Year-End Reflections from our

Executive Director, Karen Fessel, Dr PH

As once again, we approach the end of year, I am struck by how much has happened in the 15 plus years that we have been in existence. We started out as a group of parents who were trying to get services covered through insurance for our children with autism. We primarily worked on a volunteer basis with California families in similar situations. We spent a lot of time in those early years educating state legislators and regulators on the needs of our special kiddos about what we needed from our health plans. Along the way, we got legislation passed in CA to help those on the autism spectrum (SB 946), hooked up with Autism Speaks, and started advising those nationwide.

The challenges have shifted from not being able to get any treatment to how much care can be provided, where services can be delivered, and finding providers with availability. About seven years ago, we started working with families with loved ones with other mental health conditions to get things like residential and partial hospital treatments covered through insurance for those whose conditions required a higher level of intensity.

We were lucky to be able to work with the Kennedy Forum, and get meaningful legislation passed in CA for mental health parity (SB 855). We recently submitted guidance to the federal government on what is needed to make the Federal Mental Health Parity and Addiction Equity Act more of a reality to all who need it. We have expanded to a paid staff of five employees. Clients reach out to us from all fifty states, with autism and/or mental health conditions, in need of help and advice on how to get insurance to pay for much needed treatments. We speak at conferences and in the community, we actively respond to questions by phone and e-mail, and we offer in-depth services on a sliding scale to those with modest incomes. We cannot do all this work without your help. Thank you to those who have given in the past and to those who continue to give. Your contribution makes a huge difference. Please contribute here.

Happy holidays.

With Gratitude

One Family's Courageous Fight for Mental Health Care for Their Son

MHAIP received an urgent call from a mother with an increasingly dsyregulated child. Parents of a 15-year-old son diagnosed with Autism, ADHD, and Disruptive Mood Disregulation Disorder called us while fighting a battle with Kaiser to secure the care their son required. Parents noticed that their son's medication was no longer having the same effects as it had previously. They tried a medication change but he continued to decline and present concerning symptoms. After an initial hallucination, parents called 911 and he was transported to the ER. This was the first of 7 trips to the ER over several weeks. Kaiser claimed to be working to find a placement for him, but no programs would accept his case, and time dragged on

In the meantime, during these weeks of 7 trips to the ER, the family was caught in an existential cycle. The local Kaiser hospital did not have any behavioral health specific facilities in their ER - patients stayed for days in beds separated by curtains from other patients and were assigned a guard to "keep them safe." Due to this unsafe situation at the local Kaiser hospital, the ambulance would only transport patients on a 5150 hold to a non-Kaiser hospital with proper behavioral health ER facilities. Naturally, Kaiser would not authorize their son at this non-Kaiser hospital. On the 7th 5150 transport to that hospital, when Kaiser again told the hospital they would not cover the admission, the hospital threatened to call Child Protective Services (CPS) if the parents did not pick him up. His parents feared they could not keep him safe at home.

MHAIP helped the mother compose and send an e-mail to the Department of Managed Health Care (DMHC) helpline, alerting them to the urgent situation. But the family went further than that: after many conversations with the police, the mom had a creative solution. She called Child Protective Services herself, to report Kaiser for endangering their son by failing to authorize the hospital to admit him, and for releasing him before he was mentally stable. CPS advised parents to file a police report against Kaiser, but also arrived at their home to investigate. After 6 hours of answering CPS's questions, proving they were administering their son's medications and signing papers, parents were prepared to sign custody of their son to CPS with the hope that they would keep him safe from harm, since Kaiser had thus far failed to do so. It was however, a Friday evening, and CPS could only offer an office as a place to keep their son for the weekend. While parents debated this unwise solution with CPS, Kaiser called the CPS agent to say they would now agree to admit him to a Kaiser facility. Their son was transported to a Kaiser hospital, where he stayed for 7 days.

Parents filed an emergency grievance immediately with Kaiser and requested a Single Case Agreement (SCA) with ViewPoint Center in UT for stabilization and assessment. CPS then also reached out to the DMHC. Kaiser agreed to the SCA with ViewPoint for their son. Note that CPS closed the file and no action was taken. Parents then had to negotiate his transport to ViewPoint and eventually Kaiser agreed to cover an emergency medical flight. After 1 week at ViewPoint, his treatment team determined their son required a higher level of care for a longer time frame and recommended the CAT program at Huntsman in Utah. Parents have been working on Kaiser covering his care at Huntsman for a month and just learned that Kaiser has agreed.

Parents advise others to get the state regulator involved if you believe your insurer is endangering your loved one by not approving needed care. They also recommend to have evidence - police reports, photos of any injuries, etc. These parents have been incredibly brave and creative to get CPS, police and DMHC involved to pressure Kaiser to do what should have been done months ago.

This family's experience is precisely what the DMHC is trying to address in its recent landmark settlement agreement with Kaiser over its delivery of behavioral health care services. Kaiser has agreed to invest $150 million over 5 years to improve its delivery of behavioral health care, and to pay a $50 million fine. This family's story was unfolding at the same time as this settlement. Hopefully Kaiser will make the necessary changes as quickly as humanly possible.

Highlights From Recent Appeal Wins

$55k Denial for Emergency Mental Health Care Overturned Plus $8k Ambulance Charge Covered

A 16 year old male from Illinois who suffers from Major Depressive Disorder and Anxiety was denied coverage for emergency mental health treatment by the family’s HMO plan with BlueCross BlueShield of Illinois.  The adolescent was attending a therapeutic boarding school in another state and made a suicide attempt there.  He was admitted through the emergency department in that state to a short term residential program while next steps were arranged.  His parents attempted, in vain, to work through the BCBS IL system for placement for their son and eventually he admitted to Huntsman in Utah for stabilization and assessment.  BCBS IL denied coverage citing that out of state care is not covered.  However, an emergency admission out of state is a covered event by the HMO.  MHAIP filed an appeal, to which BCBS IL failed to respond.  MHAIP then simultaneously filed a grievance for failure to respond to an appeal with BCBS IL and a complaint with the Illinois Department of Insurance.  After involving the regulator, BCBS IL then called to say they were overturning the denial and issuing a check for $55k, the full amount billed.  Additionally, BCBS IL denied coverage of the $8k fee to transport the member from the emergency department to the short term residential program, even though the emergency department required his transport by ambulance.  MHAIP won that appeal, as well, and the ambulance fee has been covered.

Follow Ups on Recent Cases

Additional Win for Client: 72 Days of RTC

In our previous Newsletter, we reported on an overturn of an administrative denial resulting in coverage of 31 days of RTC. The client had switched from one United Health Care (UHC) plan to another, in the middle of the stay. The second part of the stay, under the new UHC plan, was denied on appeal. We then turned to the Texas Department of Insurance (TDI) and filed a complaint. MHAIP explained that UHC had overturned its administrative denial for the same member, same residential stay but upheld its denial for the member under the new policy. UHC then overturned their original administrative denial AND performed a retro-review for medical necessity. They ended up authorizing coverage, resulting in an additional 72 days of RTC. They paid the client an additional $37k.

Blue Shield Required to Cover Complete Stay, Sent to Enforcement for Erroneous Denial

In our last issue, we reported on a 71 day stay covered by Blue Shield of CA (BSOC) where they refused to pay the amount agreed to in the single case agreement for a teen male with ASD, depression and ODD. We took the case back to the DMHC (CA state regulator) (for the third time) and they required BSOC to pay at the rate specified in the single case agreement. DMHC also sent the case to enforcement for erroneously denying the second part of the stay. When cases go to enforcement, the regulator can require them to pay mandatory fines for failing to follow the law. 

Ongoing Fight for Neurodiverse Youth

Here is an update on a case we mentioned in our last Newsletter. MHAIP originally won 6 ½ weeks of coverage at an out-of-network residential treatment center for a 12-year-old boy with autism and behavioral issues that made it impossible for him to live safely with his family.  When that period was exhausted and Anthem denied his continued stay as not medically necessary, MHAIP appealed to the California Department of Managed Healthcare (DMHC). The DMHC agreed that the 12-year-old boy with autism met RTC level of care guidelines and approved his stay at Intermountain Residential Treatment Center for an additional 8 ½ months. We are staying on this case as the boy's stay has always been a longer-term one and Anthem has continued to deny at each juncture.



Highlights of Pre-Authorization/UR Services

• 16-year-old from California with Depression and ADHD was granted the full stay at a residential treatment program in Hawaii...88 days!
• A young adult from California with Anxiety and ADHD was granted 80 days authorization at a residential treatment program in Hawaii.
• 79 days and ongoing have been authorized for a 16-year-old from Florida with Anxiety and Depression at a residential treatment program in New Hampshire.

Another New Member of the MHAIP Team!

Meet Sara Du Terroil

Appeals Specialist

Sara Du Terroil is a mother of three, healthcare advocate, and licensed insurance consultant. She has long followed MHAIP and is delighted to join Karen’s team in working to improve access and funding for necessary care.   

Sara began her advocacy career as a labor law attorney in the United Kingdom where her work included appeals and grievances, discrimination cases, employment policies and procedures, and conducting trainings to help employers resolve grievances before they became litigation. 

Informed by her journey as the mother of a young adult with autism and intellectual disability, Sara moved into patient advocacy to help individuals and families understand and assert their healthcare rights, especially for mental health parity.  Sara is passionate about finding creative solutions and breaking down barriers in access to behavioral health and crisis care.   

In advocating for her son’s complex medical, behavioral and educational needs, Sara has found great strength in the wider disability community.   Based in New York, Sara is also a seasoned legislative policy advocate around disability rights, including the advancement of care systems that work for, and protect, those with complex needs.  

In her free time Sara enjoys theater, tennis, yoga, and the great outdoors.   

Donate Now to our General Fund

The General Fund supplements our sliding scale program, pays for educational seminars and workshops for families and professionals, helps with policy work and allows us to provide free advice to families needing help with insurance.

Donate to the Feda Fund

We will need your continued financial support to be able to keep this wonderful program, which allows us to provide assistance to financially struggling families and keeps Feda and Mu’s memories alive in our hearts.  Thank you for your active support.