Support Groups for Families Dealing with Mental Illness

I have an older teen on Medi-Cal and have also heard for many years that there is no PHP or IOP through Medi-Cal.  Have you thought about going through Mental Health ACCESS to request Therapeutic Behavioral Services (TBS) instead?  They provide in-home intensive treatment for a few months to try to heal an entrenched problem.  In the past I have requested up to 28 hours per week and ended up being granted 22 hours.  I recommend that you request it ASAP because there can be a long delay before services kick in and I believe the provider actually takes 30 days to simply observe before creating a Treatment Plan.

Here are the phone numbers for Mental Health ACCESS:

Alameda County:  1-800-491-9099

Contra Costa County:  1-888-678-7277

San Francisco:  (415) 255-3737

Following up regarding conservatorship -- this is very difficult to obtain in California.  It is also a double-edged sword because if you have a young adult who is out and about in the community, perhaps not making good choices, then you will still be financially liable for any bad choices that they make if they are under conservatorship.  Some examples are:  stealing and damaging a car, driving while intoxicated, breaking into a building, vandalism, etc.  Your finances could be imperiled depending if your young adult is choosing a risky lifestyle.  It may  make sense for some families, but only if the young adult buys into a safe lifestyle.

Dear Penelope:

  I am sorry to hear about your daughter's challenge.

 I have an adult son, who was diagnosed with a low-level of bipolar, at the age of 17--. Up until he reached 30, all was managed, without medication --he chose to bicycle and jog, stayed away from sugar and alcohol, stopped cigarettes, but then came the pandemic & once he started drinking again, but most importantly, vaping, his bipolar ups/downs became HIGH level--Today, that's where we are.  Husband & I turned to NAMI (National Alliance on Mental Illness)  .  Are you connected with the East Bay chapter of NAMI??  Classes are offered to friends/ family members--free of charge. Apart from the 'family to family' classes there are regular monthly meetings for family, friends and separate gatherings for the 'client'--yes, including children (sorry, I'm unsure how old the child must be).  Please reach out to them (located on Stannage in Albany). My experience is there  is a wealth of experience and know-how for getting help for yourself and for your loved one.  https://namieastbay.org/what-we-offer 

   All the best!

I am so sorry to hear the pain your child and family is in. I wish you all the best in navigating these issues. I recently researched therapists for my daughter and found this organization: Bay Area Clinical Associates (https://www.baca.org/). They mention on their website that they are working toward being able to accept Medi-Cal. You could contact them to see how far along in the process they are.

So sorry to hear about your daughter's challenges. My daughter has a complex set of mental health struggles and diagnoses, she has been hospitalized numerous times. Your daughter's school district should be a funding source. She will need an IEP for Emotional Disturbance. If you are interested in considering a residential program, the school district should cover the entire amount which will be around 13K-15K per month and will be a 10-18 month stay. The school district receives federal money for this.  Even if you decide not to go the residential route, it might be helpful to do some research and talk to a couple of programs to get an idea of what they provide and how it works. There are a lot of programs in Utah. A great resource for information is DREDF (Disability Rights Education and Defense Fund), they have an office in Berkeley and do most communication by phone. You will need a lawyer to set up a conservatorship, most lawyers will do an initial 20-30 minute phone call with you for free. Good Luck.

I’m sorry to hear your daughter is struggling so much, I too have a teen daughter who is dealing with a serious mental illness and know acutely how hard it is to find appropriate help!  
I don’t have any answers to your specific question but have 3 things to suggest that might be helpful.

NAMI is a wonderful organization that offers support groups (currently weekly on zoom) and members may have recommendations. 

Willows in the Wind is another support group for parents with kids who have mental health issues and addiction I think?

There is a place with looking into called The Felton Institute. It’s only for early psychosis but offers ongoing support in a wraparound way. 
 

I encourage you to get as much help as you can before she turns 18 and can refuse treatment.

in case she is resistant, you may benefit from the book I’m Not Sick, I don’t Need Help by Xavier Amador. Look up his Ted talk about anosognosia. 
 

lastly there is a group called FASMI who is working to push for better services and support for seriously mentally ill. There are many parents in this group who would understand though many have adult children.

best of luck, I’m in it too and it’s awful, And COVID has made it monstrously worse. Wishing your family all the best!

Hi, my daughter started having severe mental health problems around the same age. We don’t have medi-cal so I have no experience with that but might be able to help navigate. I have dealt with 4 hospitals, numerous therapists and inpatient and my insurance company. My daughter has been inpatient, IOP and PHP. Please feel free to email me (ask the moderator for my info). I’m happy to help. I found it was vital to have support as well. My daughter is now 19. 

I am so sorry you are going through this and have run up against all of these financial barriers in mental health access. As a family physician myself, I know that partial programs are a rare resource, so this is not an easy world to navigate. Your Medi-Cal managed care plan should have a patient navigation service, and some counties also have a patient navigation service usually embedded in their county’s healthcare delivery system (ex. Alameda Health Services in Oakland). Within these systems you often find more robust support for mentl health, especially medical social workers experienced with Medi-Cal, because these systems care for most of the patients with severe mood and other paych disorders. Berkeley doesn’t have such a system, but I would imagine Lifelong FQHC system as similar support. Those most experienced at navigating this system are often academic child and adolescent psychiatry residency programs, where their attending physicians, residents and fellows are actively working in the outpatient, partial and inpatient settings. Thus, they know the criteria for admission, what is required to get the admission coveredc and the likely benefit for treatment at the various facilities. They may be able to arrange for a “direct admit” to a given program, where they place the admission orders from the clinic until the care of the child is assumed by the physician who is actually on service at the partial program or hospital.

Hi, I'm sorry your family has been going through all of this. My daughter went through a local PHP virtually (Rogers) during COVID and it didn't really help. Hopefully they are starting to meet in person. You didn't mention the specialty area that your daughter needs help with so it's hare to see if the program we tried would help. I called SO many programs, so I understand your frustration.

On another note - again, without knowing anything about your child, we have found a diagnoses called PANS and PANDAS which causes psychiatric illnesses and since you've tried so many things already and they haven't worked, I'm wondering if these diagnoses may be something you can look into as they have a different treatment.

All the best.

I sent your post to child psychiiatrist friends of mine, and I hope their responses might be helpful: 

“This person needs to speak to the child’s psychiatrist. The referral to higher level of care would come from them. Most partials take Medicaid.”
“Agree, talk with the kid’s psychiatrist, assuming she has one, as something underlying the relapse is not getting treated.  If she does not have one, now would be the time to get one or get a second opinion.  The parent may want to check through their insurance or the Psychology Today Therapist finder. This tool has  separate search capabilities for physician psychiatrists- I would not revommend a psych NPs for this patient. It can filter by location, insurance accepted, etc. Parent may also want to connect to the local chapter for NAMI for helping navigating resources in the area.  Agree with COVID not helping any of this.  Has made it much harder.”

Hey Penelope,

I am so sorry to hear you’re having such a difficult time. I am not a parent with experience in this area but I do know of this organization that may be able to be of help. They work with families who are having difficulty accessing appropriate mental health services for children.

https://www.mhautism.org/

I am not sure if they will be helpful in your specific case but just figured I’d share the resource.

Take care!

Thank you so much to all who have taken the time to respond.  I feel better knowing there are individuals out there who have been through similar situations and who want to help.  I have to say my daughter has full support team.  She has had counseling at UCSF, UCSF Benioff, Pathways Girls Inc, TBS.  We currently have a county case worker,  she has an IEP with a 1:1 aide and a psychiatrist and therapist who are really awesome.  The problem is, my daughter finds it so hard to communicate.   I really feel her anxiety has gotten to a level that is unbearable for her.  She is showing signs of OCD and already has a diagnosis of " unspecified psychotic disorder" and anxiety disorder.   She continues to state that she has made a mistake and needs to know how to fix it.  This has gone on for 30 plus days.   

On another note, I have gotten some more clarity on the insurance.  First,  we had a private plan with Kaiser before 2017 that made things a lot easier in terms of referral.  NOW,  We have Alameda Alliance, however, since we have been Kaiser Patients for so long,  they allowed us to continue with them as the primary provider.  Unfortunately, Kaiser only treats mild to moderate cases of psychosis so then we were referred to CHO.  However, at this point when I am trying to get her to Next Level of care, Kaiser is pointing the finger at Alameda Alliance,  Alameda Alliance has stated Beacon is in control.  After contacting Beacon, we were told to contact Kaiser again.  I asked our Pediatrician for a referral to an PHP or IOP an she went to the "chief of psychiatry" at Kaiser and he referred her back to Alameda Alliance.  At this point I don't know who covers what.  I am caught up in red tape and my daughter is paying the price.   I have registered with Nami and hope to find some help.  I have been to several meetings with them in the past, however I felt like no one could understand my situation because everyone suggested that a 9 year old could not become psychotic or schizophrenic.   The illness stared at age 9 with paranoia and delusions and has progressed from there.  She also got her first period about the same time.   Will keep trying....  I plan to file a grievance with Kaiser.  Any help would be appreciated

Any help would be appreciated.   

Penelope

My heart goes out to you--so painful and difficult.  I asked a friend who has many years of child development/psychiatry practice in Sonoma. 

She said  "If this were Sonoma County, I’d call the Sonoma County Mental Health Access Team. They provide services for kids on Medi-Cal (psychiatrist, case manager, wrap around services, some kids have gotten home visits and therapy).

She needs to access all the outpatient services that can be offered….that might help and if not, if she can’t be served in a public school, sometimes the school will split the cost

You kind of have to fail full outpatient services first before partial day or residential.  This woman needs an advocate!

(Since it sounds like she hasn’t accessed that.)

Hi Penelope -

This sounds so hard. If you need help with the complaint process or figuring out who should cover what, I would suggest contacting the Health Consumer Center at Bay Area Legal Aid: https://baylegal.org/what-we-do/health-care/health-care-access/. Phone # is 1-855-693-7285. 

Hi Penelope, I feel for your daughter! It sounds like she is struggling with a lot of different symptoms. I am a mental health professional working in Contra Costa County at a psychosis specialty program that also treats kids with at-risk symptoms including hallucinations and paranoia. It offers intensive services in line with Coordinated Specialty Care (CSC). I wonder if Alameda has a similar specialty psychosis program through the county. I know Kaiser has similar programs but not as fully fleshed out as our program. In terms of her current symptoms, that does sound like OCD, though her psychiatrist I’m sure would weigh in on that. If it is OCD, Rogers does have IOP and PHP programs focused specifically on OCD, but I believe they only take private insurance. Not sure if Kaiser has a contract with them or not. In general, my understanding is that you would have to switch to a private commercial health insurance to be covered for most IOP or PHP programs. At least in Contra Costa County, Medi-Cal doesn’t cover these kinds of programs and instead the county programs utilize wraparound, TBS, and other intensive outpatient services. Hope this is helpful…

Hi Penelope, I’m sorry you’re having to deal with this. I am too. My daughter is almost 17 and is engaging in some drugs and a fair amount of nonsuicidal self harm. A lot of stuff I really don’t understand. This is especially frustrating when it’s so hard to get in touch with experts to consult. I have spent the last three weeks calling, inquiring and filling in Web forms. I have created a spreadsheet of the resources that I have contacted so far. And more that I have not contacted yet. It is by no means comprehensive, but I would be happy to share it with you. Please ask the  moderator to give you my email and I can send it to you in an attachment. 
For the sake of my daughters privacy I have asked BPN to hide my user name. But I hope this doesn’t prevent them from sharing my contact info with you