Troubled person on beach at sunset

Lexi Struggles to Receive Home Based Support or Clinical Support for her Mental Health

Lexi is a 17 year old who struggles to be successful in the home, school, and community, due to barriers presented by her complex diagnoses of Autism Spectrum Disorder, Level 1, Major Depressive Disorder, Generalized Anxiety Disorder, and Gender Dysphoria.

Lexi has private insurance, and she accesses Medicaid through an SED Waiver. Her waiver started in fall of 2019 after her first hospitalization. She lives in Jackson County, so her services are provided by Lifeways Community Mental Health.

In 2020, Lexi was treated at the emergency room or admitted to an inpatient unit 14 times, and she also spent 4 weeks in a partial hospitalization program.

In 2020, even through Lexi had wraparound services and home based therapy with a 24 hour crisis therapist, there was never a single time that the crisis therapist came to our home to deescalate or attempt to stabilize the crisis. I was told by the provider that they first try to stabilize over the phone, then over zoom, and only if that does not work would they come to the home for in-person stabilization.

Our child was deregulating, punching holes in walls, and taking off and running down the street. It’s not like we could chase after her arm outstretched with a zoom call running on our cell phone. We needed actual on-the-ground help from staff well-trained crisis intervention and stabilization.

The merry-go-round of hospitalization continued and we received very little crisis support. There was a time when I begged and pleaded for an emergency medication review after Lexi ’s psychiatrist took her off of all of her psychiatric medications because of suspected serotonin syndrome and then was out of town the following week.

Wraparound told me there was no way this could be done. Because we used the emergency room at Michigan Medicine which is in Washtenaw County and not in Jackson County, home-based therapists were never involved in safety planning Lexi’s home after hospital visits or inpatient stays. We were expected to simply carry on with the same crisis plan and the same services that failed to stabilize the last time around.

I felt that I should be able to access mobile crisis or ICSS, but because Lexi had home-based therapy and they offered a 24-hour crisis line, I was told home-based kids could not access mobile crisis.

Even this year in February of 2022, after the language changed in the January 2022 provider manual, I was still told we could not access mobile crisis and we had to go through home-based instead.

No one was listening to me as my family struggled. My concerns got swept under the rug as I was repeatedly told that if I wanted crisis support I needed to call the home-based provider.

I was calling the home-based provider! They weren’t doing anything. I would call and they would ask me what I wanted them to do. My family was in crisis. I wanted them to do their jobs!

Because private insurance was the payor, utilization for all of these hospitalizations never hit the county’s ledger. My child’s cycle of hospitalizations was never brought up in Diversion Committee meetings and recommendations were never made. As to the Diversion Committee, the director of Utilization Management was brought into this case over a year ago through the diversion review.

It is also important to know that with the coverage of commercial insurance, LifeWays was not always made aware of the child’s inpatient admissions. Diversion Committee is an internal review committee and not a service provided to individuals. The records of committees assigned a peer review function are confidential internal documents and are not public

In my opinion, this response exactly identifies the problem while also illustrating there is nothing Lifeways was willing to do to fix their broken system. “Lifeways was not always made aware of the child’s inpatient admissions.” Yes, that exactly captures the breakdown of the coordination of care.

One of their SED Waiver kids was being routinely hospitalized, and the system didn’t even know. It certainly was not because I wasn’t telling the wraparound team.

At the end of December 2021, we made the decision to transfer Lexi to an out-of-state Residential Treatment Center that was paid for by primary insurance and out-of-pocket expenses. During her 6 month stay, Lexi was finally, out of crisis and finally beginning to stabilize and skill build. In late June 2021, Lexi was discharged home.

Lexi was home for almost a month before authorized CLS services were provided by a new CLS provider and even then the hours were not filled. There were problems identifying and hiring staff and getting staff in-service on the treatment plan.

A new CLS staff was hired, and a quick google search done revealed that she had a pending legal case because she allegedly shot her boyfriend.

Because of crisis failures, coordination of care failures, and CLS difficulties, we knew that when Lexi came home, we wanted our treatment plan to be a rock-solid roadmap. We wanted everyone on the team to see how they needed to work together to create a support system.

Instead, our treatment plan did not have clear goals, objectives, or interventions. Customer service at Midstate Health Network said that our plan was completely nonfunctional.

We tried to get the plan updated with specific staff interventions from June through September of 2021 when we then brought in an excellent independent facilitator selected by the family. We now know that we should have been told about independent facilitators at the beginning of our Person Centered Planning journey and not over 2 years in.

We spent 12 hours working with the independent facilitator and the wraparound team. Still, when we received the draft plan, it did not adequately describe the interventions as they were discussed in the person-centered planning meeting.

In late fall of 2022, Lexi started requesting a new therapist stating that she wanted to work with a female therapist. In late November of 2021, there was still no plan to transition Lexi to a new therapist, and Lexi said that she would not continue to meet with her current home-based therapist (a man) because she did not feel listened to.

The provider initially suggested that the two should work to reconcile the relationships. Lexi made it clear in no uncertain terms (including many middle fingers) that she was not interested in continuing the relationship.

We continued to advocate for a change in therapists. We stated we wanted a home-based therapist that could work with Lexi ’s neuro-diverse needs and we wanted the
therapist to be QIDP. We were told none of the home-based therapists were Qualified Intellectual and Developmental Professionals (QIDP), but the provider could continue to send non-QIDP therapists for crisis support.

They also recommended looking for a qualified outpatient therapist through primary insurance even though this would be a step down from home-based therapy that violated medical necessity. We then received an adverse benefits notification discontinuing home-based therapy services because the provider did not have QIDP therapists available.

It should be noted that this is a requirement in the Medicaid provider manual. We were still having difficulties with CLS and the identified CLS agency was not filling the number of authorized CLS hours. We filed a rights complaint citing failure to provide treatment suited to condition. The Office of Recipient Rights did not substantiate our claim.

They suggested we look for family friends to help out even though CLS is a medically necessary service that is part of the treatment team.

Lexi fell while at the skate park when she was with CLS. The CLS supervisor took her to the skate park in the rain. Her legs and arms were covered in bruises. Kids fall when they are skateboarding. I know that. I wasn’t upset that she was falling, but I did want documentation of how the bruising happened in case we were ever questioned by a doctor or a psychiatric emergency room.

Allegations of abuse are not to be taken lightly in this system. I was told by Lifeways that we did not have access to incident reports that CLS staff completed when our child was injured with CLS.

I wrote to cooperate with compliance. I was again told these were internal records. I pushed back again. The provider sent the incident reports.

We were experiencing endless system chaos. Every day I made phone calls, sent emails, called advocacy groups like Association for Children’s Mental Health, Disability Rights of Michigan, the Arc, NAMI, Disability Connect, and Mental Health Association in Michigan and these groups nudged me along and tried to help me come up with the next step.

I called the PIHP, wrote to the state, filed rights complaints and grievances. I got passed around from department to department, and no one was willing to take
responsibility and see these situations through to solutions.

I endured these countless hours of phone calls, paperwork, and ongoing meetings that often resulted only in setting up more meetings trying to get help for my child, help that has already been authorized but not being provided. It’s soul-crushing… and over 6
months later in June of 2022, we still do not have a home-based therapist for our teenager.

The future of our daughter depends on the help she receives now, and currently, the system cannot meet her needs. She continues to go without and the Community Mental Health system continues to take no responsibility for all of the ways they are failing to provide the care that shapes the way her future unfolds.