Family and Caregiver Schizophrenia Discussion Forum

H.R. 2646 This is for all parents and Caregivers


#1

CONGRESS TO:
Say YES to
Expanding Treatment Options for those with Severe Mental Illness
Say YES to HR 2646
PLEASE CONTACT YOUR REPRESENTATIVE IN CONGRESS ASAP AND TELL HIM OR HER HOW IMPORTANT THIS LEGISLATION IS TO YOU AND YOUR LOVED ONES. FEEL FREE TO USE THIS SAMPLE LETTER AND THE ATTACHED LINK TO FIND YOUR REPRESENTATIVE.

Dear Congressman [insert last name]

My name is ________________________________ and I live in ______________________.

Please support HR 2646 because it addresses the obstacles families face when trying to save loved ones from untreated serious mental illness. This bill will expand access to treatment for individuals who miss out on mental health services because they are too ill to seek them. It will lead to treatment before tragedy.
We desperately need HR 2646 to help us appropriately care for our loved ones, who while in crisis, cannot care for themselves. It truly is a matter of life and death.

Thank you for your support!

To find your representative: http://www.house.gov/representatives/find/.


#2

Thanks for posting. Here is more info on this bill before US congress:

https://www.nami.org/Blogs/From-the-Executive-Director/June-2015/An-Opportunity-for-Comprehensive-Mental-Health-Ref

From the sponsor of the bill, Tim Murphy:

https://murphy.house.gov/uploads/Latest_Summary_The%20Helping%20Families%20in%20Mental%20Health%20Crisis%20Act.pdf

more info:

http://www.treatmentadvocacycenter.org/solution/hr-2646

https://www.psychiatry.org/psychiatrists/advocacy/federal-affairs/comprehensive-mental-health-reform

and some criticisms of the bill:

http://www.bazelon.org/News-Publications/H.R.-2646-Press-Release.aspx


#3

I am in a bad place right now with my own MI so please take this with a grain of salt: why would we take away people’s rights when once they get to the hospital they are not treated?

Background: my family member has sz and on the third or fourth psychotic episode was finally placed in hospital. Was not properly treated though we had temp. legal decision making and requested help from social worker, doctors, and state (court ordered treatment). Insurance company kicked them out of hospital after a few weeks and they came home deep in psychosis, though more calm in behavior.

Until there is real treatment, it’s meaningless to force people to go to local hospitals (state hospitals sometimes do provide treatment). The laws wait until people are a danger to themselves or others or gravely disabled; the only thing local hospitals do is acute care and suicide prevention with no actual treatment plan or follow up. I am 1,000% for getting people out of danger and one million percent for suicide prevention, but there is no ongoing treatment without court orders and ACT team so why force people somewhere that won’t help them unless they are in real danger??

I was so relieved when after years of severe suffering my family member finally got put into the hospital. Then was just dumped by insurance and lack of beds after a few weeks with no treatment and no follow up. It’s worse than a nightmare because it’s real life.


#4

@Hereandhere

I totally agree with you on this post. This is real and when you have a Szo adult child who refuse treatment or help. What do a parent do?! We are fighting with MI adult child, the hospital and the insurance companies. I feel so helpless right now because my son is in the hospital, he is delusional but calm, but because he is refusing medicine they can’t force him. He knows how to hide his symptoms from the doctors. He has been hospitalized 3 times and It look like he will be sent home without being given his Meds. We are mentally tired. God bless us all.


#5

Yes, it’s too much to go through. I do not think of my family member as hiding symptoms so much as hating the hospital and wishing to be out, tailoring behavior to meet a goal. (Did I read that your son had an outburst and was forced to take meds?)

My family member is vehemently opposed to seeing doctors or accessing any services and I had tried very hard for a long time. Having given up, mostly–I sometimes ask about accessing services and get screamed at-- our relationship is my priority and we get along most of the time.

I am not saying that treatment doesn’t help; I am saying that family members cannot force or control people to do things they don’t wish to do. This is not up to us. I hope everything goes well for everyone in your family.


#6

I’m not even sure thats true in most cases. There is research that suggests that it is helpful - but there is the bigger issue that has been brought up with which is the many other issues and barriers to treatment - in addition to the common issue of people not recognizing they are ill.

See below:

Patient Views on Involuntary Commitment…after the fact

Results

In the different countries, between 39 and 71% felt the admission was right after 1 month, and between 46 and 86% after 3 months. Females, those living alone and those with a diagnosis of schizophrenia had more negative views. Adjusting for confounding factors, differences between countries were significant.

Source:


#7

@Hereandhere

I didn’t really go into details when I said he had an outburst. He was committed against his will because we felt he was a danger to himself and he threatened me. My family is very supportive. My husband and I would never force treatment on him, if we didn’t think he needed it. He has been refusing treatment up until yesterday and then on yesterday he told the doctor he wish he was dead, so they gave him an injection because he has been non compliance since JANUARY. And has been in the hospital 3 times for non compliance.

When I said he was hiding his delusions, I have read that people with Szo will hide their symthoms from the doctor and I knew our son was hiding his symptoms until yesterday. My family is very new to this and I would never force medication on him!!!

And Thanks @SzAdmin


#8

Only courts with the help of doctors and hospitals can force treatment.

I am talking about involuntary commitment with treatment; a family can request it, but they cannot carry it out.

No family member can physically force an adult to take medication or drag them to treatment or services; that is up to an entity with the legal and physical power to do so. So, I am leaving that up to the courts. If my family member is involuntarily hospitalized again, I will of course request ongoing treatment and ACT team treatment, just as I did before and was denied.

My family member does not believe in sz or any other MI, but that this world is a distortion of reality by Christianity, the government, and aliens. The hospital and insurance company just dumped my family member out with no treatment so I would only call the crisis team if I were truly attempting to prevent suicide or other harm.

It makes family members feel extremely helpless and guilty when we cannot connect our loved ones to effective treatment; please do not blame us for the fact that there is no mental health care system, just a bunch of patchy, hard to access, disconnected providers that treat less than 50% of people with SMI in the US. And, of those who receive treatment, only 2 - 4% receive the full and necessary range of evidence based treatments currently known to be effective.


#9

…plus every person is an individual who responds differently.

I am angry that there is woefully inadequate health care for this serious illness.


#10

I know from personal / family experience how frustrating this is. I share your anger and frustration with how the system works.


#11

Yes, We had a family session on Friday evening and that’s what my husband and I requested. We explain to them the outpatient services isn’t going to work. He has been hospitalized 3 times and in the discharged planning with the team. They will tell him to follow up with an out patient services. I will set it up, but he will not follow through. We have BCBS and will not cover the ACT team, so we will have to drop him from our insurance for him to get Medicaid. That’s don’t make any sense to us. In our city, Pathways Mental Health services is the only place that offer ACT services and they only accept Medicaid, but our insurance will pay only after he meets a $3000 deductible.

Does anyone have any advice with this?

@Hereandhere Did I hear you say they denied him for the ACT services. Why was he denied? How is your love one doing?


#12

Denied because there are a limited amount of resources. State ACT team would have required court order the state was not willing to pursue because family member had calmed down and had a place to stay. Insurance wouldn’t cover private ACT, case manager, or any suitable program. Keep your son on your insurance until Medicaid is in place? Try to get emergency medicaid? If you can afford the deductible in any way, just pay it because what if treatment works and your son begins to recover?

For the past week my family member has been doing well. The few weeks before that were rough. No job or school for a couple years, sleeps all day, other effects of sz. I count the good days as those we get along and family member is without noticeable distress. I understand that my family member is suffering even when it’s not apparent.

Don’t blame yourself if your family does not receive needed help. According to the social worker in our state, unless a person is a danger to others, it usually takes eight to ten years to access services, then eight to ten more years on top of that to set up the life in the way the person wishes. So, sixteen to twenty years… Play the long game.

OR the best way to go would be first episode treatment like RAISE or other first episode programs. Ask a social worker about treatment programs in your area for first episode psychosis (usually means within two or more years of onset). These are supposed to be really good; our state doesn’t have one. Look up these programs on the internet and contact one directly if it’s near you.


#13

@Hereandhere

Thank you for the info. I am glad your family member is doing well. Does you family member receive SSI? My son is 24 and hasn’t worked in 3 years. We take care of him. We buy him clothes, cigarettes and etc. I would love it if our son could work, but the stress of working trigger his symptoms. Working would be great for him because it would keep him busy. We have a daughter who’s in college between her and our son it’s kinda rough financially. My husband is the bread winner. I had to change my hours from full time to PRN because someone has to stay with my son. Our life has changed. Never in a million years, I would’ve thought this is how my son life would be… I know with treatment he can live a happy productive life. God be with us all


#14

Isn’t if funny (not really) that children w/schiz can be really sick but also have the ability to fool the doctors? My daughter was placed in the same institution 3 times before the staff realized she was fooling them. They always praise her for her insight into the disease and how intelligent she is (which is true). And she would promise the moon and be so believable. The second time she was being released, they praised her so much that I finally said “What about her issues with her ex-husband?” They hadn’t heard anything about that and started questioning her about it. She started showing her illness and got so mad at the psychiatrist, she threw a pen at him! The next time they kept her 38 days because they finally saw how well she could manipulate them! Upon release, she went back to her addictions on day one.

For those of us with no money, there are no treatments for our children. My daughter has been hospitalized over 30 times. She’s jumped off a balcony twice. First time she was totally psychotic and broke her back in 3 places. The second time she was mad because I was calling the police and she took a flying leap off the balcony and broke her pelvis in 3 places. In earlier years she tried to commit suicide 3 or more times. Now she knows if she doesn’t succeed, she’ll surely be in the hospital for a while. Every place that we could possibly afford will not take schizophrenia as a dual diagnosis.

I found the perfect place for her to go. It is a long term facility that costs $18,000 a month for the first 2 months and around $8000 later. Who can afford that? But I dream of her having a treatment like that.

From what I’ve read, most of us are in the same situation. I feel for you Hereandhere. My daughter is 28. When your son is out of control, call the police. That’s the only way I could get her help. You feel horrible, but that is what you have to do. My daughter did things like throwing her TV, cutting the doors in the house or burning herself. Not all the times were like that. Mostly I would take her to her outpatient facility. They would tell me not to, but I did it anyway. She would cause a scene and they would call the police. These are just short fixes, but that’s better than nothing.

Good luck to all you precious caregivers.


#15

I had to drop his insurance before he could be seen at 7 counties and it was very uncomfortable. It ended up being lousy services but I found doctors who do take Medicaid and am looking for a psychologist. Much harder. If I have to pay I will do so. I don’t understand why?