We found out today that the State of California has scheduled a meeting with our county's Mental Health supervisors to discuss my granddaughters care. It sounds rather hush-hush, only State people and the supervisors are attending. We haven't been invited, but we hope to learn more about it soon. In fact, if need be, we will insist upon it.
From what we were told, they will be discussing what hasn't been done, what needs to be done, and the resources available to her. What I would like to know is..... Why did it take so long??? Is this an isolated incident of neglect and oversight? Are there other families in our county, our state, our nation, going through the same thing we have been going through for almost an entire year? Why is it that her own crisis team, funded and provided by the county have never heard of the State recommended CMHP (County Mental Health Plan)?
There is a serious problem with all of this. I utterly hate that my granddaughter's case is what it took for people to take notice, because I would give anything to spare her the daily struggle she deals with. But I am grateful that something is being done. Hopefully it is being done before it is too late. But here's the thing, we won't know if it is too late will we. Everyday that she doesn't kill herself is a battle won. But damnit - this is a situation of life or death for a child! How could she have been failed for so long by those appointed to ensure her care? We trusted these professionals, who have the training and education that we do not. Why tried to see to every recommendation that they made, only to hit roadblock after roadblock. It finally took me writing a letter to the President of the United States for people to take notice. And now we are finding out that the resources have been in place to help children like her since 1965? What would have happened to her had that letter not been written? What still might happen, after this year of worsening mental health issues possibly due to this medical oversight and neglect?
How many other families are living in fear of their children taking their lives because of not being able to locate the resources available? Something more needs to be done, and apparently not just to educate parents but the professionals in charge of their child's care as well.
***More to come on the meeting, when we discover more. I am angry and I am determined to see that these questions are eventually answered. And I will be sharing them with all of you***
Tuesday, December 29, 2015
Wednesday, December 23, 2015
What the State of California Said..
Well, my daughter received a call (several actually) for the State of California and this is what we now know.
Our county mental health services really dropped the ball with my granddaughter. In fact, they failed her miserably. She should have already been referred to a CMHP, County Mental Health Plan, which is specialized care. She should have been removed from Central California Alliance and switched to Medi-Cal (Medicaid for California). Central California Alliance is more of an HMO that has treatment restrictions and fewer care options and is for mild to moderate care. Medi-Cal is a state insurance that allows her more treatment and facility options, and is for moderate to severe cases (such as for my granddaughter's situation). She should have been switched from her current mental health care to specialized mental health care.
The State offices are looking into why none of the above was already done. They are contacting our county to find out why the proper procedures were not followed and to make sure that they correct this "oversight". The person who spoke to my daughter said that these specialized resources, specifically for children, have been in effect since 1965! That there are a "ton of resources for children" but nobody knows about them.
So, now my questions are these:
***Coming up - the journey continues, branching off into new directions and goals***
****Please check the entry on how you can help. It costs nothing but a few seconds of your time and a couple of "clicks"****
Our county mental health services really dropped the ball with my granddaughter. In fact, they failed her miserably. She should have already been referred to a CMHP, County Mental Health Plan, which is specialized care. She should have been removed from Central California Alliance and switched to Medi-Cal (Medicaid for California). Central California Alliance is more of an HMO that has treatment restrictions and fewer care options and is for mild to moderate care. Medi-Cal is a state insurance that allows her more treatment and facility options, and is for moderate to severe cases (such as for my granddaughter's situation). She should have been switched from her current mental health care to specialized mental health care.
The State offices are looking into why none of the above was already done. They are contacting our county to find out why the proper procedures were not followed and to make sure that they correct this "oversight". The person who spoke to my daughter said that these specialized resources, specifically for children, have been in effect since 1965! That there are a "ton of resources for children" but nobody knows about them.
So, now my questions are these:
- Why has my granddaughter suffered for almost an entire year if there were resources available for fifty years?
- Why has my daughter watched this steady decline of her child's mental health, living in fear of the day her child might take her own life, and feeling helpless to stop that from happening, if there has been resources for her to turn to for help?
- What would have eventually have happened, had I not written a letter and lashed out to our President?
- Why are the resources available so hard to find?
***Coming up - the journey continues, branching off into new directions and goals***
****Please check the entry on how you can help. It costs nothing but a few seconds of your time and a couple of "clicks"****
Monday, December 21, 2015
Join The Fight - How You Can Help
We have a Facebook group you can join - https://www.facebook.com/HelpingParentsHelpTheirChildren
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Click on the links below the posts - Google keeps track of those clicks, every single one helps us.
Leave comments - We want to know that we are connecting with people.
Send us those resources!! - It doesn't matter where you live, if you have any resource information, I can almost guarantee that someone else is looking for it too.
Keep checking in from time to time - If you follow our blog and/or our Facebook Group, you can get updates automatically. But you can also just save the page info and check in on your own.
Send in Suggestions - We would love to hear from you. Let us know what we are doing right, what you are looking for, how we can do things better.
Share Blog Posts - The more shares the more likely this blog will be promoted and/or highlighted
Click on the links below the posts - Google keeps track of those clicks, every single one helps us.
Leave comments - We want to know that we are connecting with people.
Send us those resources!! - It doesn't matter where you live, if you have any resource information, I can almost guarantee that someone else is looking for it too.
Send in Suggestions - We would love to hear from you. Let us know what we are doing right, what you are looking for, how we can do things better.
People Who Matter Are Paying Attention!
So, this is really happening! My daughter is receiving the help and support of State agencies. And from the sounds of it, people are not liking what she has been told about her options. They are looking into it to verify whether options such as having to give up parental rights is accurate, and if so - just what is going on. If she has been given inaccurate information then they want to ensure that she be properly informed.
Who to direct her to for further help and accurate information? Why the person in charge of Mental Health Services in the State of California, of course! That person is being directed to contact my daughter and there will be follow up in a couple of days, to make sure that this has been done.
Now, where do we go from here, to get the word out and to ensure that ALL parents have the resources needed to help their children? How about the media? That is our next venture. Will it meet with the same amount of success? Don't know, but we will never find out until we try.
Until then, I am still working on gathering those much needed resources. I cannot stress enough just how much I need your help. Please, if you have any resource information, for any state - send it to me so that I can add it to our list. Our goal is to make sure that resources are easily located, so that parents don't have to fight and struggle to find the help they need to help their children.
***Coming soon - what the State of California says.***
Who to direct her to for further help and accurate information? Why the person in charge of Mental Health Services in the State of California, of course! That person is being directed to contact my daughter and there will be follow up in a couple of days, to make sure that this has been done.
Now, where do we go from here, to get the word out and to ensure that ALL parents have the resources needed to help their children? How about the media? That is our next venture. Will it meet with the same amount of success? Don't know, but we will never find out until we try.
Until then, I am still working on gathering those much needed resources. I cannot stress enough just how much I need your help. Please, if you have any resource information, for any state - send it to me so that I can add it to our list. Our goal is to make sure that resources are easily located, so that parents don't have to fight and struggle to find the help they need to help their children.
***Coming soon - what the State of California says.***
Sunday, December 20, 2015
Resource Numbers and Links
State of California Division of Medicaid and Children's Health
4l5-744-3568
Regular business hours are 9-5, Monday through Friday
Contact the White House (it can make a difference)
I suggest be passionate, but keep your email as civil as you can. Articulate clearly what your issue is.
https://www.whitehouse.gov/contact
NAMI (National Alliance on Mental Illness)
https://www.nami.org/#
For Teens and Young Adults
http://ok2talk.org/
***Note - I'll add more as I get them. If you have any resource numbers or links, please let me know so that I can add them here. Together we can help, together we can make a difference***
4l5-744-3568
Regular business hours are 9-5, Monday through Friday
Contact the White House (it can make a difference)
I suggest be passionate, but keep your email as civil as you can. Articulate clearly what your issue is.
https://www.whitehouse.gov/contact
NAMI (National Alliance on Mental Illness)
https://www.nami.org/#
For Teens and Young Adults
http://ok2talk.org/
***Note - I'll add more as I get them. If you have any resource numbers or links, please let me know so that I can add them here. Together we can help, together we can make a difference***
Resources - We Have Them, But Do We Know Where They Are?
Think of this scenario - You are told that your child needs specialized care, be it mental or physical. So you set out to get this care for your child, only to discover that your insurance doesn't cover it, you cannot afford this care, and/or that there is no such care available in your area of coverage. What do you do? How do you find the resources that exist to help you? You probably look online - only you find tons of links that are of no help to your specific situation. Who do you turn to, where do you go? You don't know so you become frustrated, feel helpless to help your own child, and you watch your child suffer - one of the greatest pains a parent can face.
What I am discovering is that there are resources available. But what I want to know is, why are they so hard to find? And if you think that the above scenario isn't something you need to worry about, ask yourself these two questions - What are the resources available to you to find the help for your child, if you needed them? Where would you find those resources on your own, as you most likely would have to do?
Each situation is different, but there is one commonality - parents feeling helpless to help their own child. And this isn't limited to low-income families, there are families with good insurance who have had to fight to get recommended care for their children. NO parent should ever feel helpless in providing the care that is recommended for their child. When a parent is struggling with an issue their child is suffering from that requires specialized care, the last thing he or she should be having to deal with is a mountain of red-tape, hidden resources, and feeling like they have the least amount of say in the matter. It just isn't right that a parent should be made to feel so helpless.
So, what do we do? We get the word out. We save links to all available resources. We stay proactive. We fight for ourselves, so that we can fight for our children! If you know anyone who has fought and struggled, but obtained those precious nuggets of information - get those resource links! Share them.
It took me writing to the White House to get a reaction. I intend to save every bit of information that I get. But I only will be having California resources given to me. Send me info on other states - I will share those with others. Believe me, I have online friends all over this country (and a couple in Canada as well), and they have friends, and so on - we can get the word out. But we have to start, we have to at least try.
I will compile a list of resources and put them all in one location. My ultimate goal is to have an easy to navigate online resource link for parents. Ideally, we could do this for each state, but that will take help and dedication from other parents, or those who are willing to strive to help all parents.
***Coming up - What the State of California says we can do, A resource list for California and federal links, What you should do now, before you need it, and more***
What I am discovering is that there are resources available. But what I want to know is, why are they so hard to find? And if you think that the above scenario isn't something you need to worry about, ask yourself these two questions - What are the resources available to you to find the help for your child, if you needed them? Where would you find those resources on your own, as you most likely would have to do?
Each situation is different, but there is one commonality - parents feeling helpless to help their own child. And this isn't limited to low-income families, there are families with good insurance who have had to fight to get recommended care for their children. NO parent should ever feel helpless in providing the care that is recommended for their child. When a parent is struggling with an issue their child is suffering from that requires specialized care, the last thing he or she should be having to deal with is a mountain of red-tape, hidden resources, and feeling like they have the least amount of say in the matter. It just isn't right that a parent should be made to feel so helpless.
So, what do we do? We get the word out. We save links to all available resources. We stay proactive. We fight for ourselves, so that we can fight for our children! If you know anyone who has fought and struggled, but obtained those precious nuggets of information - get those resource links! Share them.
It took me writing to the White House to get a reaction. I intend to save every bit of information that I get. But I only will be having California resources given to me. Send me info on other states - I will share those with others. Believe me, I have online friends all over this country (and a couple in Canada as well), and they have friends, and so on - we can get the word out. But we have to start, we have to at least try.
I will compile a list of resources and put them all in one location. My ultimate goal is to have an easy to navigate online resource link for parents. Ideally, we could do this for each state, but that will take help and dedication from other parents, or those who are willing to strive to help all parents.
***Coming up - What the State of California says we can do, A resource list for California and federal links, What you should do now, before you need it, and more***
The White House Responds To The Letter!
Okay, so the White House hasn't contacted any of us directly, but someone read that email and took action. First, I received a phone call from a White House Hotline. The lady I spoke with asked how I was doing with all of this and gave me a phone number for here in California. She wasn't able to help us directly, she was calling from an agency in Missouri of all places, but she seemed to really care, which was nice.
And then I received this email from the DEPUTY REGIONAL ADMINISTRATOR, Office of the Regional Administrator | Centers for Medicare and Medicaid Services
Hi, Ms. McRee. The White House forwarded your email of 12/11 to our office for response. I’ve attached the formal letter that will be mailed to you on Monday. However, because of the urgency of your granddaughter’s situation, I thought it prudent to get you the information as quickly as possible.
Enclosed was this letter attachment,
Dear Ms. McRee:
I'm writing to you about your December 11, 2015 email to President Obama regarding your daughter's and granddaughter's issues with a mental health diagnosis and attempts to get appropriate care under their insurance. The White House has taken note of your particular issue and has forwarded your letter to our agency and to this office for a response because you live in Califomia. Our office provides support and counsel to Medicare and Medicaid beneficiaries in your state.
First, I would like to say that I'm terribly sorry to read about your family's struggles; it's difficult to watch someone you love deal with illness and worry.
I showed this letter to the mental health experts in our Medicaid division and asked what they could tell me immediately. Here's what I learned.
While this complaint was about your granddaughter's insurance, CenCal, her Medi-cal Managed Care plan, individuals with moderate to severe mental health needs are served by mental health plans run by their county of residence. These plans are regulated as health plans and held to the same standards. CenCal does not cover psychiatric residential placements, that should be covered by her County Mental Health Plan (CMHP).
Your granddaughter should be a patient of her county's CMHP, based on her multiple hospitalizations. The CMHP should assess her for any medically necessary service. Including residential placement, and then provide her with a range of services based on medical necessity. While you asked about long-term residential placement, youth are generally assessed for short-term placements with a variety of intensive supports for community placement, including therapeutic behavioral services, intensive care coordination, intensive home-based services. targeted case management, as well as other mental health services available to patients of all ages. If, in fact, longer term residential services are necessary, the health plan CMHP should secure the placement, however the number of these facilities for youth has decreased with the increased availability of community supports.
Once we know your granddaughter's county of residence, my office can assist her mother in identifying mental health services, such as the CMHP, other community mental health centers, or advocates. At this juncture, and without having specific information about your granddaughter's case, our experts strongly recommend against relinquishing parental rights. This would leave your granddaughter a legal orphan and would eliminate your family's capacity to advocate for her. She should not have to be put into foster care in order to receive the services she requires.
Our office has already spoken to the State of Califonia to ask some preliminary questions; the state indicates that they would be very willing to help your family. I suggest that you have your daughter call our office as soon as possible, at 4l5-744-3568. This is the main line to our Division of Medicaid and children's Health. Please have her reference the letter you wrote to the President and my response, directing her to call. our regular business hours are 9-5, Monday through Friday.
Because of the urgency of this situation, I'm emailing you a copy of this letter today, and we will follow up with a hard copy on Monday.
I'd like to thank you very much for taking the time to reach out to President Obama about this issue and I hope that our office can help your family. I am happy that much-needed mental health services are available to patients like your granddaughter, who are on Medicaid. In addition, the Affordable Care Act extended federal parity protections to millions of Americans with small group and individual health plans. This means that all health plans and insurers are legally required to offer coverage for mental health and substance abuse issues that is compatible to coverage for general medical and surgical care.
Again, thank you for writing to us.
***This is only a beginning. One case is a start in the right direction, but does not change things for other families facing similar struggles. Coming up - Do you know of your resources?, Joining together to help all parents help their children, and many more steps until we have bridged this information gap***
And then I received this email from the DEPUTY REGIONAL ADMINISTRATOR, Office of the Regional Administrator | Centers for Medicare and Medicaid Services
Hi, Ms. McRee. The White House forwarded your email of 12/11 to our office for response. I’ve attached the formal letter that will be mailed to you on Monday. However, because of the urgency of your granddaughter’s situation, I thought it prudent to get you the information as quickly as possible.
Enclosed was this letter attachment,
Dear Ms. McRee:
I'm writing to you about your December 11, 2015 email to President Obama regarding your daughter's and granddaughter's issues with a mental health diagnosis and attempts to get appropriate care under their insurance. The White House has taken note of your particular issue and has forwarded your letter to our agency and to this office for a response because you live in Califomia. Our office provides support and counsel to Medicare and Medicaid beneficiaries in your state.
First, I would like to say that I'm terribly sorry to read about your family's struggles; it's difficult to watch someone you love deal with illness and worry.
I showed this letter to the mental health experts in our Medicaid division and asked what they could tell me immediately. Here's what I learned.
While this complaint was about your granddaughter's insurance, CenCal, her Medi-cal Managed Care plan, individuals with moderate to severe mental health needs are served by mental health plans run by their county of residence. These plans are regulated as health plans and held to the same standards. CenCal does not cover psychiatric residential placements, that should be covered by her County Mental Health Plan (CMHP).
Your granddaughter should be a patient of her county's CMHP, based on her multiple hospitalizations. The CMHP should assess her for any medically necessary service. Including residential placement, and then provide her with a range of services based on medical necessity. While you asked about long-term residential placement, youth are generally assessed for short-term placements with a variety of intensive supports for community placement, including therapeutic behavioral services, intensive care coordination, intensive home-based services. targeted case management, as well as other mental health services available to patients of all ages. If, in fact, longer term residential services are necessary, the health plan CMHP should secure the placement, however the number of these facilities for youth has decreased with the increased availability of community supports.
Once we know your granddaughter's county of residence, my office can assist her mother in identifying mental health services, such as the CMHP, other community mental health centers, or advocates. At this juncture, and without having specific information about your granddaughter's case, our experts strongly recommend against relinquishing parental rights. This would leave your granddaughter a legal orphan and would eliminate your family's capacity to advocate for her. She should not have to be put into foster care in order to receive the services she requires.
Our office has already spoken to the State of Califonia to ask some preliminary questions; the state indicates that they would be very willing to help your family. I suggest that you have your daughter call our office as soon as possible, at 4l5-744-3568. This is the main line to our Division of Medicaid and children's Health. Please have her reference the letter you wrote to the President and my response, directing her to call. our regular business hours are 9-5, Monday through Friday.
Because of the urgency of this situation, I'm emailing you a copy of this letter today, and we will follow up with a hard copy on Monday.
I'd like to thank you very much for taking the time to reach out to President Obama about this issue and I hope that our office can help your family. I am happy that much-needed mental health services are available to patients like your granddaughter, who are on Medicaid. In addition, the Affordable Care Act extended federal parity protections to millions of Americans with small group and individual health plans. This means that all health plans and insurers are legally required to offer coverage for mental health and substance abuse issues that is compatible to coverage for general medical and surgical care.
Again, thank you for writing to us.
***This is only a beginning. One case is a start in the right direction, but does not change things for other families facing similar struggles. Coming up - Do you know of your resources?, Joining together to help all parents help their children, and many more steps until we have bridged this information gap***
A Letter To The President
Dear Mr. President,
I doubt that you will see this and maybe it will only serve to help me vent, but I feel compelled to write anyways. You see, I have a 15 year old granddaughter who is a victim of your healthcare reform. A reform that did little to help those who need the most help. She has been diagnosed with bipolar disorder, with the likelihood of having Borderline Personality Disorder. Her only source of medical insurance is Central California Alliance (Medicaid for our area). Due to the changes that took place after the infamous "Obamacare", this means that her options for treatment are limited.
My granddaughter is currently at a psychiatric facility for suicidal ideation. This is her fifth hospital stay since January of this year. Every mental health professional who is familiar with her issues believes that she needs long-term residential care. However, we have run into a couple of major problems with that - finding a facility willing to take her type of insurance (an insurance that YOU claim will greatly benefit ALL citizens) and the measures her mother is being told must be taken to get my granddaughter this care that might save her life.
My daughter was told, by the hospital, that the only ways for her child to get the help she needs are the following - 1. She must be part of the juvenile court system, i.e. referred by juvenile hall. 2. my daughter must relinquish her parental rights, thus making my granddaughter a ward of the state and likely into foster care. 3 her school's IEP staff must refer her (which all but the guidance counselor refused to do because the school district would have to pay for the care).
Please help me to understand why it is so hard for a mother to help save her child's life with this "great" healthcare??? Please help me to understand why any parent has so little say in how to help her child, how a panel of school staff (who's job is to look after the best interests of the school district) have the power to block that parent from making sure her child is safe??? Please help me to understand why your great answer to our failing healthcare system is failing our children???
I am sick and I am disgusted with knowing that in a few weeks my grandchild will be coming home with another "band-aid" to treat her disorders. I live in fear of the day that my daughter will tell me that my grandchild has taken her own life, due to a mental health disorder that she can receive only minimal treatment for.
***Coming up in my next blog entries - More about our responses to this email (and someone in the White House has taken notice of it) and what we are doing about a situation that affects parents of all income brackets, regardless of insurances policies.***
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