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Families of people with mental illnesses say legislative changes are needed

Monday, October 25th, 2010



Legislation pending in Harrisburg could make it easier to order people to get treatment for mental illness. Pennsylvania law makers heard testimony on the proposal in May – but no votes have been cast. Some families are getting desperate to get the bill moving.

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For Julie Pinto and her husband, the nightmare started on Father’s Day weekend. Her 25-year-old son, a college student, came to visit, and was clearly delusional. He said he was a psychic, and could read other people’s thoughts. Pinto says he also was behaving erratically:

Pinto: He would not take a shower, because he thinks there are chemicals in the water, which is going to kill him, and also, he wrote this essay, 14 pages, writing about government how they were after him, and trying to kill him

The Pintos eventually had him committed to a hospital – but after three days, he was out, and getting worse. After two failed family interventions, they went through the same process, this time, a judge ordered him to get outpatient treatment once released from the hospital – but Pinto said nothing happened:

Pinto: Nobody followed up on it, he never took any medication, neither did he go to any doctor to be seen.

The legislation pending in Harrisburg would make it easier for families to get loved ones into treatment, and also assure follow-up by adding oversight, says Jeanette Castello. She is an advocate and mother who has been in the same position as the Pintos.

Castello:
What we are really talking about are the individuals who lack insight, who have something called anosognosia, which means they have total unawareness of their need to be in treatment, and this would assign a treatment provider much more quickly, and assure that the individual remains in treatment.

Castello is hoping the bill will get a vote next month.

Julie Pinto says she has been spending her days on the phone trying to get help for her son. While many organizations are willing to help – none can force him into treatment.


15 Comments

  • Bright says:

    My stepfather has a mental illness and the pain of this illness has caused our family to cry everyother day.He has become very delusional,mean and will not take a bath.We have called Community Service Board many times and the Police No-one can help.He once kicked me so hard on my lower leg and we called the Police and they called the CSB.He was taken to a treatment center,where he told us and the Nurse that he would kill us.They let him stay one more day and released him.He needs help.He will not take his Meds.This has and is a living nightmare.There is so much more,Please any sugguestions.

  • Crystal says:

    Prison does nothing for those suffering with mental illnesses, Prisons are merely a warehouse sheltering, that’s it. Department of Corrections? Are they serious? Department of Rejections is what they should name it. My son has been sentenced twice since 2008. I begged the courts to place him in a Mental Health Facility instead of prison, it was not even acknowledged here in Florida!! My son suffers with schizophrenia, drug abuse and addiction, paraplegia, in a wheelchair, depression. Something really needs to give. With all the money our govt. spend on lavishly built structures, the citizens in dire predicaments are paying the costs in their quality of lives. This Country and the ones making the laws, and regulations regarding the unfortunate ones that need the most care are absolutely atrocious!

  • Alice Fitzcharles says:

    Our son has had mental illness for 25 years (half his life). He went through two jailings and two hospitalizations (one for two years)in order to receive effective treatment, which took place in another state where the law is different than in Pennsylvania. In PA he probably would still be in prison, receiving treatment only when he chose to have it. Fortunately, in another state he receives treatment and is off disability and working and living on his own. He finds a degree of joy and satisfaction out of life. Pennsylvania needs SB 251 and HB 2186 to become law so that more people with severe mental illness could receive treatment and work on recovery and improve their lives. This state is a terrible state in which to have mental illness. Check with Treatment Advocacy Center to find out what states do a better job of treating those with anosognosia and if possible, move to another state! Otherwise continue to advocate for changes in Pennsylvania’s outdated law. Our loved ones deserve treatment, however severe their mental illness.

  • Doris A. Fuller says:

    The existing mental health system has “failed” people with severe mental illness because it doesn’t exist. The psychiatric hospitals and inpatient beds that once served the most severely mentally ill have disappeared, and the community-based services that were supposed to replace them for the most part never materialized. The heartbreaking stories posted in response to Maiken Scott’s story illustrate the human cost of this policy of neglect. Assisted outpatient treatment is one strategy for addressing this gap and is certainly a more humane one than the one opponents of AOT support – letting people too sick to get services for themselves make the “choice” to avoid treatment even if it means they live on the streets, eat out of dumpsters, freeze to death in a delusional state, are victimized and/or commit suicide.

  • advocate4change says:

    My daughter would have easily met all of the criteria for assisted outpatient treatment as the proposed legislation, HB 2186 and SB 251, would require. Instead, after many crisis situations caused whenever she stopped medications when released from a hospital, she ended up in the revolving door of repeated hospitalizations. If cost is a concern, effective, consistent treatment in a community under a court ordered AOT is far less expensive than hospitalization or incarceratio, the unfortunate result of untreated mental illness.

  • Mark M says:

    My sister lost her life because of anosognosia. She stopped taking her meds for schizophrenia a few years ago and deteriorated quickly. She did not believe she was sick and thought everyone around her were the sick ones. She was extremely delusional and it was incredibly frustrating and wore on the whole family. She froze to death on a concrete floor in the back of her fathers old house she broke into thinking it was still hers. Please read her story in our local paper that they did after her death. http://www.readingeagle.com/article.aspx?id=142135.

  • Linda Vida says:

    My son has a court order for injections monthly by the CMH of Michigan. He moved from one county to the other in the same state. His last injection was in August 22 2010..the new county has his records, knows the history. I took him to the CMH for an appt Oct 4th 2010..to date no one has come to see about him. He lives in his own place/alone. We/family try and visit him and have noticed his meds are wearing off. He also has Anosgnoisia. He is talking as if the state is a joke. This worries me that he will soon be arrested, and then lose his home and end up homeless again. What can anyone do to make the CMH accountable??

  • Linda Vida says:

    My son has a court order for injections monthly by the CMH of Michigan. He moved from one county to the other in the same state. His last injection was in August 22 2010..the new county has his records, knows the history. I took him to the CMH for an appt Oct 4th 2010..to date no one has come to see about him. He lives in his own place/alone. We/family try and visit him and have noticed his meds are wearing off. He also has Anosgnoisia. He is talking as if the state is a joke. This worries me that he will soon be arrested, and then lose his home and end up homeless again. What can anyone do to make the CMH accountable??

  • Nancy says:

    For over 20 years our son has continually experienced lack of insight (anosogonosia) – how would you handle watching your loved one being homeless…in jail….disshelved….unable to bathe….not making verbal sense due to paranoia and delusional thinking….threatening w/religious delusional thoughts in which to die and then be in a better place…..with his inability to even be able to recognize he has a brain disorder the legal and medical systems have kept his family from doing what they know is in his best interest….that is assited outpatient treatment….the only advise I can give to families is become guardians ASAP after your loved one has been diagnosed w/a mental illness in which they are UNABLE TO RECOGNIZE THEY HAVE A BRAIN DISORDER…..follow the money of your CMH’s and see how much is put out for the SMI compared to others……its quite an eye opener….now legally who is going to do anything about it????? THIS IS A NO-BRAINER….THE SERIOUSLY MENTALLY ILL (MEANING THOSE W/LACK OF INSIGHT-ANSOGNOISIA-SHOULD HAVE THE RIGHT TO BE TREATED WITH COURT ORDERED OUTPATIENT TREATMENT RATHER THAN TO BE HOMELESS…IN JAILS/PRISONS AND PLACED IN DANGER!!!!!!

  • Susan says:

    Did ANYONE ask this boy what happened to him before he came home from college? What his family life is like? Every 30 years or so the “cause” of mental illness flips from nature to nurture and back again – anyone with half a brain can see it’s both. We must loosen the grip of big pharma on our thinking when it comes to treating our “loved ones”.

  • Joe says:

    It is paradoxical that families look to AOT legislation when the existing mental health system has failed them. Mental health legislation is frequently predicated on the misguided optimism that legislation alone will lead to a solution. The underlying assumption is that over burdened public systems are infinitely elastic and can simply stretch a bit more to accommodate one more legislated program.

    Those supporting passage of Pennsylvania’s AOT statute would be well served to look to neighboring New Jersey. AOT legislation passed both houses nary a dissenting vote but there was no funding. The underlying community system already stretched by an ever increasing service population and a history of declining inflation adjusted funding couldn’t stretch anymore and IOC was never implemented.

    2007 PA Clients Served in Community Settings: 401,894
    2005 PA Clients Served in Community Settings: 295,816
    Increase: 36%

    2007 PA Funding for Community Mental Health Services : $2.7 billion
    2005 PA Funding for Community Mental Health Services $2.0 billion (in 2007 dollars $2.13 billion)
    Increase net of cumulative inflation: 26.7%

    Source: SAMHSA Uniform Reporting System (URS) Output Tables, http://www.samhsa.gov/dataoutcomes/urs/

  • Jeanette G. says:

    My brother is severely ill with schizophrenia and he also suffers from anosognosia. He does meet every requirement to benefit from the new AOT legislation if it is passed. He desperately needs this kind of help. Court ordered treatment is the only way that he will receive consistent, professional, analysis and care for his illness. He has been 302′d and 303′d and is then released early with no follow-up. His deteriotation after a 302 or 303 is rapid and devastating to watch. As a family member I cannot force him to take advanatage of help available on a voluntary basis which is now required. With a court order, he would have available to him the newer medications and therapy that may bring him to a less isolated life. He does not have the capacity to understand that he needs help. This lack of insight (anosognosia) has been the cause of his isolation. If he is never treated consistently through assisted outpatient treatment he will end up back in the hospital on a 302 or a 303 and the cycle will repeat over and over and over. I urge anyone reading this to see the seriousness of the need of my brother and others like him who live in a dark, isolated world with rejection and constant chaos in their lives. Anosognosia effects the same part of the brain as Alzheimer’s patients. We would not turn our backs on them and refuse them compassionate care. We need this legislation to give our loved ones a chance in a compassionate setting with professionals—the same way that we would treat anyone else with a prolonged and desperate illness.

  • Debbie Plotnick says:

    This story perpetuates the misconception that proposed legislation will offer relief to family members whose loved ones are experiencing a mental health crisis, and spreads false hope.
    It is heart-wrenching to hear parents like Mrs. Pinto, and other family members, encourage the passage of proposed legislation that, in all but the most extreme instances of people with a long history of repeated crises, would not apply to their loved ones. Mrs. Pinto’s son (and the loved ones of the vast majority of families sharing similar stories) would only definitively meet two (possibly three) out of the seven criteria under this proposal, ALL of which must be present for so-called outpatient commitment to be invoked. The individual must:

    –Be 18 or older;
    –Have a mental illness;
    –Be unlikely to survive in the community without supervision (based on a clinical examination);
    –Have a history of non-compliance, which includes 2 or more hospitalizations within the previous 36 months, or 1 or more acts of violence against self or others;
    –Be unlikely to participate in voluntary treatment based on “the treatment plan”;
    –Have a history such that, based on that and the individual’s behavior, it requires court-ordered assisted outpatient treatment to prevent a relapse or deterioration that will likely result in a person becoming a clear and present danger to self or others;
    –Be likely to benefit from assisted outpatient treatment .

    As a family member myself, I understand how desperately people want to believe that a legislative remedy that affects a very small number of people is a cure for a system that has failed their loved ones. We all need to work together to create options that people want and that will truly help.

  • Greta says:

    The family and the person with mental illness are suffering. 302 has no meaning if they keep the patient for only for 3 days. 302s have to be done by family members and it can be very traumatic experience. The person has no insight and if depressed can harm themselves or others. I can’t believe USA has such laws that they let the mentally ill person roam on the streets and nothing can be done. Most of them are homeless OR are in prison.

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