Link to Virtual Panel Discussion, Session 1
[Transcript with visual descriptions: Video opens with an introductory image. On-screen text reads: Mental Health and the Deaf Community: Virtual Panel Discussion. Session 1: Accessing Mental Health Services. Four images: Sarah Glenn-Smith - Moderator. Brittney Granger - Panelist. Elisa Valles - Panelist. Melissa Anderson - Panelist. On-screen text reads: #WeAreInThisTogether. The Learning Center for the Deaf. www.TLCdeaf.org.]
[The video continues with the moderator and panelists in four boxes. On the screen. Sarah: Top left. Elisa: Top right. Brittney: Bottom left. Melissa: Bottom right. As the four discuss, text appears on screen periodically. On-screen text reads: Learn more about Advocates: www.advocates.org/services/deaf-services.]
Sarah: Thank you so much to all of you for being here, volunteering your time to have this open dialogue about a really important topic that is impacting us so much in our world today. We’ll start with introductions and then dive right into the discussion. If you have anything to add at any point, just raise your hand and we’ll be sure to take turns. Hello, everyone. My name is Sarah Glenn-Smith. I’m the CEO at The Learning Center for the Deaf.
Elisa: Hello, I’m Elisa Valles. I’m the program director at Walden Community Services.
Brittney: Hi, I’m Brittney Granger, clinical director of Deaf Services Advocates.
Melissa: Hello everyone. I’m Melissa Anderson. I’m a hearing psychologist working for U Mass Medical School providing counseling services for Deaf clients with a specialization in trauma and addiction.
Sarah: Really this is a new experience for all of us. Typically, a group like this would get together in person and brainstorm new strategies and approaches to challenges we see in the mental health field. And now to be doing this through technology, it’s become our new norm and I think as we settle in on recognizing that it gives us more of an opportunity to get the word out. So that’s great, of course there are pros and cons. So, Elisa, if I could ask you, what was your initial goal or thought when you called us to come together as a group?
Elisa: For me, this started with a panel that I had seen in Framingham and it was open to the general public. People could watch it through Zoom and I thought “where is our panel for the Deaf community?” There’s so many gaps in services so it would be nice if we were able to have different people from Massachusetts to be able to have a panel and talk about what is happening right now and how we are approaching those issues. So it would be great if this could be a series and people could watch them as they needed and they could know that we’re here and available and we have ideas to really put out there to the community.
Sarah: Well thank you Elisa for hosting this first session and for starting a really important dialogue. I’m gonna go ahead and get started with the first question, which will be for Brittney. I’m curious, of course you have clients, patients and families that you have supported all along, and since coronavirus everything has closed. The way we live, the way we work, our norms have changed. So how has that changed your interaction and the work you do with your clients?
Brittney: Thank you, Sarah, for the question. I’ve noticed that the people we support are absolutely challenged by the closures. And these are individuals who are already experiencing delays and extended wait times when it comes to accessing services within their communities. So they’re facing some rather severe challenges right now. And then when you consider the added stress of needing to wear masks, which leads to more communication barriers as those Deaf individuals can no longer see the person they’re interacting with, and this also leads to some people being isolated in their homes. And some people do have access to technology, such as a laptop, that still allows them the opportunity to connect remotely on platforms such as Zoom, as we’re doing today, but not everyone has that option. And other needs such as important doctors appointments, court cases, counseling services, therapy, etc are no longer accessible due to the closures that we’re seeing. All of our regular lives have been put on hold but not everyone has the ability to maintain contact with their support staff, or even to receive updates from the governor regarding local reopening plans. And this means that our staff have been limited in what they’re able to provide. And without the ability to meet up with our clients in person, we’ve had to become creative in how we reach out. And maybe this means meeting in person but keeping at least 6 feet between ourselves and our clients. But it’s been a really big challenge for all of us right now but an even worse challenge for the people who need our support.
Sarah: You touched on the limitations that technology poses as far as accessing services. Can you also comment on the impact of required masks for the Deaf population?
Brittney: It’s different. It’s definitely more limiting for Deaf individuals. And I’ve already heard stories from some of the people we support describing times when they tried to go to the grocery store, for example, and the grocery store workers are wearing masks and our clients cannot see the worker is speaking behind the mask so they have no idea that someone is trying to talk to them. And when they don’t respond, the line of people behind them starts to become angry and our clients start to feel stressed and paranoid because they can’t understand what’s happening around them. And you have to understand that these are Deaf individuals who are already struggling with mental health challenges so I feel like it increases their sense of isolation, of paranoia, and they feel as though people around them don’t like them. And it feels very unsafe. Even simple things, like going to the store to get food, have become incredibly complicated and difficult now. So we’ve needed to work closely with our clients to help prepare them before entering a store. We want to make sure they feel ready, they know what to expect, and they have an established plan that explains how to feel safe, how to practice self care. It’s really important work that our team is doing right now with the community.
Sarah: Melissa, same question to you. How has the coronavirus impacted your work with the patients and clients?
Melissa: Well, like Brittney just mentioned, it feels like people’s lives are being put on hold. And in the same respect, people’s counseling goals are being put on hold as well. So before this outbreak, I had clients who had a variety of goals they were working on in counseling. Whether it be depression, anxiety, trauma, issues with work or school, it really ran the gamut. And now all of the sudden it feels like everybody has the same counseling goal right now. And that is to get through and navigate this situation as best as possible to find ways to cope with what’s going on. So, yeah, it used to be a mix of work that I was focusing on with my clients and now we’ve all got the same goal. And that includes myself. And I think that’s one of the biggest challenges, that we are all in this together, we are all in the same boat and going through the same type of issues and problems and challenges. We’re dealing with that sense of the unknown, the unpredictability of the situation. So I think especially for counseling work, it’s a challenge for me to really be careful about my own self disclosure because it can be, when you’re struggling in the same way that your client is struggling, you’re more likely to cross boundaries with self disclosure. So I think that’s one area of consideration for my own work, how I can support my clients but at the same time make sure I’m receiving the support that I need in this moment, without overstepping boundaries, without over self disclosing because we’re all going through the same situation and the same problems right now.
Sarah: How does the work you’re doing feel different when you compare your Deaf clients to the general population?
Melissa: That is interesting. So, at U Mass, we did change from in person counseling sessions to Telehealth counseling, pretty immediately. It was within a week or two that that change occurred. And my Deaf clients were ready! It was very easy as far as the transition for them. Deaf clients took to Telehealth counseling very quickly and there has been a cry for that type of service in the past. Issues with transportation or child care or being sick, Telehealth counseling really has a lot of benefits to being able to provide the services even when those issues come up. And we haven’t traditionally been providing Telehealth so now that this opportunity is here, it’s been great! I have noticed that non-Deaf folks struggle a little more, trying to get used to the technology, of course. People who are not Deaf use FaceTime, but they’re not using it on a daily basis like the Deaf clients are. And so making that change and trying to transition to a more technological platform is taking those folks who are not Deaf a little more time to get used to. So that’s one thing that I’ve noticed.
Sarah: That’s interesting. Very trying times, I think. People are always looking for the silver lining. What’s a positive outcome that has occurred and of course, historically, we’ve wanted to offer Telehealth services for the Deaf community and there have been so many barriers in place. Now, with this new time of flexibility, we’re actually seeing an increase of access to those services.
Melissa: Yes. So what we’ve noticed is that since we’ve started providing more Telehealth counseling, referrals have increased dramatically. And it’s from those folks, in the past, have not been able to come due to other issues, like transportation. And I wish this were fully available for all new referrals but unfortunately it’s not. So what I’ve noticed in the last two months is with the number of referrals, it really is those folks who are struggling with child care, who do not have transportation, or other barriers that are keeping them from coming. So I’m hoping and looking forward to seeing what comes in the future and hopefully we are allowed to provide more Telehealth counseling. I personally feel like it should be an option. It may not be the best approach for everybody, but it’s always a great backup. Unfortunately, we depend on what the larger insurance companies decide, if they’re willing to pay for or not. And so we are a little stuck in having to follow the money, unfortunately. It’s not a great feeling.
Sarah: It is interesting and maybe after this situation, as a cohort, we can advocate for Telehealth access with the data that we have collected, showing that these Deaf populations have access to services that never had before.
Melissa: Yes, definitely.
Sarah: Elisa, same question for you. For Walden Community Services, what differences have you experienced with all of the closures and how you work with our clients?
Elisa: For Walden Community Services it seems to be challenging on the staff to provide remote services, as we are used to going into the home to provide direct services and now, that setting has been removed from the equation. So instead, we are providing family therapy, and coordination services, through Zoom conference calls. Our therapeutic mentors, who are working with the kids, have been challenged by how to engage with the child through a screen since many kids don’t enjoy sitting there for an hour, interacting with an adult. Our therapeutic mentors have needed to be very creative in order to make that connection with their client. We have many families who are Deaf and the transition to Telehealth has been easier for them. Families who use spoken language are struggling because they like to have the provider in the home for support and help them respond with suggested techniques to a situation at that moment. Telehealth might be easier to respond to a situation quickly, but the clinician isn’t able to observe first hand what is happening in the environment and offer suggestions for adapting that environment. As far as school and remote learning, we have been trying to determine the best way to support parents because many of us also have children, So we understand the challenges of remote learning. We want to make sure we aren’t settling over the set boundaries, as Melissa mentioned, and we are making sure we recognize our own feelings, our own ability to say “is this about me?” Or “is this about the client?” It sometimes becomes tricky for us to navigate that. We need to recognize this is about my client and I need to support them. Or do we need to take a step back and say, this is about me and I need to find the right tools to take care of that for myself.
Sarah: It’s interesting, both of you just commented about this time, of course, being challenging for the clients but also being challenging for our clinicians as well. We are all experiencing this same pandemic and having to maintain those professional boundaries, which is such an interesting thought. I mostly have been focusing on the impact of the client but this makes me stop and think, of course we’re all human. Being a provider is an additional challenge, to continue to maintain those professional boundaries and keep your focus on providing services without burning out. Yes, Brittney go ahead.
Brittney: Sorry, I just wanted to add… I really appreciated Melissa and Elisa’s comments about our teams, our staff who provide services. For advocates, we have a different structure, where we provide 24/7 residential services in a group living environment. However, all of our employees are considered essential workers so they’re still going into these homes and interacting with the Deaf people that we support. So they’re still seeing some people in person and we still try to follow social distancing practices but fortunately, advocates was already ahead of the governor's announcements regarding safety policies. But our staff are struggling with the idea that people still need support, still need services, they need to have people in their homes every day and every night, but at the same time, we need to take care of ourselves. So staff do have concerns about their own personal safety right now and the risk of exposure for themselves and for their families. So there’s a definitely a feeling of uncertainty. How can I provide services but at the same time acknowledge my own limitations and my own needs? And as someone who provides support, both to my team and to the people we support, I do see the challenges that everyone is experiencing right now. It’s important to acknowledge and validate the feelings that our staff are struggling with and also do our best to keep morale up because as Melissa’s already mentioned, we’re all weathering the same storm right now. This is a shared traumatic experience in many ways. And I agree, I noticed that for people who have access to and are comfortable using technology, it can provide services remotely. And previously this state and insurance company policies always prevented this type of option. But now all of that is changed and we’re being given a lot more flexibility. And I hope that in the future, the community will continue to advocate together for this option to remain, even after the pandemic subsides.
Sarah: Absolutely. We will have some sort of constant societal shift as a result of this experience and I pray that’s a positive one, that continues to might in the right direction. And you brought up an interesting point about essential employees and their experience has been so different. They can’t take a break, they can’t go home and disconnect, they have to physically show up day in and day out. And balancing the risk between managing a family, and having to have extra care and caution when working with home care clients. That might be a worthwhile topic for future series. Something in regards or related to essential employees for the Deaf or working within group homes, or child/youth homes, because it’s the same situation but a really unique perspective. Elisa, you had made a comment previously about your work with children and families and trying to have that one on one work with the youth and of course, they’re of varied ages, and that can be a challenge. Maybe you could share one unique or creative way that somebody from your agency did to make a successful connection with a child that they might have been previously struggling to do.
Elisa: There’s so many good stories, let me try to think of one. It was a case that was just referred to us recently, maybe a few weeks ago or a month ago, and that child refused to engage with the clinician. Didn’t want to sit down with them, didn’t want to meet with them. So the clinician was able to meet with the mom but not the child. But then they found out that the child loves to film themselves and put those videos on YouTube. So, the clinician made a collage of all those different videos with themselves in a dinosaur costume. And making that video to the child and sending it to the child, they automatically had a connection. And it was really nice to have that technology and you know, the child said, “wow, that person really took time to edit this video and to make that video for me.” So it was really nice for them to have that connection.
Sarah: That’s a great story. I guess one benefit of Telehealth is having those natural times and opportunity to get creative. I doubt any of us here have a spare dinosaur costume in our office drawer, but being a home has given those clinicians the opportunity to get creative in the ways they connect to the clients. Moving on to the next question. In regards to mental health access for the Deaf community, in particular, what are your top concerns now, previously, and when it comes to coming back to the work? Anyone can feel free to comment.
Melissa: I guess my biggest concern is, again, related to the continued ability to provide Telehealth counseling, especially because we know that our reopening plan is going to require masks. And it’s going to require us to use specific types of masks and of course, we will fight and advocate for clear or see through masks when possible. But I already know that most of my Deaf clients will prefer to continue with Telehealth than have to come into the office with a mask or with my having a mask on. So, my concern is that the insurance company could potentially stop paying for counseling because they don’t want to continue to provide Telehealth. Or that our system won’t support it. Plus, the potential for not being able to use a clear mask, which makes it impossible to communicate fully in American Sign Language. It really does block a lot of the communication. And so those are two of my biggest concerns.
Sarah: And for our audience that might be watching this that are not Deaf or are new to Deaf services, can you explain why masks are important. And I don’t mean for preventing the spread of disease. I mean how does that impede the communication of sign language and why is that an important piece? Elisa?
Elisa: People don’t realize how much the Deaf community really depends on affect and that’s how we represent ourselves through the visual language of ASL, is our affect, our body language, our mouth movements. So a mask prevents all of those cues. For even clinicians, we are analyzing things through facial expressions and affect. So that mask is very much a barrier for our ability to analyze a situation, to see what type of mood the client is in or what type of affect the client has. A hearing person is able to listen to the tone of voice, but we really depend on those visual cues to make sure we are safe in our environment. We want to be able to predict what’s going to happen through a facial expression and if you take that away, we feel like safety might be gone in that moment.
Sarah: Going forward, how can we best connect with the Deaf community? All of you have said that you have received an increase in referrals but we know there still is a gap where we are not connected to each and every member of the Deaf community. How is it that we can get the word out that we have mental health services available? Maybe people had access to counseling before but there are new needs and new barriers. Any ideas on how we can partner with the Deaf community?
Melissa: Well, I do think that this type of panel is a way to start, or any type of messaging on social media where counselors, or mental health providers, are more visible, to show the benefits and the availability. Often, I hear comments like, “oh you don’t seem like a psychologist” or you know, it kind of throws off their perception of me. I take it as a compliment because to me that means that whatever their preconceived notions of a counselor or a psychologist was, I’ve broken that down a bit because preconceived ideas or concepts are not always positive. A lot of them come from TV or movies and a lot of people can feel very standoff-ish, not wanting to meet with a counselor for the first time because of that. So, I believe the more we become visible, the more we show ourselves as human, the more people will be willing to ask for help.
Elisa: I agree with Melissa. We are in the community to let them know that we are here for them but we do need to set up boundaries for the Deaf community. We have to show that we are professionals but sometimes when we’re showing that professionalism, we are missing the opportunity to really be involved with the community. And our training has taught us that we have to determine what is the correct level of engagement and involvement in the community because we don’t want to hurt those relationships that we are trying to build.
Brittney: I really appreciate both Melissa and Elisa’s comments. When I think about the Deaf community and the biggest challenge that we will face after the pandemic subsides, or when we start to see more and more places reopening, it’s that I worry about the community and not only the Deaf community, but all communities, expecting things to return to normal overnight. And I worry about us losing the compassion and understanding that we now have. A deeper, more compassionate understanding for one another has been one of the most beautiful things to come out of this entire experience and I’m so grateful for that. I don’t want us to lose that. I really hope to see that continue. And this pandemic has impacted both providers and the people we support and all of us are currently experiencing a loss of choice. And especially within the Deaf community where there are already so many barriers and oftentimes we feel stuck as though society makes many choices for us. So we’re seeing many people suffer through that, that deprivation of choice, feeling disempowered, unable to make any decisions for themselves. So when non-Deaf people start to work with Deaf individuals and work with Deaf providers, who work with the larger Deaf community, I hope we can continue to provide options, as many as possible. And I know that now the options now are quite limited compared to what we had before, but we still have options. And I noticed that amongst Deaf people, there are varied levels of understanding, of what masks are for for example, or what appropriate social distancing practices look like. And that’s ok. Sometimes people feel upset and confused when they see Deaf individuals not following the recommendations. But oftentimes, those individuals don’t understand why so it’s very important we continue to be compassionate. And have conversations as to why someone might feel resistant to following these rules. Who knows, maybe something is triggering a trauma response from a past experience. We have no way of knowing what someone else has gone through. So that curiously and that open mindedness, open heartedness, and continued dialogue is so important during this challenging time.
Sarah: I’m thinking about the story that Elisa shared earlier about her clinician getting creative to make that first connection with a child. I’m wondering if either of you have an example of how you connected with a client who had previous trauma and you started that trauma work or maybe helping a client to be accepting and understanding of the unpredictable world we’ve living in right now. Any stories or experiences you can share? Maybe something that was just helpful in your work. How to make that initial connection, how to build the rapport and really get the buy in from your clients during this time. Yes, that’s a tough question to think about!
Elisa: For me, it’s a shared experience through supervision or team meetings. The ability to look at an issue together as a group. The ability to recognize a problem or experience is there and how we chose to react. My choice is to respond one way and the family responds differently. Sometimes we’ll share experiences of a client going to a school meeting and the parents have decided to inform the school that they don’t want to do that. The clinician is empowered by the family’s experience. We can have some type of control in certain situations and that helps the clinician and the family have a shared experience. We learn to have control in some ways, through the client, and we realize we can manage our own experiences and our own reactions. It’s important for us to know we can control our responses and that can be a powerful experience.
Sarah: And that really nicely ties back to what we were just talking about. How the Deaf community has, in general, such a limitation on the options they have available to them and even more so now with so many new barriers arising. But those are things that we can’t control. Federal government is making decisions, our governor is making decisions that impact us. So, instead of focusing on that, focusing in on what is it that I can control. I can control my responses. I can control my emotional expression and that’s very empowering to look at it that way and re-frame it in that way. Melissa, did you want to add?
Melissa: Yes. I think that is a great tie in. There’s also two concepts from AA that are really helpful right now. The first is to recognize what we can control. So, if that environment or those other people are out of your control, then that’s not a good use of your energy. It’s a waste to worry or focus on those things. Instead, focusing on yourself, focusing on taking care of yourself in particular. And the second tenant is to take things one day at a time. So, I have found that - this is a challenge for myself. I look. back to mid-March when all of this was beginning and repeatedly I was trying to predict when this would stop. I would say ok, this will be settled by mid-April and then it became oh, it will be settled by mid-May. And that type of behavior wasn’t helpful. So recognizing that I needed to focus on one day at a time, realizing it’s impossible to truly predict what is going to happen or come next. So I think some of that reframing really helped me to accept, I can’t control what will happen in the future. I can’t predict when this will all go away. And that’s radical acceptance. So, living your life one day at a time. I found that those two tenants from AA, those two concepts have been helpful for myself as well as for my clients.
Sarah: One thing I see people commenting about is going back to “normal,” almost just waiting for coronavirus to eradicate itself overnight and going back to normal. But we all know, looking at the foreseeable future, there are so many unknowns. When and how? What normal will look like? If you could touch on that. Also, the three of you might not be what people picture as a psychologist, psychiatrist or a clinician. I’m not sure what people envision, maybe an old man with a beard and a yellow bow tie with glasses on his nose. I’m not sure what people picture but in talking with the three of you, it’s clear that your goal is to make those genuine connections with the clients and patients that you work with to provide support. So, it might help if you could expand upon what a typical appointment might look like with either of you. If I were to envision my first time appointment with you over Zoom. Maybe I’m connecting to talk about my concerns about coronavirus. What would that appointment look like? How would it start? Maybe you could shed some light so we can help people understand what that would look like and lessen any anxieties they might have about starting counseling. Go ahead Melissa.
Melissa: So I work in the outpatient environment, as a counselor, which means people will come to me sometimes once a week, sometimes once every two weeks, or sometimes once a month. Everything depends on what their actual needs are. Usually for the first appointment it is highly structured. It’s called the intake appointment and that means I have a litany of questions that I’m required to ask to try to get a fuller picture of my client. However, the client always has the right to say that they are not ready to discuss a specific topic or that they rather put off that discussion until we get to know each other a little more later. Because of course they’re meeting me for the first time. I’m a relative stranger and I don’t expect them to pour their heart out on the first appointment. So it’s really up to them how much they like to share in the beginning. After that initial intake appointment, regardless of how many times they’re coming to see me, I usually follow the client’s lead. Ask them what their goals are for the day. What it is that they would like to discuss or what would benefit them in that moment. And I find that especially those clients who are seeking out counseling related to trauma, there is a fear that the counselor may start to try to pull out more information or details to a story right off the bat. That’s now how it works. Most counselors, and myself included, will wait for their clients to become more comfortable with us and see where they lead us. We’ll wait until they’re ready to tell us what they need to say. And so, recognizing that a lot of therapists have different processes, it’s important to find a therapist that has a process that you’re comfortable with. But know that most therapists and counselors are not out there to manipulate you or control you. We’re just here, ready to go along on your journey with you. And it’s not us leading the charge, it’s truly the opposite.
Elisa: For Walden Community Services, we are a family based service so it’s a family based approach. And as Melissa mentioned, of course, the first appointment is an intake to gather all the necessary information from the insurance company. Then we try to develop a relationship with the family. How can we support their child to succeed? What is the family vision? We follow the goals set by the family. It’s not one size fits all. There is not one family that is the same as another family. So it’s important to know what they need and want for their own family since that could be very different from my family. We then help them determine what works for them and follow their wishes. We want to make sure we are working with the families and supporting them as best as possible. We never take the lead on the discussion. We are not experts on who they are. We are here to support them. If they want tools to help them succeed, we find them and share them. We provide them resources so it’s all about their family and their vision and what they need. We are not going to determine who they will be. It’s their choice to decide what they want to do. No one else can decide for them.
Brittney: At Advocates, I work in several different settings. We do have traditional counseling and therapy, similar to what Melissa and Elisa have described. And we also have, for example, if a Deaf person enters a group living environment, or GLE, it means that we receive referrals from the state. So we’ll do an intake and that intake process is more person centered. So we really work closely with that individual who wants services. But there are also times where that individual doesn’t want services but instead the state has required this of them. So in that case, we meet with them and at that time try to learn more about where that person is coming from. For many people, this might be their very first opportunity to actually share their opinions and make it known what they want for themselves. So this means sometimes that part of the process needs a little bit more structure, where we focus on listening to the individual, educating them about our services, explaining what we can do to support them while finding out what that person wants for themselves. We then try to get creative in how we can work together. So that’s for our group living environments. We do also run a crisis stabilization program for Deaf adults who live in Massachusetts. It’s a unprogram, the first of its kind. And it was established about 6 years ago now. We’re soon celebrating our 7th birthday. So this is a program where someone can stay for a short period of time. Usually around 2 weeks, but depending upon the situation it could be longer. Sometimes a person will come voluntarily, during a crisis, other times this is a step down from a hospitalization or sometimes it’s used to avoid a hospital level of care. Or maybe an individual wants to stay within their own home and in that case, they can reach out to us and we can come to meet them in person. Of course, now everything is done remotely through video conferencing but if that person does not have the ability to connect with us online, then we can meet up in person outside and keeping appropriate distances from one another. We really try to be creative with this and everything is guided the entire time by the person requesting support. Our philosophy is that a person knows everything within themselves and that we’re simply there to help them access whatever they might need to live a more peaceful and enjoyable life. And what that means and what that looks like is going to be different for each person, so we always try to tailor our services to whatever that person wants while still considering safety, compromise, fairness, and the goal of living a healthy life.
Sarah: I’m curious how is it that the three of you work together in the services you provide? I’m still kind of new to Massachusetts. I’ve only been here for less than two years but it’s important to recognize Massachusetts has much more to offer as far as mental health to the Deaf community compared to other states. But even still so, it’s still so limited. The three of you represent maybe a total of four or five agencies that provide mental health. So I’m wondering if you could speak to how is it that a client would get connected to you? Must their doctor make a referral? Can they reach out to you directly? Can you make referrals to each other?
Elisa: In the past, I have made referrals to Melissa for some of our clients. We were able to connect her with the parents in order to set up those services. Also with Brittney, I have referred a few kids who have aged out of our program. They really enjoy the Deaf Respite program. It’s been a savior for many of our young adult clients because they don’t always have a safe space at home so they are able to use the Deaf Respite program. So we refer to both programs.
Melissa: We also moderate a listserv and it’s called “Mass Deaf Care.” There’s another well known listserv in Massachusetts called “Mass Deaf Terp” but this one we set up called “Mass Deaf Care” and there’s about 40-50 Deaf or signing counselors, mental health professionals on this listserv. And we use it as an email group for referrals or to find resources. It’s a little bit more formal than just word of mouth but it is still a community networking approach. That’s often how we talk with other agencies and work out referrals.
Sarah: And the three of you have different approaches to the services you provide. As Brittney mentioned, they have step down, group home or respite service available. Walden Community Services where Elisa works with the family. Melissa, more one on one work. So that’s a nice representation of balanced services. But actually, Brittney did I see your hand raised?
Brittney: Yes. The referrals for GLE, or group homes, often need to go through the state, which can be challenging for people who have recently moved to Massachusetts. So if we see a person who is in need of services, we often will recommend Deaf Respite services because there are no requirements on how long an individual must have lived in the state. They are required to have an address but there’s some flexibility with that. But it really depends on the situation. Some people really have no other option so we try to find ways for them to access support because they really should not experience a barrier to services for that reason. So if someone does come to Deaf Respite, we’re funded by DMH, the Department of Mental Health, but it is not a requirement for that person to have DMH services. However, we work closely with DMH which means they can help people to take that first step and just get their foot in the door should they want more permanent services. If they don't need permanent services, that’s fine too. Or if they don't want more services, that’s also ok. But they have options and we can work with that person to make appropriate referrals or connect them with services in their local community. Fortunately, Massachusetts has a strong Deaf community which makes that process of reaching out and connecting with local services much more comfortable. For people who have just moved to Massachusetts from another state, it might take them some time to learn what’s available out there.
Sarah: We know the Deaf community is very small, very connected to each other and often everyone knows each other or knows someone who knows someone. So how do you maintain confidentiality in your work? Often, Deaf people say well, I have conflicting feelings or needs and I might need to sit down with a counselor but I’m paranoid, or concerned, that my name will get out there. Or I’ll have to access counseling with an interpreter, so a third party will be in the room. There might not be clarity. Will I be judged, etc? How do you address confidentiality in your work and how do you support your clients?
Elisa: For Walden Community Services, obviously we work in the Deaf community so that is sometimes difficult. If we introduce families, we let them know that we will not share information. it’s completely up to them what they decide to share or not. For myself, I tell my clients, if I see you in the street or meet them at an event in the Deaf community, how would you like me to respond to you? I let them decide. Should I say hello or should I pretend I don’t know you? It gives the power to them as to how I should approach them in public. I want them to be comfortable. I am part of the Deaf community and we might see our clients at events. I want to follow their lead and they’re usually ok with that. They kind of like the idea that they can tell me what to do in that situation. I think one, maybe, misconception or assumption about Deaf professionals is that people are always surprised when we are able to keep things to ourselves and put those discussions aside at the end of the day. It’s not our story to share. We need to acknowledge that it’s their story and it’s not mine to give. It’s their story, not mine.
Melissa: For one on one counseling, it’s exactly as Elisa said. This past Fall, we’ve also set up our first Deaf counseling group. It’s called “Deaf Women’s Support Group” and it’s still small at the moment. But we were really thoughtful about how to approach confidentiality before setting this group up. So every member has to sign a confidentiality agreement. If there is any breach in confidentiality, that means that that member will be asked to leave the group immediately. It’s basically a no tolerance policy that we’ve set up in regards to confidentiality because the Deaf community is so small. And it’s a sense of shared information, shared understanding, and mutual respect that we have to keep intact, otherwise this type of group wouldn’t work. What’s the point of getting together every week if there’s no trusting each other? So it comes from a place of mutual respect. And from a therapeutic perspective, we have to be very clear about a no tolerance policy around breaking confidentiality.
Brittney: It’s hard to explain… so I think about our services and we’re community based adult services. Some people permanently live together with roommates in a group home, others make use of Deaf Respite or short term care. And if you come to Deaf Respite, you never know who will be there. We don’t share names ahead of time. But in our conversations, we focus on the idea that the providers will not share your story. Our staff will maintain confidentiality. But we always remind people that there’s a real possibility that other individuals in the program might not be as respectful. That we can’t promise 100% confidentiality at all times. But we do continue to have conversations together, as a community, where we talk about why sharing another person's story is hurtful and how doing so impacts us in the Deaf community and at Deaf Respite. If people’s information is not kept private at Deaf Respite, and word gets out, people might feel reluctant to use our services in the future. That idea of community ownership of these types of resources, and of course we can’t control what people using our services will do, but it’s an important conversation about how we as a community can come to an agreement about how we persevere these safe spaces so they can continue to be used. Because we want to see Deaf Respite continue to serve our community for many, many more years. In our group living environments, or group homes, it’s a similar conversation. We try to figure out how to best provide privacy because this is that person’s permanent home. So, for example, suppose we need to have a team meeting. We always offer the option of meeting in a neutral location, such as maybe going to the office for a more formal meeting, or we also offer the option of meeting at the house. It’s important to give the individual this choice and to ask them which space would make them feel the most safe. Another thing to mention is suppose someone comes to the door and a staff person doesn’t recognize them at one of the houses, we can’t answer any questions about who lives at that residence, not even for the police. That information must be kept entirely confidential. Instead, our staff can approach the person that lives there and let them know that there is someone at the door and explain what their options are. Whether or not they’d like to answer the door is entirely up to them and we do not share the fact that you live there. That conversation is important to respect their privacy. It’s their personal information, it’s their life. And the Deaf community is incredibly small. But there’s also a history of people using interpreters or other individuals to gain more information about Deaf people’s lives. And we work really hard to minimize the possibility of that. We want people that we support to feel safe and if people don’t feel safe, they can’t heal. We all need to feel safe in order to continue to do that healing work.
Sarah: What’s interesting is all of the services you provide are in different environments. So, one on one therapy, of course, is completely confidential. The family work, of course the information stays within the family. And for group living, those residents are physically seeing each other so you can’t not see what the residents are accessing as far as services. But one common theme that you all mentioned is that it is up to the client as far as what they disclose. That confidentiality and mutual respect is such an empowering thing to know that the counseling department or the individual is never going to decide for them, which is nice. We have talked about how there are gaps in services for the Deaf, gaps in access, of course, only a handful of services for the Deaf. Whereas the majority hearing population has endless number of services available to them. So, thinking about additional changes to our services. Maybe providing Telehealth services going forward. Providing grief group services. Any other ideas that you have come up with to access a balance for mental health services within the Deaf community?
Elisa: I think one of our biggest frustrations for Walden Community Services is a lack of access for emergency services for youth. CBAT - don’t ask me to say what that acronym is - and MCI, mobile crisis intervention, they’re not accessible for kids who are Deaf. There have been many situations where kids go to an emergency room and they have no services for a week or two. Then they are discharged since there’s no available beds in a treatment program for them. They don't want to take responsibility and hire an interpreter. So there’s really nothing available for a child who is under 18 and needs that level of care. The kids really need a respite or a CBAT or a bed in the star program where they can get 24/7, intestine therapy to help them stabilize before they go home. But those programs are not accessible. That’s our biggest concern and challenge. How do we approach that now and after the coronavirus? We actually had one child that went to the ER a few times this month and their mother was not allowed to go into the Emergency Room with them due to COVID-19. The child went in alone and they’re only 13 years old. Where are those emergency services for our Deaf children? I would love to see more work done for access to these services.
Sarah: Help me understand the difference if we were to have a 13 year old that was not Deaf and had an emergency and was brought to the ER compared to a Deaf 13 year old being brought to the ER. What are those differences?
Elisa: There is an immediate language access for a child who is not Deaf with the doctors and providers. For a child who is Deaf, especially for a 13 year old, there are many places that are not equipped to care for them. So when they do arrive, there is no communication or language access in place. There are some beds available for Deaf patients but certainly not as many as the general public. Access to a program is more readily available for a hearing child than a Deaf child, since interpreters are not needed. They can go to many different agencies for services. They have other resources since language isn’t a barrier. Deaf patients are very limited with their options for services. Some places are allowed to say no to accepting Deaf patients. They don’t want to take responsibility for needing to provide services, which I do understand but this is a barrier for a child who needs access and treatment. Due to the lack of access for a Deaf child, they end up staying in the emergency room for a week or two without services. That's actually against the law. They should not be in the ER for more than 48 hours. We’ve seen this happen with several children over the past few years.
Sarah: Meaning that 13 year old was brought to the ER and then was left there for weeks without services. They were already in crisis, they were already having a traumatic experience and then they were left there without services for weeks. Have you had other experiences of severe crisis with other Deaf clients where you have noticed gaps?
Melissa: Historically, I think the biggest gap in resources, I’d say here in Massachusetts as well as nationwide, is addiction treatment. And especially inpatient treatment for those clients and patients who need to detox. So, until recently, the US did have 1 inpatient treatment program for addiction and that was in Massachusetts. But my understanding is that it recently closed due to budget cuts, which is pretty awful. So, here in Massachusetts, the problem is people need detox treatment right away. There’s no time to wait to secure an interpreter to advocate for services or to advocate for communication access. It’s something that needs to happen right away, with or without those things. So I think it’s a big problem and it’s been a problem, I’ll recognize that. But my biggest concern going forward is right now, we are in the middle of this COVID-19 pandemic. The amount of time that people are isolating have led to a very strong drinking culture. And maybe you’ve noticed on your Facebook or Instagram feeds, that people are posting more and more about day drinking, or whatever they may be doing. And I understand, I totally get that there is a loss of structure. There is increased boredom, a loss of recreational and leisure activities and all of this is leading us to drink. I get it. But once this pandemic settles, my question will be will we see an increase in Deaf and non-Deaf patients seeking out detox treatment and addiction treatment? Those patients who need inpatient detox services, they won’t be available.
Brittney: I had the exact same thought as Melissa. Substance use treatment and dual diagnosis treatment, neither of these are available for the Deaf community. Right now what we’ve been experiencing and seeing is people going through Deaf Respite, in addition to seeking out community services. But many Deaf people are feeling stuck. There are huge barriers to them receiving services. I do know of one person who has been waiting for services for about 4 years now. They finally were able to access a non-Deaf program but it took a lot of fighting and a lot of advocating for them to provide an ASL interpreter. And a lot of educating them about Deaf people and Deaf culture, setting up a videophone for example. And after the organization confirmed they finally installed the VP, we found later that they had actually set up a TTY. So it’s been a constant battle and it’s been so confusing for this Deaf person and English is not their first language. So using a TTY and typing in English would not even be an option for this person. The barriers experienced by the Deaf community are just overwhelming. There’s a little bit more access for Deaf men in Massachusetts. There’s a neighboring agency in Rhode Island that supports a mix of Deaf and non-Deaf individuals but this program focuses on men. There are no services out there designed specifically for Deaf women throughout all of New England. You might remember that one program in Minnesota and that was a huge loss for the Deaf community. Where else can we go? It’s very concerning. I’ve been involved in some work grant funding and we’re hoping to look for ways where we can set something up but it’s very challenging. The way the Deaf community uses services look very different than non-deaf communities use services. So it’s a big challenge to educate people on the federal level about why we still need funding. But the use of that funding, it might look different than what they might expect. So this will be an ongoing project where we continue to lobby and continue to have conversations with our representatives in order to secure funds to support the Deaf community.
Sarah: Just want to make sure we’re all on the same page as far as the terminology we’re using. When you talked about detox, of course you’re talking about stopping drugs and alcohol. And when you say dual diagnosis, would you mind expanding upon what you mean? By that, Brittney, I think you used that in your explanation.
Brittney: Yes, thank you. Dual diagnosis means a person struggles with both addiction and a mental health diagnosis at the same time. And these two diagnoses can impact one another. For example, if someone struggles with mental health, then the probability that they will experience a relapse and use again is very high. And if someone is struggling with addiction, this can also have an impact on their mental health state. So this requires a very specialized level of knowledge, training, and experience in addition to having knowledge about the Deaf community. And I’m sure Melissa can speak to this as well.
Sarah: And talking about how dual diagnosis can influence each other, mental health can influence alcoholism and vice versa. So noticing a gap in those kinds of services, of course, is a huge impact on the community. And something worth looking into further. Yes, Brittney?
Brittney: Yes, it’s impacting children as well. Most people’s first experience with alcohol or drugs or other substances is at a very young age. Sometimes this happens as early as 7 years old and the risk of addiction goes up depending on how early someone’s first exposure is to using different substances. And it’s a big struggle within the Deaf community. There are no resources out there focusing on different age groups because we know that some people start using very early in life. We need more access to both detox care, continued care and early preventative approaches as well.
Melissa: Very true. Well, like both of you already mentioned, one influences the other. So I often think about addiction itself as that person’s coping mechanism. It could be that depression had led this person to drink and so that alcohol, in that moment, is this person's way to cope with and manage getting through life. Is it the healthiest coping skill? Maybe not. And hopefully over time we’d be able to replace it with something that is more healthy. But we really want to look at what that drug or alcohol or self injurious behavior is serving as a function to that person. Once we know what the function is, we have better chances of replacing the behavior with a healthier one to serve the same function.
Sarah: if you could provide a word of advice, or last thought, to share both to the Deaf community members, if anyone is considering asking for therapeutic services, what would you tell them? And what advice would you give to other mental health care providers or tips to colleagues in the field?
Melissa: So, for those Deaf people who may be considering giving counseling a try, my word of advice is to go for it! It’s always worth a try. And I’d say try 3, 4 or 5 sessions and if you feel that it’s not going well, you have every right to back out of that and try someone new. Just because you chose one counselor in the beginning, doesn’t automatically mean you’re committed to that person. You can always go out and find somebody else or shop around, if you were. Because it could be that the first counselor that you find is not a good fit for you. That often happens. So meeting a few different counselors, giving yourself options before you settle into a long term relationship is always helpful. So my advice is to just try and you don't have to continue with this one person if it’s not working for you. As far as advice to other counselors, my advice would be to also get counseling. Often we can be resistant to the idea of getting counseling, perpetuating that myth of it meaning we have a weakness or something along those lines. But we should get counseling just as everybody else. We’re human. And I know we can be defensive and I know it can be scary, but I guess it goes back to my first piece of advice to just try. Find someone who is a good fit and just give it a try because why not?
Elisa: One thing I often hear from the Deaf community is that insurances won’t pay or cover counseling and that is a fear for them. But offices will find a way to have the insurance covered and support the patient. There are people who will be able to help coordinate services as there is a system in place to help them determine insurance benefits and pay for counseling. I want to inform the Deaf community that we are here to help them navigate the system. We can refer them to someone who accepts their insurance but certainly there is that fear in the Deaf community. Who is going to pay for therapy? But we are there to help them with those arrangements. For mental health providers, I would say it’s important to be authentic. Be honest with yourself, which is sometimes a challenge even for me. To recognize my feelings are just as important. We don’t want to fake it until we make it. We need to be honest about our own experiences. We need to lean on each other and find resources. Be authentic about your experiences.
Brittney: I love your comments, both Melissa and Elisa, I think said it beautifully. I’d also like to emphasize that for Deaf Respite, you do not need to have DMH services. You don’t need to pay anything out of pocket and you’re not required to use insurance. If you’re concerned about who will complete the referral paperwork, please don't worry about that. Just give us a call and you can speak with one of our clinicians and they will help walk you through the process and work everything out. If you’re feeling you’d like to take it slow and just have a conversation to learn more about our services, that’s ok too. You’re always welcome to reach out to us. There’s never an expectation that you have to move forward with services after you inquire about them. This will always be your decision. For providers, I would encourage you to stay curious and compassionate. And I can’t recommend that enough. Every person has a way of expressing themselves, and it’s so important that we honor that and we listen to what they choose to share with us. Their stories are real and their feelings are valid. Don’t ever minimize that. If someone mentions something that seems small, always remember that it could be incredibly deep and meaningful for them. So please stay curious, keep an open mind and explore together with that person who wants services.
Sarah: I think one great thing about the Deaf community, as far as accessing mental health and getting that support, is that we are a small enough community, if anyone is new to the system, new to the area, or considering counseling for the first time, we have a great network. We can reach out to each other. Ask for free advice, if you will. Do that networking and get support from your community. We can refer one another to different services, which is so nice. It’s almost like we have a big safety net in this community. You know, usually when you get on an airplane, and they’re explaining the safety parameters, putting on your seatbelt, if a mask were to drop down, they always say put your mask on yourself first before you help others. And I think it’s important for providers, caretakers and parents to remember in a time like this, you have to be able to take care of yourself and be in a good place, especially now. And I know we’ve brought up a lot of different topics. This is just the beginning of a long, needed discussion. We haven’t talked about grief, addiction, emergency services, and how they impact the Deaf community so I look forward to future dialogues. And at the end of this presentation all of your contact information will be shared for people to reach out at any time, Any last closing remarks? I want to thank you, again, thank you so much for your time, your commitment to this community and the opportunity to start this dialogue and really start some important discussions out in the community. Because we are truly all in this together. Thank you so much. I appreciate your time and we’ll see you around soon. Take care!
[Video ends with end screen graphics. On-screen text reads: Learn more about Advocates. www.advocates.org/services/deaf-services. Learn more about Deaf Yes! Follow Deaf Yes! On Facebook. Learn more about Walden Community Services. Visit www.tlcdeaf.org/wcs. Celebrating 50 years: The Learning Center for the Deaf. Visit us at www.tlcdeaf.org. Video ends.]