because of the ridiculous HIPPA law or becasue they don’t care, don’t have time or have given up themselves. The doctors which are supposed to be empathetic and trained in these illnesses in our experience have not been of any help. My son is now afraid of these doctors because of all the mistakes they have made. Oh yes, and I forgot to mention I had to be a psychiatric nurse when I saw my son was in shock from the medication they forced on him in the hospital. 105 degree temperature, stiff as a board and covered in a red rash was not noticed by anyone in the ward! Do I want my son to go to the hospital again? I worry about what to do when he has his next breakdown. Why did all of these national tradegies have to be the catalyst for change? We could have warned everyone what the consequences might have been when mental illness is not taken seriously. So add town cryer to your list.
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Hi Pete and friends,
I wanted to just send in a message of support. I think everyone here has captured the details of the needs out there very eloquently and passionately.
I would say that it’d be great to share with Congress what you just saw on your pages here. You put a call out to readers to ask them what you should tell Congress, and you heard from passionate, dedicated mothers struggling everyday in homes from Seattle, Washington, to Baltimore, Maryland, trying to get their children something that every American deserves: treatment and services for illness. They need help.
The system is broken, and then you can delineate all the ways that it is broken.
It was fantastic of you to put a call out–we all have your back. Warmly, Asra
It’s not just mothers posting here, though some have let us know, eloquently, how their lives have been affected by the mental illnesses of their children. Posters also include patients, who also have a stake in what Pete will tell Congress.
Absolutely, Jane. All of these voices are critical and important.
As the committee is of the Depts. of Energy and Commerce, perhaps a more efficient use of Social Security funds could be discussed. Increasingly, over the last 10-20 years, lawyers have become almost required for a mentally disabled person to file and obtain Social Security Disability, or Supplemental Security Income. Many in my neighborhood have waited 10 years after applying, making it up to 15 or more years since diagnosis for an income. The lawyers take a cut of the Soc. Sec. checks, money that the mentally ill could use.
1 Application process could be simplified and do-able by patient and health care team.
2. Homelessness could decrease if every indigent mentally ill person, especially those without supportive family, were at least given temporary Soc. Sec. disability
upon initial diagnosis and hospital discharge.
3. In the ’70’s when psych hospitals were being emptied, each patient was set up w/ Soc. Sec. before leaving. No lawyers, middlemen, or profiteers on the monthly checks.The usual wait was 2-3 months, now its 5 to 10 years.
4. The mentally ill, especially those w/out family or supports, if left w/ no income,
are easily taken advantage of, becoming victims of crimes, or committing crimes themselves. The tendancy for some mentally ill to self-medicate can lead to using drugs, and with no income, selling them.
Thank you, Pete, and may we all see the force of reason win.
The SSI and Disability apps process is ludicrously long and arduous. I have no doubt a sererely mentally ill person could NEVER navigate that application and provide all the data needed to get approved. Marabe is correct! There should be a standard for grave disability and an auto-application/approval process. A case of a patient with kidney failure is assumed on its face to require SSI and SSDI. So, too, should our loved sick children, with NO middle men collecting any pay for services: at a base of 710 dollars a month for disability, what kind of a total creep would take a cut of that?
Regardless of the question, I hope you will speak for all of those with severe mental illnesses who are unable to speak for themselves because they lack awareness that they have a treatable brain disease. Since the members of Congress most likely will not be familiar with the symptom of anosognosia, I hope you will educate them on why this is the main reason people with schizophrenia, schizoaffective, and bipolar disorders do not seek or remain in treatment. And lastly, the most effective, compassionate way to change our broken mental health system is assisted outpatient treatment laws that help engage a person in consistent treatment, often through assertive community treatment (ACT) programs. Best wishes that your voice is heard and that you are able to represent the concerns of those who are most ill and their families who love them.
. In what ways is mental illness more — or less — treatable than other serious medical conditions?
Mental illnesses are very treatable, but both education and resources for the individual and their family, should be an important requirement of a treatment plan — not just pills. Also, ruling out other deficits, diet deficiencies, hormonal imbalances, etc., should be required testing before a psychiatric diagnoses is determined. Historically, few tests are required before a person is diagnosed. Additionally, not all mental illnesses are the same. An individual who has become depressed or anxious, after experiencing a traumatic event may not require the same multidisciplinary outpatient supports, as an individual who is acutely psychotic, has lost touch with reality and believes aliens are about to kill them or their family members.Hospitals must recognize that a discharge plan should be more than an appointment to see an outpatient provider every 3 months and a prescription for pills! Just as in heart disease — diet, exercise, lifestyle changes are needed to recover, so should be solutions for an individuals with severe and persistent mental illness, SPMI. In other words, individuals with a history of SPMI, who are too sick to recognize they are sick, shouldn’t be categorized the same.
2. What are the greatest obstacles to seeking treatment for individuals suffering from mental illness and their families?
HIPPA, lack of assisted outpatient treatment, (AOT) laws and a mental health system that was never designed to work! The current system is beyond broken. Families should not be forced to turn to the DOJ and criminalize their young sons/daughters in order to obtain a band aide — which might be no more than 2 weeks of inpatient care or worse, a judge’s order to seek treatment for an illness they may not realize they have — through probation. “Would we force a patient with cancer or Alzheimer’s into jail first, attempting to teach them to not have their illness? This approach is essentially what families face across the US”! It should be illegal for a families and providers to turn our backs, due to civil liberties — forcing the sickest to become homeless.
3. Among individuals with untreated and severe mental illness, when, if at all, is violence — directed at the self or others — most likely?
When resources and supports aren’t available. Violence occurs when individuals with ‘untreated’ SPMI become desperate due to hunger, lack of basic needs or inability to be successful in the community. When their ability to think logically becomes impaired, violence can be triggered quickly and can be unpredictable. Additionally, individuals with untreated SPMI may seek revenge to hurt a family member, who isn’t able to help their loved one carry out their delusions or other psychotic beliefs. Some family members become ‘trapped in their fears’ — if they attempt to have their loved one involuntary hospitalized, they will become victimized or hurt themselves, if their loved one isn’t held long enough to stabilize. Which is often the case. Legal statues for inpatient commitment laws can force family members into horrific situations and can lead to deadly consequences. Treatment Advocacy Center has a preventable tragedy data base for these families — this alone should speak volumes. Why hasn’t congress listened before now?
4. What is the record of federal state, and local programs geared towards improving health outcomes among individuals with severe mental illness?
Preventive programs for ‘children at risk’, have produced positive outcomes in our state, (Kentucky). However, the track record for adult programs for individuals with SPMI are underfunded, ineffective or misused — in comparisons to programs designed for individuals with developmental/intellectual disabilities. Those who recognize they are ill and are able to request assistance, become an active participant in their own recovery and can utilized programs easier. However, advocates for freedom and choice, too often leave out the other 40% who lack insight to their illness.Sometimes funds from federal grants become tied up administrative or marketing cost for awareness campaigns, etc., than actually assisting individuals and their families who have the most severe cases. It seems grants actually create conflict among advocacy groups, instead of encouraging groups to work collectively. Additionally, navigating state or federal programs — can be a draining and full time job for a caregiver, which result in health problems, lost income or jobs. This creates hardships on the entire family, resulting in additional drains on the welfare or social security system.
5. What are the most effective federal, state, and local programs for prevention and early detection of severe mental illness in children and young adults?
Programs that provide wrap-around services for the entire family. Programing shouldn’t stop for the family, after their children with SPMI aged out of the system at 18! Adequate transitioning is needed between the youth and adult systems. HIPPA Laws have become a huge barrier for families attempting to help their young adults who have SPMI.
6. How can federal programs be improved to reduce barriers to access and improve outcomes for individuals with severe mental illness?
A federal mandated Assisted Outpatient Treatment, (AOT) law should require individuals who are too sick to know they need help, (anosognosia) and often end up in the revolving door of homelessness and frequent incarcerations. Families should be considered part of the solution of the over all treatment plan for both inpatient and outpatient programing. Frequently, family members are left to pick up the pieces and support our very ill family member, yet are rarely considered in developing the treatment plan. HIPPA is to blame in most cases. —- Written by Gina Burns, posted by an computer intern for Pete Earley
Please include this heartbreaking note from a parent in my advocacy group:
“Once, after relapse, when my son told me he was so manic
that he was speaking in a tongue that even he could not understand, dressed in
3 layers of clothes and armed with 2 pellet guns, several hand knives and
sturdy sticks with which to protect himself, he went into a McDonald’s on a 98
degree day, asked for a water, sat down and cried. I asked him, ‘If you could
say anything at a time like that, what would you say?’ His answer: ‘I’d say
‘look at me. No. I mean really…look at me. I’m asking for help in the only
way I know how.’ “These are the children we disdain and throw to the streets. This is our proverbial brother, begging for our help and intervention, literally–the only way he knows how.Tell that sub-committee in NO UNCERTAIN TERMS that lawmakers are responsible for that child’s demise, or chance at health, and they’d better start looking at him. Parents are FED UP.
Pete, Tell them these people are sick and need help. My son has told me people don’t like him and think he is dangerous when he is not. He asks for kindness, compassion, consideration and understanding. He wants to be cured. This disease is not his fault. Give him a chance for humane treatment by doctors, policemen, teachers, neighbors, and shop keepers. Don’t condemn him for being sick. Give him good medical care as you would for victims of any other diseases.
The HIPPA law prevents parents from advising doctors and sharing critical medical information which I am sure could lead to deaths.
It is not uncommon for those w/ mental illness who have self-recognition of it,
to experience a type of aura or sense of pending psychosis. As the mind becomes fragmented, and thought processes unravel, it can become impossible for the person to articulate that they need help.They know they are slipping,and they do want help. Because they are entering a state of consciousness that operates way different than the norm, sitting at McD’s w/ 3 coats, to them, is a direct way of getting help, as they think their behavior will speak for itself, and help will come.
I cannot count how many times I have been on the brink of psychosis, knowing I need help, but instead believing my outward behavior would ensure I would get it.
Once I spent an afternoon walking in a thunderstorm, communing with dead relatives. Soaking wet, I told a family member what I was doing, and tho aware of my history, they let me drive home. Within days, it was law enforcement that intervened, followed by truly messed up MH treatment.
We need public and family education, but how to instruct on the many individualistic manifestations of illnesses that present differently w/ each patient?
Psychosis is very hard to understand; I am just beginning to get a handle on how it works w/ me, and I’ve been diagnosed since 1971.
I share the sentiments of just wanting to be liked, and not feared, and crave also
kindness, consideration and compassion.
But, survival dictates that I must be patient and loving toward all my mental health caregivers, family, neighbors, regardless if they understand, stigmatize, or have very real fears.
No, it is not our fault that some of us have mental illness. We are victims who have been raped of our sanity, ability to think and reason; a fate not wished on anyone.
Because I feel both blessed and guilty for being able to deal w/ it, my heart is geared toward those who are defenseless, and havn’t or won’t recover their health. These are the folks our legislative gov’t needs to go to bat for. I say, w/ my serious mental illness, that Providence has given me intelligence and insight into,
that there by the grace of whom, go I.
I hope today’s meeting is just the beginning!