The system that is intended to support people with disabilities isn’t adapted to their needs.
Celeste Brustowicz was a defense lawyer for 33 years. Now, she’s giving her considerable talent to a new effort to protect some of the most vulnerable people affected by opioid addiction: babies and children of parents with substance use disorder. She’s spent the last year seeking to create a national trust for opioid-dependent babies and the people who adopted, birthed, or fostered them within current national litigation on the opioid epidemic.
The fund, which would be part of the national settlement worked out by a federal judge now meeting with opioid manufacturers and distributors, would pay for the children’s education, medical care, life expenses, and other supports for the duration of their lives. It also gives them a leg up in a system that isn’t easy to navigate and is slow to provide financial support for people with substance use disorder and other disabilities. In partnership with the Opioid Justice Team, Brustowicz seeks to give a voice to babies with neonatal abstinence syndrome (NAS) and provide them with a future beyond the opioid epidemic.
What made you want to create a national trust for NAS babies?
Essentially, people with substance use disorder are disabled. The system that is intended to support people with disabilities isn’t adapted to their needs. It’s not doing what it’s intended to do.
Two things happened that got me involved with the nation’s opioid crisis.
First, my mother passed. I’m the the oldest of five; my younger brother had meningitis, and I was caring for him. I moved him to New Orleans in order to do that, and it took 90 days for the state just to check his address to get social services. Making sure he was taken care of was difficult, a real headache. I experienced first-hand that walking through those systems, even as a lawyer, was very cumbersome.
Secondly, in my defense practice, I’d represented foster families or suits about how a child was being cared for. I always thought foster care was a really nice group of people, working toward a common goal. Foster parents need resources to help them and one-size does not fit all.
Then, a college friend called me up and said “Let’s do something about the opioid crisis and how it is impacting families.” I started reading about it. I read congressional hearings from 2000-2001 about the efforts people were making in places like Maine, Pennsylvania, Kentucky, and West Virginia. They all showed the same pattern. In each case, all of the state’s resources were laser focused on adult addiction problems. They did the research, implemented all these great ideas, and spent a boatload of money, but in every state, the problem just got so much worse.
It was clear to me that we had to do something for the children affected by this epidemic. Nobody was speaking up for them, not the babies born to dependent moms and not the children abandoned by parents who are abusing The system that was in place wasn’t equipped to do it. We had to create a solution.
Do people with substance use disorder have different rights?
If you’re in active addiction and a danger, you can be institutionalized against your will. You can lose your children because you’re not caring for them. When you’re in recovery, the laws treat you the same as everyone else. But that’s making it about criminal justice. Substance use disorder is a medical problem. If people are disabled by addiction, the laws should protect them.
When we look beyond the individual, as when we started looking at the children involved in the opioid epidemic, it gets more complex. How and where do you begin to seek relief? If and when you sue a state, like Louisiana or Oregon, you can’t bring them to federal court unless they’re in violation of a federal law. We’re not suing states. When you have lots of parties and class actions proposed, like currently in this opioid crisis, those cases can go through the state in order to bring it to federal court.
So that is what we started doing on behalf of these children: We filed 13 suits in different states on behalf of NAS babies in order to get to federal court and hopefully before the federal judge now negotiating the settlement for the various classes—babies, adults, states, hospitals—impacted by the opioid crisis. At first, the children got sucked into these other packaged lawsuits, and into a formula-type settlement much like that used in the 1980s for the tobacco litigation. We knew this would not work for children:. These suits that are not a place for personal injury assessment. To make sure our claims are properly heard, we asked for a separate MDL, or separate multi-district legislation. This discussion is ongoing now.
Our moms were prescribed pills, so our babies have a problem. A government’s claim is different than a baby’s claim. This is a special case, so it needs to be handled differently.
How are children affected by opioid use?
The opioid crisis is a huge calamity. One third of pregnant women in this nation are prescribed opioids. That doesn’t mean that these women all have substance use disorder, but we don’t know what the outcome is for the baby. One million babies are born a year and 10,000 of those are NAS babies. Lawsuits take time: this issue has been pending before the federal judge for a year this February. So, we need to include all the babies that are conceived and born over the life of this lawsuit. Let’s say we set up a fund today: those babies should be able to join in that too.
Opioid dependent children will have cognitive issues while they are gestating, since they were exposed to opioids in the womb. Looking down the road, when the kid’s grown and in high school, at a party with beer and pot, are they more susceptible to addiction? It can set them up later in life to be vulnerable. That person would be able to go back to the fund and get help for treatment and recovery support. It should follow the person through their life.
But in truth, that is not what is likely for more of these children. Most NAS babies will never be fully functioning teens or adults who interact at parties because of physical and mental challenges.
How do you measure success? What’s the ideal outcome?
What we’re creating should be a replenished, renewable fund. It doesn’t just benefit one group, either. Think of the database of medical info that you’d have from this population of children: doctors could use this information, learn how to treat this population.
Addiction is a medical problem with legal consequences. We hope that the fund will ease that.
Most importantly, I want to make sure the fund is accessible and not full of bureaucracy. A lot of foster children, it’s hard enough to get them adopted. If you had a choice of two babies, one with NAS and one without, you’d probably choose the one without. We want to make caring for the NAS babies more sustainable for foster parents.
More opioid-dependent children are being born every day. We need to make this change, and make it soon. If we can’t get meaningful treatment to these kids before the age of 4 or 5, it’s not going to improve their lives in a meaningful way.
Later in life, we’ll need to think about access to recovery care. The influence of opioids might show up again when they’re a teenager, or when they’re in their 20s. The early years are critical, and the long term needs must be taken into account.
At the end of the day, our clients—and hopefully the clients we don’t have yet—all those babies will get something that will make their lives better.