Our story started in October 2020. Since then our thirteen-year-old daughter Aliyah has spent 344 days and counting in one form of hospital or another due to continuing suicidal ideation and self-harming behavior.
When we first started this journey with our daughter, we only had private insurance through Priority Health and state Medicaid received when we adopted our daughter and her brother in 2012. Since then, we have added services through Ottawa County CMH and a SED waiver.
Prior to October 2020 Aliyah was succeeding at school, had friends and was on a travelling competitive tumbling and trampoline gymnastics team. She had some difficulties emotionally due to trying to process being adopted, what it meant to be removed from her biological parents care at the age of two and the beginning stages of remembering abuse in the foster care system.
It wasn’t until all of the covid shutdowns took her access to school, friends, and gymnastics away that we saw a drastic decline in her mental health that led to where we are now with almost constant suicidal thoughts, daily self-harm that has increasingly gotten worse to the point where during her current hospital stay she is ripping her own fingernails out root and all.
Aliyah is currently on her sixth stay at Helen Devos Children’s Hospital. This is her third stay which has been 30+ days and her fourth which will result in no placement in a mental health inpatient facility.
During Aliyah’s first two stays in inpatient treatment at Pine Rest she went from just having suicidal thoughts to self-harming and being very aggressive with staff resulting in being placed in soft restraints multiple times a day. She is unable to manage her emotions and acts very impulsively when her emotions get too big.
Since February 2021, all inpatient facilities within the state of Michigan have denied admission to our daughter due to a multitude of reasons: no beds; acuity; chronicity; long wait lists for 1:1 care; etc. We still cannot grasp how they can deny for acuity and chronicity since these two things contradict each other.
Some short-term inpatient facilities deny stating she needs longer-term residential care. However, Priority Health states she needs ongoing home-based services.
Again, contradicting recommendations.
With the large number of children needing inpatient care in today’s world so many facilities can pick and choose which kids they admit and which ones they refuse care to. In too many instances they are choosing the cases that are easier to treat and declining admission to the kids that need help the most because they are the more difficult cases to manage.
In August of 2021 due to the lack of availability of beds within Michigan facilities, we were able to look outside the state for placement and found a residential facility in Savanah Georgia that was willing to accept Aliyah into their 6-month program.
We moved Aliyah from Helen Devos to Coastal Harbor residential on August 13, 2021, where she lived and went to all-day therapy, DBT, school, etc. every day until Priority Health forced us to bring her home on December 5 three months short of competing the program.
From October 2021 we had twice-weekly meetings with Coastal Harbor staff, Priority Health and CMH to discuss Aliyah’s placement at Coastal Harbor. Priority Health was always pushing for discharge home even when Aliyah was still not only voicing suicidal plans but also still actively trying to kill herself while at Coastal Harbor.
Priority Health’s reasoning for pushing for discharge was that she was failing at treatment so there was no reason for her to stay. We fought weekly with them to keep her in care. It took until mid-November for Aliyah to finally agree to try to participate in her treatment plan at the residential facility and start to show improvement.
As soon as she started to show even the smallest improvement Priority Health changed its reason for wanting discharge from failing at treatment to succeeding at treatment.
At first her doctor at Coastal Harbor was on the side of her needing to remain in treatment stating “it would be criminal to discharge Aliyah home in her current mental state” but due to Priority Health’s continued pushing for discharge and threats to not pay for her residential stay the facility changed their minds siding with discharge after only two days of additional treatment.
After discharge, Aliyah made it home 30 days before attempting to hurt herself at school on January 5, 2022, resulting in another admission to Helen Devos. This time they didn’t even try to get her admission into an inpatient facility, they didn’t want to admit her at all despite the fact that Aliyah would tell every doctor and nurse who came into her room “you can’t make me use the tools from therapy, if I want to die it’s my choice and no one can stop me from killing myself.”
While in this five-day admission the psychiatrist at Helen Devos made the diagnosis that Aliyah is not safe to go to a traditional school setting because there is not enough supervision to keep her from hurting herself while at school.
This resulted in her having to do online/virtual school. She is currently failing all her classes since she was placed in seventh-grade classes based on her age not considering that fourth grade is truly the last year, she received a full education. Fifth grade was done half at home due to covid shutdowns and little was learned because teachers did not know how to educate virtually since it was such a last-minute change due to the pandemic. Then Aliyah was hospitalized for 90% of her sixth-grade year.
On February 8, 2022, Aliyah again tried to end her life while at home. She tried to jump off the back deck on the second story of the home multiple times resulting in the Ottawa County Sheriff having to come to our home to secure her until the ambulance could arrive to take her again to Helen Devos Children’s hospital.
While the Sheriffs were at our home, she attempted to take their firearms and continued to try to hurt herself by banging her head against the floor. The two sheriffs that were at our home were amazing at trying to keep her safe from herself while also trying to calm her down.
Unfortunately, she had to be restrained to the stretcher when the ambulance arrived. When we arrived, again, at the Helen Devos children’s ER, Aliyah was again admitted for observation at the Helen Devos Children’s Hospital where she has been for over 30 days.
While she is at Helen Devos, she does not receive any psychiatric care, and very minimal medication management. When my husband and I, along with her CMH therapist, have requested med changes, supported by her outpatient psychiatrist we have been told by Helen Devos staff that they are a “medical hospital not a mental health facility.”
While at Helen Devos Aliyah is under 24-hour supervision by a nurse that sits outside her closed door and watches her through a window, she has only a mattress on the floor with no bed because she has in the past broken pieces of the bed off to self-harm with.
Aliyah is not allowed to use any utensils when she eats her meals because she will use them to self-harm. If there is a part of her meal that cannot be eaten with her fingers, they tear a piece of Styrofoam for her to use as a spoon.
As I stated earlier, she has resorted to pulling her own fingernails out because it is the only way for her to self-harm now that they have restricted her so fully while at the hospital.
Despite her continued success at harming herself under constant supervision Priority Health still recommends discharge home where it would be impossible to provide the same level of 24-hour constant supervision.
During this admission, we have weekly care conferences with Helen Devos staff, Priority Health staff, CMH staff and her outpatient psychiatrist. During every care conference Priority Health has advocated for discharge home to the least restrictive environment despite CMH and originally Helen Devos advocating for continued inpatient care.
We have not been able to find any inpatient facility that will accept Aliyah. Again they state she needs longer-term care, more intense care than she can receive at the short-term inpatient settings, and they recommend residential care.
Aliyah’s CMH therapist has continued her weekly visits with Aliyah through this current admission. This past week on Thursday, March 10 the CMH therapist had the Helen Devos staff join her during her meeting with Aliyah because Aliyah has continued to voice a very thought-out detailed plan to end her life upon discharge.
During the joint meeting Aliyah again voiced the plan to both Helen Devos and CMH staff. Aliyah’s plan has times, dates, and the place she intends to end her life. Despite this joint meeting we received an email from Helen Devos on March 11 stating they are still seeking discharge home with the plan being that additional services through CMH is the proper path to take for Aliyah.
Both I and her CMH therapist replied to this email requesting reconsideration of the discharge since no changes to the homebased services have occurred from prior to her admission to now due to lack of availability and Aliyah’s continued active plan to end her life.
The home-based service treatment plan for Aliyah includes home-based therapy twice a week; CLS four hours a week; youth peer support; parent peer support; recreational therapy and a suggestion for DBT therapy which needs to be obtained outside CMH.
Despite all these services being authorized through CMH the only services we are receiving are home-based therapy and peer support. CLS has been referred to an outside provider because the need for CLS workers is so high the county cannot provide care to all the patients.
We have spoken to the outside agency who also stated that after the initial meeting with the family they will need to hire staff to accommodate the needs of the community.
Recreational therapy also has a waitlist. We have put Aliyah on two different waitlists for DBT however these lists are over six months long. The needs of the children in the community across the state far exceed the availability of services for these children.
It has been heartbreaking over the last eighteen months to fight so hard every day to get our child help that just is not available. We have reached out to attorneys; state representatives; congressmen; and many outpatient therapists.
Everyone we speak to tells us the same thing “the system is broken;” how can so many people know a system is broken but no changes are being made to fix the system in a timely manner?
I think the most heartbreaking thing we have been told throughout this process by numerous sources is that the only way to get out daughter the help she so desperately needs would be to relinquish our parental rights to our daughter back to the State of Michigan and put her back in the foster system.
Every time we are told this we have thought “this can’t be an option” “this can’t be true that foster kids get help faster than kids with families.” However, during this last admission to Helen Devos we found out that sadly this is true. We were told that the wait list for the state hospital is a yearlong for Aliyah, but Helen Devos placed a foster child into the state hospital within a week.
In no world should the only option to help a child traumatized by her life in the foster system so badly that she wants to end her life be to place her back into the foster system. Just because she has an adoptive family who loves her should not mean she has to wait longer for care.
There is so much more we could write but this summarizes our story well, we truly feel that if she is discharged from this admission without any real psychiatric treatment at either an inpatient short-term facility or another residential facility, we will lose our daughter to suicide.