People with disabilities are 2-4 times more likely to develop a Substance Use Disorder (SUD). In this episode, Jen Andrew, Sara Harrington, and Dane Mullis of Disability Rights of North Carolina engage in an important discussion about protections for those with SUD under disability laws on Legal Matters. Listen in at the link below!
Transcript
Jen Andrew:
The content of this program is intended for people who are blind, have low vision or print disabilities. Hello, this is Jen Andrew. I’m the communications coordinator for Disability Rights and I’m reading for the North Carolina Reading Service. For the next half hour, I’ll be presenting the latest legal matters. Today’s Legal Matters is underwritten by the Apex Lions Club, serving the community since 1937 by providing services and financial support for people who are blind, have low vision or print disabilities. To learn more about the services provided by the Apex Lions Club, go to Apexlions.org.
Jen Andrew:
Today I’ll be talking to Sarah Harrington, attorney with Disability Rights North Carolina and Dane Mullis, an advocate with Disability Rights North Carolina. We’ll be discussing substance use disorder, healthcare and discrimination. The work we’re discussing is funded by Vital Strategies. People with disabilities, including blindness and vision loss, are two to four times more likely to develop a substance use disorder than the general population. It is estimated that between 20% and 50% of people who are blind or have low vision also live with substance use disorder. First, let’s hear a little bit about both our guests before we dive in today’s topic. Sarah, I’ll start with you. Can you let our listeners know what’s your background, what brings you to this work and what’s your why?
Sarah Harrington:
Sure. I’m happy to thank you for having me today. I’ve been an attorney for 20 years. The first 14, I was a consumer bankruptcy attorney, and I helped individuals and couples who had debt problems. The most common reasons that people have to resort to bankruptcy or due to illness, death of a loved one, divorce or loss of job, and sometimes more than one. After that, I went into estate planning and a state administration, where I help people plan for their assets after death and administering a will after death. I was drawn to these areas because I wanted to make a difference in people’s lives during difficult times. And I wanted to do more to help more people. And that’s one thing that brought me to DRNC or Disability Rights North Carolina.
Sarah Harrington:
What brings me to this work is that I grew up in a community where people with disabilities were within our community, and the community found opportunities for them. So, I saw the possibilities of what an integrated lifestyle for people with disabilities would be like. In one organization I was in, we had classes for people with intellectual and developmental disabilities. We had programs for people with hearing impairments, sign language services, things like that. The community also has an integrated daycare now for children with all abilities, and that’s a great way to grow up. I’ve always been sensitive to the needs of people with disabilities because I grew up with them. I went to school with them.
Sarah Harrington:
And as I’ve gotten older, people in my family develop disabilities and they needed advocates. So, on the side, I’ve helped family members, I’ve helped friends access services that they required and that they had a right to on a pro bono basis. Through doing that, I worked with Disability Rights NC, and they were a great resource. And if my friends or family required a higher level of care or of knowledge of the ADA than I had, then the Disability Rights would take it over. So, I have been working with or following Disability Rights since 2011. And I’m just so happy to be here, be part of the organization.
Sarah Harrington:
I feel like at Disability Rights NC, I can do the most good for the most people. And that’s what I love about it. My why is that I’ve always been drawn to people who’ve experienced hardship. And I’ve always advocated for people who didn’t feel like they had a voice or that no one was listening to them. So, Disability Rights NC connects me to people that I can help and it gives me the resources to help those people.
Jen Andrew:
Interesting background. I appreciate you sharing with us. And your heart for service really shines through, so thank you so much. Dane, I’m going to ask you the same question. What’s your background? What brings you to this work? And what’s your why?
Dane Mullis:
Yeah, thanks, Jen, for having us. I’m really grateful to be here. My name is Dane. My background in substance use disorder, I would say probably began around 15 years ago through lived experience. So, I was in active addiction probably from around 2000, I want to say ’08 or ’09. Up until 2016 when I had decided to finally turn things around. And I think I always had the thought of going into the field to help people if I ever could get better myself because I felt like that was what I knew the best. Because I associated with people in active addiction and in recovery. And it just consumed my life whether I was actively using or in recovery, people around me were any of the other. So, I think I just got used to that. And for a long time just thought that eventually I would go into the field, but I just could never stay in recovery long enough for myself.
Dane Mullis:
But when I finally did, since then, I’ve been working in harm reduction as well as a counselor in substance use treatment centers in Western North Carolina since 2017. I’d say what’s brought me to this work, well, first I began my work with DRNC, Disability Rights in North Carolina, through interning while I was finishing school. And eventually these two projects opened up for substance use disorder and it just fell together perfectly. Just kind of like the right place, right time. And super grateful to be with Disability Rights North Carolina. I would say what brings me to the work is that I think I’ve lost countless friends over the last 10 to 15 years due to overdose. I feel like this is probably the strongest motivator for me wanting to become a social worker or work in the field of addiction in general.
Dane Mullis:
I myself have overdosed many times, so I know for a fact I would not be here today if it weren’t for the harm reduction agencies that are in place in the state that were there when I needed them. For my why, simply I just think it’s mostly in the statistics we’re seeing in relation to overdose and substance use. It just continues to become a larger epidemic for our country. It’s the leading cause of death right now with people under 55, and it just continues to go up. People are dying every day. So, I feel like the risk of overdose is a big part of what is my why. And it’s trying to potentially save lives any way we can, whether it’s through policy work or on the ground in advocacy and harm reduction work. So, thanks, Jen.
Jen Andrew:
Yeah, thank you for sharing your story. That’s so compelling. And again, you too, I can hear both of you. Your heart really shines through. And you’re absolutely right, it’s such a important issue right now. And having somebody advocate with lived experience is incredibly important. So, thank you for doing this work. I’m going to move into the questions about our topic today. Dane, how would you describe substance use disorder for people who might not be familiar?
Dane Mullis:
Yeah, so just in general, substance use disorder is a disease or disability that affects someone in all areas of their life. Usually causes quite a bit of unmanageability. But it is treatable and it is in the brain, and affects both your brain chemically as well as behaviors. So, depending on the severity, it can lead people to the inability to control the use of these substances. Addiction would be an example of a severe case of substance use disorder. So, someone in this type of position or usually the population that’s seeking treatment as they probably have multiple areas in their life that have been affected by their substance use.
Jen Andrew:
Thank you. Thank you. That really helps clarify things. I appreciate it. Sarah, my next question is for you. What does the ADA say about substance use disorder?
Sarah Harrington:
That’s a very good question. It’s a little complicated. So, the ADA protects people with a disability. And a person with a disability is someone who has a physical or mental impairment that substantially limits one or more major life activities. And a major life activity can include major bodily functions as well. Also, someone who has a history or a record of such impairment such as someone who’s in remission from cancer. And third, someone who is perceived by others to have a disability. So, substance use disorder is a unique animal in ADA. There is an exception.
Sarah Harrington:
So, people with substance use disorder are protected under the ADA as long as they are not currently using. That’s the exception. As long as they’re not currently using illegal substances. If they are currently in alcohol substance use disorder, that is covered. They’re covered under ADA. But if the person is using an illegal substance or if they’re misusing prescription medicines, then generally they are not protected under the ADA. However, there is an exception to the exception, and that is in healthcare. So, people who are currently using illicit substances are protected in healthcare and rehabilitation services. So, it is very complicated. So, people who are currently using are not protected with employment. They’re not protected under the ADA dealing with the state and local government. They’re not protected in restaurants and public accommodations. But they are protected, fully protected, in healthcare and rehabilitation settings.
Jen Andrew:
Yeah, thank you for explaining that. I think a lot of people don’t understand the nuance there. And it’s good to hear that there’s protections in place. Thank you. Dane, this question’s for you. Are there treatments for substance use disorder?
Dane Mullis:
I was on mute.
Sarah Harrington:
That’s okay.
Dane Mullis:
Thank you for asking that again.
Jen Andrew:
Sure.
Dane Mullis:
Yes, there are many different models. Most commonly I feel like residential treatment centers are used the most in conjunction with therapy or behavioral modalities. But there’s also medically assisted treatments which have become a lot more common, especially in the fight against opioid use. So, the opioid epidemic. But again, medically assisted treatments are also used in conjunction with counseling and behavioral therapy. So, all of these are evidence-based practices in treating substance use and opioid use disorder, and have proven to be effective. But we’ll definitely be talking a little more about medically assisted treatments today as the benefits related to overdose are pretty significant.
Jen Andrew:
Thank you. Thank you for explaining that. Sarah, why do you think healthcare discrimination is such a problem and what causes it?
Sarah Harrington:
So, healthcare discrimination is a problem primarily because of stigma and ignorance. But also substance use disorder is the last frontier of Disability Rights. It’s the last that I know of the disabilities to be protected. And so, a lot of people, people that have substance use disorder, people who treat people with substance use disorder, they don’t realize that this is a protected group. So, that’s another thing. Another problem that I see, and I see this with other kinds of disability is, people tend to want to stick with the status quo. They don’t want to change. They don’t want to resort to creative problem solving, because they figure if it’s the way we’ve always done it, it’s the way it should always be and it’s not the case.
Sarah Harrington:
There’s also the history of substance use disorder being treated as a moral failing instead of a disease. And that’s one of the worst parts. Because in that instance, the treatment does not match the disease. And people are treated terribly because they’re seen as less than or they’re seen as having a bad character when it’s just a disease. You would not treat someone with diabetes the same way if they ate a cookie. You wouldn’t treat somebody with pet allergies the same way if they pet a dog. So, why should you treat someone with substance use disorder like they have a moral failing or some lacking in their character? They just have a disease.
Jen Andrew:
Absolutely. Thank you. It sounds so incredibly frustrating to be seeking care and then be met with outdated treatment modalities or things that increase somebody’s shame. So, thank you for explaining that. On that note, what are some ways you’ve seen or heard people with substance use disorder being discriminated against in healthcare? You touched on it a little bit, but are there any other specific examples?
Sarah Harrington:
Well, when we first started this project, we thought we’re going to see it in hospitals, we’re going to see it in rehabilitation centers. But we have seen it across the board throughout the whole system of the medical and healthcare system. We’ve seen it in pharmacies where they won’t carry the medically assisted treatment. We’ve seen it in first responders that will not carry naloxone. And naloxone for those who don’t know, is a medicine that can reverse an overdose and bring someone back to life. But if you give it to someone that’s not on opioids, it’ll be like giving them water. So, there’s no downside to carrying naloxone.
Sarah Harrington:
We see it in skilled nursing facilities that will not allow people who are getting treatment for opioid use disorders or other substance use disorders to be patients. If there’s any history of substance use disorder, they often won’t admit them. We see it in hospitals that treat people differently and take away their rights because they have a history of substance use disorder. We see it in primary care physicians that either won’t take someone on as a patient or they won’t give them a referral to a specialist because they’re currently using. So, I could go on. I mean I could use the whole 30 minutes talking about that.
Jen Andrew:
It sounds like that’s really frustrating. So, what might be some things to keep in mind for folks? What rights does somebody with substance use disorder have when it comes to healthcare?
Sarah Harrington:
So, they have the right to be treated. They have the right to get just period. Healthcare providers and rehabilitation treatment centers have to treat them, whether they’re currently using or not. Whether it’s convenient for them or not. Whether they morally agree with substance use disorder or not. And they have the right to be treated not only for their non-substance use disorder ailments, which is usually what they get, but also treatment so that they don’t go into withdrawal. Because withdrawal is painful. It is miserable. And often facilities don’t treat to prevent the withdrawal and that causes the person not to get treatment for the other, because the withdrawal symptoms are so terrible. It’s worse than the appendicitis or whatever they came in for, so they leave. So, I got a little far afoot there. But basically people who have a history of substance use disorder, people who are actively using, they have the same rights to healthcare as anybody else that isn’t using.
Jen Andrew:
Thank you. And Dane, you touched on this a little bit before in terms of treatment options. But what medications are including or included when referring to MAT and MOUD? And can you define both of those terms for our audience?
Dane Mullis:
Yeah, of course. So, MAT would be Medically Assisted Treatment. And MOUD would be Medications for Opioid Use Disorder. So, MAT would be more of the full spectrum of medications in treatment, whether it’s opioid use, alcohol or other substances. MOUD would refer specifically to medications for opioid use disorder. Some of these medications, the most common ones right now were addressing the opioid epidemic. So, there are medications for opioid use disorder. And buprenorphine, also known as suboxone and methadone. Those are the two common ones that are prescribed. And there’s also naltrexone, which is another commonly prescribed one. All are somewhat different but also the same. And another one worth mentioning would be disulfram, which is referred to as anti-abuse. And this is a commonly used medication for alcohol use disorder.
Jen Andrew:
Thank you. Can you explain what the benefits are of these treatment modalities?
Dane Mullis:
Yes, absolutely. So, some of the more important benefits, especially in relation to the ones I just mentioned, the commonly prescribed ones are the lowering of cravings. So, the cravings to use opioids or with disulfram would be alcohol. So, the cravings for those substances would be lowered significantly. When it comes to MOUD medications like suboxone, and methadone, and naltrexone, they actually block other opioids. So, someone could not if they were… Say they were on heroin and they have gotten on suboxone or methadone, and they’ve been on it now for a bit, if they were to have a lapse and try to use heroin or let’s say fentanyl or any other illicit opioid, the medication would actually block the opioids reaching the receptors.
Dane Mullis:
Some other benefits are far safer withdrawal, so you’re not experiencing these intense withdrawal symptoms that we’ve been mentioning that are associated with opioid use disorder. A very significant reduction in the risk of overdose. Some of the chemical components of these medications, especially in relation to suboxone and naltrexone, because they have naloxone in them, so they actually block other opioids completely. And also the increases in treatment retention by using these safe control medications are a very major benefit. And then also the relapse prevention in conjunction with counseling and behavioral therapies while in treatment has shown to significantly reduce the likelihood of relapse upon leaving treatment.
Jen Andrew:
Thank you. Thank you for explaining all that. I know there’s a lot of Misinformation out there. So, I wondered, can you clarify, can participants on MAT or MOUD get high on the medications?
Dane Mullis:
It’s a very good question. This is a very common thing that’s said about these medications. Basically, the easiest way to put this is that these medications, when they’re prescribed in correct dosages, and they’re taken as prescribed, no, someone cannot get high on them. If they have a substance use disorder, the effects that are produced by these medications are far less than that of illicit opioids. They’re known as agonist medications. So, they actually produce an effect much like the other opioids, which that’s how the reduction of cravings occur. But this effect that it produces is far less than illicit opiates. Like I said before, it doesn’t really produce a high, it’s just engaging that receptor in the brain to try to reduce craving. So, that would be my best way of explaining that. There’s still a lot of people that still think that people get high on these, that it’s just replacing one for the other. But all the signs and the facts show us that that’s an application.
Jen Andrew:
Thank you. Thank you. So, it sounds like they’re pretty safe. Is that what you’d say?
Dane Mullis:
Oh, yes. Yeah, they’re very safe.
Jen Andrew:
Excellent. And how long generally are participants on MAT or MOUD?
Dane Mullis:
Also, in relation to the previous question, I know buprenorphine or suboxone actually even has a ceiling effect. So, after certain dosage, it actually does nothing, which also makes it even safer. I will say methadone does have a little bit higher of a risk. But that is because it’s usually related to other substances being used in combination with it, so that can be dangerous. But as for the medication itself, it’s very safe.
Jen Andrew:
Thank you. I just ask in general, how long are participants on both MAT and MOUD?
Dane Mullis:
Gotcha. So, there’s three main phases of MAT. So, it’s typically induction, which is the first few days for the detox period. Stabilization would be the second phase. That usually lasts several weeks while someone’s either in treatment or in outpatient treatment, some form of treatment. And then the last phase would be maintenance. And this can last as long as it takes really. It could be several months, it could be years, it could be the rest of a person’s life. It’s really based on that person’s situation, their agreement with their doctor, what their doctor thinks that they should do. This should definitely be chosen by a medical provider and their patient. I will say typically it has begun the detox phase. And following detox, the individual can decide whether they want to continue MAT or MOUD long-term, or pursue more of an abstinence. But again, I would say this mostly falls down to the situation of the client and their doctor’s opinion on their situation.
Jen Andrew:
Thank you. This is definitely a challenging topic, and I’m so glad to know that you both are advocating and working in this area. What would you say briefly gives you hope as you do this work and moving forward? Sarah, do you want to start?
Sarah Harrington:
I’ll start. Actually preparing for this interview gave me a lot of hope because we talked about a lot of the places that are doing things right and remembered all the people that are so dedicated to the cause of helping people recover from SUD, and also helping harm reduction agencies that try to make people as healthy as possible while they are using and prevent deaths. So, day-to-day, we hear a lot about the things that are going the wrong, a lot of the discrimination, a lot of the negatives. But looking at all the areas, all the organizations that are doing things right is really heartening. And some of the unexpected partnerships, the public-private partnerships are really exciting. So, I have hope that it’s going to get better.
Jen Andrew:
Thank you. Would you say similar things, Dane?
Dane Mullis:
Yeah, definitely. I agree with all what Sarah said, for sure.
Jen Andrew:
Thank you.
Dane Mullis:
Some other things I would say when I hear stories about people being brought back from overdoses, and getting better, and getting their lives back, that’s definitely brings about a lot of hope. Any story like that. Also, I would say this whole last… I guess this month, September, but also the end of August with it being Overdose Awareness Day was the last day of August, and then now this month being a recovery month, I’ve been to a handful of events for recovery month as well as Overdose Awareness Day. And just seeing a lot of harm reduction agencies put on these events and just seeing all these people out there that a lot of them are just out there on their own free time. They’re not out there for a job, or to make money, or anything. They’re out there because they see this issue, they see that it’s important. And they want to know how they can help their community or what they can do to be a part of the solution.
Dane Mullis:
And that’s a beautiful thing because I feel like in this society, a lot of things come down to money. A lot of us struggle to pay bills, A lot of us struggle paycheck to paycheck, and you see somebody taking time out of their day to volunteer at a harm reduction agency, or just trying to advocate for this population. It’s something that brings about a lot of hope for sure.
Jen Andrew:
Thank you. Thank you both for being here today. I hope you’ve enjoyed today’s episode of Legal Matters. For more information, you can visit disabilityrightsnc.org. I’m Jen Andrew, reading for the North Carolina Reading Service. Today’s episode is underwritten by the Apex Lions Club, serving the community since 1937 by providing services and financial support for people who are blind, have low vision, or print disabilities. To learn more about the services provided by the Apex Lions Club, go to apexlions.org. The content of this program is intended for people who are blind, have low vision, or print disabilities. This broadcast is readily available as a podcast at our website, ncreadingservice.org. If you have any comments or questions, please give us a call at 919-832-5138. So, long until next time, and thank you for tuning in.