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I have 'spearheaded' the movement for a safe and lasting recovery for my son. I have learned specialized techniques to address behavior from an unstabilized individual who suffers from a severe brain disorder in order to keep him home until more in-depth treatment could be found. I obtained information from organizations as well as informed myself through reading books and newsletters. It takes work, but it can be done. It also takes a team effort from our family and the right professionals. And everytime I see my son smile, give love to his dog and other family members, or just jokes around, I am rewarded daily! We have our son back.

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Monday, August 5, 2013

"Caregivers for mentally ill (severe brain disorders) push for support"

I found this post merited a place on my blog because it touches on the needs of a family trying to provide the needed care for a loved one who suffers from a severe brain disorder. It is an overwhelming task with no breaks and little appropriate support. We suffer from trauma and battle fatigue after year upon year of struggle, worry, and financial distress. We need help to help care for our loved ones who suffer from a severe medical condition. Other brain disorders are provided support. Why not our families? "Caregivers for mentally ill push for support Government should finance health care workers to come into the home, Sudbury advocate says CBC News Posted: Aug 1, 2013 9:41 AM ET Last Updated: Aug 1, 2013 11:36 AM ET A Sudbury woman caring for a son with schizophrenia says new guidelines to support care-givers of the mentally ill may help. Some of the guidelines recently proposed by the Mental Health Commission of Canada suggest changes to privacy laws to allow caregivers more access to confidential records. Sudbury's Margaret Jones - whose son was diagnosed with schizophrenia as a young adult - said getting access to his treatment information wasn't an issue for her. But there was practically no other support for her almost 30 years ago. "I was taking sleeping pills because I couldn't sleep," she said. "I was thin, I wasn't eating. It was really hard for me to concentrate on anything other than keeping him out of trouble and keeping him safe." Jones said there are more community programs now, but said the government should finance health care workers to come into the home. Pushing for change. Meanwhile, the CEO of the Sudbury/Manitoulin chapter of the Canadian Mental Health Association said the new guidelines are a beginning. Marion Quigley said care-givers can be more involved in the welfare of a mentally ill person by removing confidentiality. "The legislation protects the individual's right to privacy and so this report talks about some of those changes that people are asking for," she said. If the changes to privacy laws to allow caregivers more access to confidential records comes to fruition, Quigley said that would enable them to know how to best care for their relative. She added the CMHA will be part of a campaign in the coming weeks to push for change. "I'm not very optimistic, I think that legislative change takes a long time, however, I am optimistic that we can work together and set up strategies in the meantime." The CMHA will work on providing caregivers with more support in the meantime, Quigley noted."

Give Them Something to Hold On To!

This was an article I wrote for Step-Up-On-Second's Summer 2008 newsletter about our journey to be able to give James motivation (something to hold on to) in order for him to stay compliant to treatment.

It explains a little about what we did as a family to facilitate his changing needs while staying safe.

I will be happy to share it on request.

I have also written and had publish a couple of letters to the editor for different newspapers in support of Laura's Law here in California.

Laura's Law is an assisted treatment law that would enable those who suffer from a severe mental illness to get Treatment BEFORE Tragedy!

BEFORE jail, homelessness, or violence!

Please write to your local representatives, your senators, your Board of Directors and the Governor of California. Tell them you want to see Laura's Law fully implemented in the state!

If you live in another state and want your state to have Assisted Outpatient Treatment laws like Laura's Law, click on the link below for the Treatment Advocacy Center and find out who you need to contact.

Early treatment is what gives us hope for a recovery.


HERE ARE THE TWO FIST STEPS WE DID

The first, was as early an intervention as possible.

The second, was putting together the right treatment team for my son.

INTERVENTION

Daniel's Place
www.stepuponsecond.org/services/help.html
1619 Santa Monica Blvd.
Santa Monica, CA. 90404
(310) 392-5855
First stop to getting important information at the beginning of the onset of a severe mental illness. They also serve those with autism.

Lost Hills Sheriff's Department who would send out officers when we needed back-up and to the At Risk program that tried to help our son.

Barry J. Nidoff Juvenile Hall
Sylmar, CA 91342

Some of these people have moved on to other locations but we are very grateful they were here when we needed them the most.

1) His Honor Commissioner Gold who understood what we were facing with James and did all in his power to support us in being successful with his prognosis. He ordered that compliance to treatment be part of James' probation because AB1421, Laura's Law, was not available to us.

2) Public Defender Evan A. Kitahara was what we needed to get James treatment. I would recommend this man to anyone. He is one who spear headed all the conections with the Public Mental Health Attorney for James while he was in Juvenille Hall. Mr. Kitahara understood our situation and he was a big part in our success.

3) Public Mental Health Attorney Lisa Greer. She was responsible for getting James what we needed from the Juvenile Hall school that would qualify him for Emotionally Disturbed status that would allow us to pursue placement through our school system and the Department of Mental Health in an out-of-state lock down facility. She also had James sign over his educational rights to me which was critical in the last years when he wanted to stop the program he was in out-of-state. It also gave me power in the Individual Education Plan meetings (IEP) once James was of legal age. She spent all day in one meeting with us to insure we had the right verbage so that James would have what he needed in our school district. She did so while missing an important meeting for her own special needs child. A great woman.

4) Jerrald. F. Pedrotti - great help in connecting with Even, Lisa, and James when he was in Juvenile Hall. A great advocate for treatment and a great mentor to those lucky enough to get his attention and help.

5) The various probation officers that would listen to our family needs and support treatment.

Child Advocate (name forthcoming) to help us navigate through some tough meetings with the school district to get a lock-down facility approved by the district to meet James' needs at that time.

Las Virgenes School District

Mental Health Attorney (name forthcoming) to get probate conservatorship so we control James' SSI monies until the time when he is ready to take control of his finances.

Devereux Residental Treatment Facility
http://www.devereux.org/
League City, Texas

TREATMENT TEAM

Tracy Rosberg, Ph.D. psychologist
23401 Park Sorrento, Suite 200B
(818) 591-3000
Either Tracy or a member of her team can help with a wide range of disorders including Autism. Tracy helped us with my son getting on a Clozapin trail and she recomended UCLA. She also personalizes her therapy session to fit the needs of the person. She would take walks with my son because he couldn't sit in a room for a long peroid of time.


Dr. Steve Marder at the UCLA Schizophrenia Clinic

Outpatient Schizophrenia Program
http://www.psychiatry.ucla.edu/
Information and referral - (310) 825-9989
or (800) 825-9989
(310) -268-3647 to schedule an appointment.

Sophie at ICPS - (951) 354-6804
ICPS (Independent Consultant Pharmacist Services) - monitors blood test for white blood cell count and more. A great help to both the doctors and the families who have a member on a Clozapine trail.

Ride-On:
http://www.rideon.org/
e-mail: info@rideon..org
10860 Topanga Canyon Blvd.
Chatsworth, CA. 91311
(818) 700-2971
Horse therapy with psychoanalyst. This was a great help to James regaining some of his self-confidence and much more.
They service all types of mental and physical disorders.

Victory Wellness Center- Day Program and much more
14411 Vanowen St.
Van Nuys, CA. 91405
(818) 989-7475

ABA (Applied Behavior Analyisis) - Behavior modification techniques that allowed us to develop personalized programs to keep James compliant to treatment, extinguish unwanted behavior (even when he wasn't yet stable with the right treatment), increase wanted behavior, self-esteem, and over time trust. I learned the basics from an Autism Patnership trainer with on the job training in a Community Based Instuction High School setting but there are many who offer this program. It is designed for those with autism but I found that once I deveolped a plan around the needs of my son, it was still the most effective behavior modification program for when he was not able to reason out problems. Behavior is behavior, in my humble opinion.

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