On the morning of June 14, 2009, my daughter, grandson and I headed north from our small town in Nebraska on the 90 mile trip to theBehavioral Health Hospital in Sioux Falls, South Dakota. My grandson, Nathan, had been acting extremely aggressive for 36 hours. He threw chairs across the room, punched the computer screen, and kicked and hit family members.
Nathan, who has been diagnosed with Bipolar, ADD and ODD, and also has a seizure disorder, had spent 11 months in residential care in 2008. He was discharged in December, 2008. Following his discharge we continued with weekly therapy and worked with a case manager to use all of the services available in our region. Unfortunately, since we live in rural Nebraska, not too many services are available for children with mental illnesses or for their families.
We had several months that were fine. Then Nathan became less able to control himself and concentrating in school became more and more difficult for him. The doctors adjusted his medications but nothing was working.
Were We Dreaming?
At the hospital, we heard exactly what we didn’t want to hear: The doctors believed that Nathan required very long-term residential care. Nathan’s behaviors had become increasingly more severe with each episode and he was not only a threat to himself but to his four siblings.
Unfortunately, it’s not easy to get a child into residential treatment in Nebraska (and many other states) unless the child is in foster care. His previous visit had required endless paperwork. Nathan’s treatment team knew that we’d face an uphill battle. It could take weeks or even months to get Nathan into a residential facility. But Nathan’s health insurance probably would not pay to keep him in the hospital until he was admitted to residential care.
The mood in the room was grim. Nathan needed intensive help and he needed it now.
At this point in the discussion, one of his therapists closed the door and said to my daughter, “I have a couple of things to discuss with you but I will deny this conversation ever took place. One: Have you ever considered just refusing to take Nathan home? Two: Have you considered giving up your rights?”
My daughter and I could not believe it. Were we hearing correctly? Were we dreaming? This from the mouth of one of the professionals we had been working with for five years?
No Safe Havens
My mind flashed back to the parents who had recently made news in Nebraska and nationwide because they had abandoned teenagers at hospitals, saying they could not handle their kids at home or access appropriate care. Parents took this drastic step after Nebraska had passed a “Safe Haven” law allowing parents to relinquish their children at hospitals for any reason. Legislators were expecting infants to be abandoned, not older children.
When the first story about an abandoned teenager reached the news, my heart ached for the family of this troubled child. Why should they have to give up their child just to receive medical care? Each time another child was dropped off, it was covered in the news. My daughter and I were thankful that we hadn’t had to make that choice with Nathan. We also contacted our state senator to discuss our own experiences accessing mental health services for Nathan.
Soon after, Nebraska State Senator Amanda McGill, who headed the “Children In Crisis Task Force,” contacted all of the families that had shared their stories with her. She invited us all to listen and share with others what we had experienced in our families.
We Needed a Movement
Following that gathering, many of the families decided that we wanted to pull together to change how Nebraska treated mentally ill children, not only for our children, but for all children. We formed a group called the Family Advocacy Movement. We didn’t want any more families to be denied mental/behavioral health care for other children, or to go through that battle alone.
Now, here we were, stuck in situation that many families had faced before us: considering placing Nathan in foster care, or abandoning him, in order to obtain the care he needed.
We left that meeting in a state of shock. Give up parental rights or refuse to take Nathan home? How could it be possible that those were our options, especially seven months after Nebraska had promised to improve services for children like Nathan. Besides, Nathan was covered by two private insurance policies and Medicaid. How could all of those insurers deny him the level of care recommended by his doctors?
As we reached the parking lot, I called a fellow member of the Family Advocacy Movement for support. She spread the word of our crisis, requesting that group members call and email their state senators. By the time my daughter and I reached our favorite place to eat, we had email messages and phone calls coming in from other families, offering support, asking for more information and letting us know we were not alone.
Determined to Fight
My daughter and I could not return to the hospital to see Nathan for three hours, so we had some time to plan our next move. We knew abandoning Nathan was not an option. We were going to fight for what Nathan needed. We were not going to back down.
That afternoon, we returned to the hospital and informed the doctors that we were going to fight with the insurers to get Nathan into residential care. The Behavioral Health Hospital staff were all supportive of our decision. The doctors and nurses there are extremely caring and understanding, and wonderful with Nathan.
Then we spent two hours visiting with Nathan. During the visit, we informed Nathan that his doctors were recommending long-term residential care. Nathan was not thrilled to hear this but seemed to accept it. Over the last couple of years, he’s started to recognize when when he is out of control and understand that he needs help.
My daughter and I talked with Magellan, a private insurance company that oversees all mental/behavioral health claims for Medicaid in Nebraska. Magellan’s first offer of care was Intense Outpatient Therapy. This would require our daughter, a single mom who works full time, to travel 180 miles round trip 3-4 days a week. This would not give Nathan the level of care necessary, and it would also adversely affect the entire family, so we said no.
Offer two came after our doctor spoke directly to a doctor from Magellan. This time, Megellan offered us Therapeutic Foster Care—Nathan would be placed with a foster parent who was trained to provide a therapeutic environment.
Our doctor felt that if Nathan was the only child in the home, the placement might help. But we discovered that, while Nathan would be the only “foster” child, the foster parents’ biological children would live there as well. Again, our doctors felt that this was not in Nathan’s best interest. The doctors explained to Magellan that Nathan would pose a risk to siblings.
We Chose to Appeal
Those were the only options we were offered. Magellan’s doctor didn’t feel that Nathan warranted residential care.
We could appeal that doctor’s decision, which meant that another doctor with Magellan would review the case and make a decision in 24 hours. In a single day, the doctor was going to review seven years of mental/behavioral health records and make a decision that would be in Nathan’s best interest?
We were told that if we decided to appeal this decision, Magellan could take these offers off the table. We could be offered even less care! Also, if we lost the appeal, Magellan could deny the need for the hospital stay and could bill his in-patient psychiatric care to my daughter. This would be thousands of dollars.
This felt like a threat—a move to make us back away from fighting for the level of care that Nathan’s treatment team recommended. Even so, we decided to appeal.
Making a Safety Plan
To ensure that we wouldn’t be billed for his hospital stay, we decided to bring Nathan back home. Our daughter simply could not afford risking a massive hospital bill! Nathan’s doctors allowed his release because we agreed that we’d have his siblings moved to their father’s house if he got out of control.
We were afraid to bring Nathan home. The family had been through hell and back over the past several weeks. But knew that we’d only put ourselves and Nathan through a longer, more painful ordeal if we accepted treatment that would not truly help him.
In emails and phone calls, Family Advocacy Movement members encouraged us to hang in there. They gave us the strength to fight. One family from Chicago had gone through a similar ordeal. They stayed in contact with us daily, sharing their experiences and letting us know what had worked for them. Members of the Family Advocacy Movement also offered to take Nathan’s siblings for a few days if needed. Just knowing that other people cared gave us inner strength.
Calling for Help
A few days before we had taken Nathan to the hospital, my daughter had arranged a phone call with Nebraska’s Speaker of the Legislature to discuss how the newly passed bill might help her or anyone else with a mentally ill child. She ended up talking with the Speaker on June 25th, the morning after we brought Nathan home.
At first, the Speaker would only say, “My job is to pass laws and develop appropriate funding, not get involved with personal matters.” My daughter just kept saying, “Tell me what direction I need to take to get the care my son so desperately needs.” Nathan was also part of the phone call. He told the Speaker that he wanted to go to Boys Town, a residential treatment center.
They were effective. By the end of the 40-minute conversion, the Speaker had asked who he needed to contact at Magellan and told us to keep him updated on Nathan’s situation. We emailed him some additional information and he made a call on Nathan’s behalf. By 4:30 that afternoon, the Speaker had spoken to Magellan.
Magellan called the next afternoon—we had won the appeal. Nathan was approved for residential care and Magellan would send out his information to see which facility had room and could provide the care he needed. The facilities had five days to respond.
By Wednesday, July 7, two facilities had refused to take him and two had agreed but would not have an available bed until mid-August. That evening, Nathan again went into what we call one of his meltdowns. He had threatened his 8-year-old brother with a baseball bat and his mom with a golf club. He had thrown everything in reach and was hitting and kicking again.
That day, Nathan’s father came to take his siblings out of the house for their safety. We headed back to the Sioux Falls hospital, where he was admitted. The following morning, Magellan again said that it would not approve his hospital stay, while the doctors said it was unsafe for him to return home. Another review was set up for the following day.
During the review, my daughter mentioned that she was going to update the Speaker on the situation. I don’t if that had an impact, but it seemed like, suddenly, there was a possible opening for a bed on July 14th. Just 45 minutes later we got a call that he could enter Boys Town on July 14. We were so relieved.
‘You’ll Never Be Far Away’
My daughter packed Nathan’s things for admission. She was sad and exhausted but relieved that Nathan would get the help he needed. We also made arrangements for all the kids to see him at the hospital before he left for Boys Town. We told Nathan, “You will never be far away. We’ll do whatever is needed to make sure we’ll all see you on a regular basis once you’re in placement. We’ll all be involved with your treatment.”
On the day before Nathan was to be admitted, my daughter and I drove to Omaha to tour the Boys Town facility and ask questions. The atmosphere and attitudes were so different from Nathan’s first facility! That was such a relief. We felt very comfortable with Nathan going there.
From Omaha we headed up the Interstate to see Nathan in Sioux Falls and to report to him what we thought about Boys Town. He was happy that we liked it. I know it made it easier for him to know that we approved.
Thankful for Support
The next day, we brought Nathan to boys Town. The staff showed him around and we spent some time setting up future appointments and visits before we had to say goodbye. We hated to leave him and cried. We told him that we loved him and that we would see him the following week. We assured him that we would be calling him on a regular basis
After we left Boys Town, we drove to the home of another member of Family Advocacy Movement, who had been very supportive through this difficult time. We held each other and cried. I felt so thankful for her support. How wonderful to have someone there for us throughout those 31 days of hell and ready to comfort us when we had to say goodbye to Nathan.
Despite the sadness we feel being separated from Nathan, we also had a great feeling of relief and satisfaction knowing that we had gotten the care Nathan needed.
Continuing to Advocate
Now Nathan is showing some improvement, and we have moved to Omaha so that we can be closer to him for visits and to be actively involved with his treatment. Nathan is looking forward to achieving the next level in his treatment plan and being able to come visit his new home and spend time with his three brothers and sister.
My daughter and I continue to work with our legislators to prevent other families from going through this painful process. My daughter and I have founded a group called Alphabet Soup Kids (A.S.K.) to bring together families of children with special needs. This year, we were trained as support group facilitators through the National Association for Mental Illness (NAMI) and run a family support group twice a month. I also serve on the NAMI Nebraska Board of Directors, while my daughter is on NAMI Omaha Board.
I also am part of the Boys Town Advisory Panel for the Nebraka Helpline and Family Navigator programs, which allow parents to call for help and be referred directly to services or assigned a Family Navigator to help them find the services that would best serve their child. Finally, my daughter is working as a Family Navigator. These are new programs in Nebraska. Families now have somewhere to turn for help and no longer have to feel that they are facing the battle alone.