Equitable Access to Behavioral Health Treatment for the Bleeding Disorders Community
for joining us this week as always we’re going to give it just a minute to allow the room to fill up before we go ahead and get started hello hello thank you all for joining us this week I’m gonna just take some time before we go ahead and kick off the webinar um [Music] give it just one more minute all righty good afternoon everyone thank you for joining us once again for our weekly Wednesday webinar series today’s webinar is on Equitable access to behavioral health treatment for the bleeding disorders Community my name is Austin Martha and I am the moderator of this series at any point during the webinar if you would like to ask a question please use the Q a feature at the bottom of your screen and if you’re joining us from one of our social media streaming platforms you can go ahead and enter your comment it’s your questions in the comments excuse me we have staff members monitoring these questions which we will pose to our speakers after the presentation this webinar is being recorded and will be available to the community beginning on Friday March 3rd I am joined today by an amazing team we have Kate bazinski chair of the bleeding disorder substance use and Mental Health Access coalition Jacqueline Bacardi a licensed clinical social worker at the Yale hemophilia Treatment Center nhf Senior policy and Healthcare analyst Marla Feinstein and Lucy Ramirez a social worker at The Rush University Medical Center HTC thank you all for taking the time to join us today I will go ahead and turn it over to you to get your presentation started great thank you so much awesome and thank you to nhf for hosting us today this is um really exciting we’re thrilled to be here so um today’s goals really is to um we have four goals first of all to raise awareness um among the bleeding disorder Community about the barriers to residential and inpatient behavioral health treatment facilities for people living with bleeding disorders um to share resources to facilitate access to treatment and to educate the community on what to do in the event of a denial and to share more about um our Coalition and and to share some opportunities to get involved because we would love to to have your involvement um Austin did a fantastic job of introducing our crew so I won’t go into it any further but I I am Kate vazinski so I am the chair and I’ll start with a little background of the bleeding disorder substance use and Mental Health Access coalition so um this all began about a year ago when a young man named Derek um he had severe hemophilia and a history of substance use in mental health conditions and he hit rock bottom and so he went to his hemophilia Treatment Center nurse who had worked with him for his whole life and said I need help I am ready for treatment um and she called all of the residential substance use disorder facilities in the area and no one would take um a person with a bleeding disorder and so without access to appropriate treatment Derek unfortunately went home he overdosed and he died and so when that happened Jen Feldman the nurse um at the treatment center came to the the New England hemophilia association and said how can we stop this from ever happening again you know I and um the New England hemophilia association reached out to nhf and HFA and we began the bleeding disorder substance use and Mental Health Access coalition and we are a diverse stakeholder Coalition with representatives from nhf HFA hemophilia Treatment Center providers like Jackie and Lucy we also have a number of local chapters involved in particular North Carolina and um the count the hemophilia Council of California as well as community members and our mission is to advocate for access to appropriate substance use in mental health treatment facilities for all individuals with bleeding disorders but really the barriers to access have been um in regards to the inpatient and residential treatment facilities so that is where we are focusing our energy on ensuring access and why does this work matter well we believe that access to residential treatment is a Health Equity issue we believe that every person regardless of their presence the you know regardless of whether they have a bleeding disorder whether they can clot what medication they use what state they live in every person should have access to the mental health and substance use disorder treatment that they need and so I will turn this over to Marla to share what we did first okay so thank you Kate um so what we did first was a national survey right we wanted to determine if this was something unique with respect to Derek or Massachusetts or whatever um and we did a national sorry I was like wait why is it changing um so we did a national survey of all providers when I say all providers I mean it was sent to All HCC providers including social workers nurses physical therapists and what we found was was that we got we did get a significant response rate from the provider group right the HTC responses of those that responded for uh 42 42 responded but of those included 59 htcs representing the 42 percent of the U.S there for reference there’s a a total of roughly 141 federally recognized hemophilia treatment centers across the country of those that responded we had a wide range as I mentioned of Provider types including nurses social workers hematologists and physical therapists and the nice thing about having all those different provider groups respond to is that it gave us a really robust 360 view of the provider perspective from the hkc’s next slide please and unfortunately what we learned is that 83 of those who responded to uh the survey who reported uh uh who attempted to refer a patient reported denials unfortunately meaning that they were not able to place their patient in a residential treatment facilities of the right there was also 70 which had success but that’s not that’s not a significant amount right we’re focusing more so on the 83 percent who received denials next slide please and this we’ve what we found is that they came from all across the country this was not a uniquely Massachusetts problem that was not a unique HTC issue it was not a pediatric issue what we said what we found was that 17 states of the reported denials we didn’t um have uh we have three non-servied denial reports meaning since we were since we did the survey about a year ago we found that you know there’s been significantly more um numbers of people that are reporting denials we you know and we didn’t get respondents from 21 states and we only had 11 states where there were no reported denials so what does that mean it means that these states irrespective of where they’re located um whether it’s Urban or rural or region of the country they’re all reporting denials next slide please what we also found is that we wanted to know is this just Derek because he was um 20 years old was it pediatric and adult okay and what we found was that these denials impacted both pediatric and adult populations and as you can see here on this slide on the left hand side what you’ll see are Pediatric and on the right is adult and what we did is we categorized them based on whether or not they had a general for a substance use disorder facility a mental health facility or both and what we saw was that they were both impedes in adults and also for both types of facilities meaning both mental health and substance use disorder next slide please and they as I mentioned earlier this just breaks it down a little bit more in terms of who was exactly being denied whether it was pediatric or adults and what we saw is that it’s it’s irrespective of pediatric or adult type of uh place in the country state of residence whatever it is is that this seems to be a large much broader problem than we had initially than we had known prior to this study and now I’m going to toss it over to Lucy thank you Marla so you know it’s important that we did do the survey and established a scope of of the problem because we were able to answer three important questions one is access to Residential Treatment a problem and that was a definitive yes and was this um related to just one geographic area or was it more of a larger scope and there was definitely a national scope that was found out which I think you can see from the map that we’ve shown it was across the country from the east coast to the West Coast just about in every region and are there certain populations or facility types that are more susceptible to the denial issues and again clearly by looking about across the different populations that are served by hdcs they were reporting that it was happening for both the adult and the Pediatric populations and it included both people seeking substance use treatment as well as mental health facilities and I think this is an important point to make is that it is such a large National scope because coming from the provider side working for many years on the inpatient side and trying to find facility pacement page placements for your patients and running into barriers a lot of times you’ll say oh well it might just just be the problem with our area or the problem with this particular patient or maybe the problem was with me I just don’t know what to do and to give up but it was important to know that no this is happening everywhere and um if you want to hit the next Point um Kate on the slide that it showed us that it can conclude that this is a problem that is National in scope and it requires a national response which means that we are fortunately part of a community that has a very strong advocacy um in all areas of the country for our patient population and that we could draw on these resources to act on this problem next slide please so um and once we had gathered this information about from the HCC providers about the denials we decided that it was important to interview the providers that had responded to the survey and to discuss what were the causes for the nut Isles to care and importantly we considered not where what were the things that were causing denials but also the things that were helpful but looking at the issues that were brought out in these interviews that were conducted after the survey we found that there were five different areas that denial of denial categories that the respondents gave us the first area was infusions most of these facilities um do not are not familiar with giving IV medication infusions and that’s just not for bleeding disorders that’s for a lot of different medical conditions that require medications that need to be given with a needle and directly accessed into a vein they also said that their staff did not have the expertise to monitor hemophilia medications they did not know what would be an unusual response to the medication or what was an expected response and they just did not have the ability to manage the infusions in that particular facility the other concern that was brought up was the presence of needles on um the in the behavioral health residential facilities safety is often a concern for the staff and so for the substance use facilities what the concern was was would this be a way for the patients to perhaps abuse drugs while they were in the center if they were looking for substance abuse treatment and would it allow them to do IV drug use on in the facility and or would it be something that um could potentially be harmful if they used it for other means and um concerns about and a lot of acute psychiatric treatment facilities they don’t even allow the residents there to have regular um Cutlery like knives forks and spoons just because of the risk of like they could possibly be used as a weapon or for self-injury so that was the other concern another issue that was brought up was the kefir and medical complexity a lot of patients with bleeding disorders are used to running into providers and other professionals who are just not familiar with bleeding disorders or rare medical conditions and the fear that the condition would be too complex to manage and that they would not know what to do for instance if the patient started having a spontaneous bleed on the Union on the unit and also would the treatments the going through the withdrawal the detox part of the treatment would that lead to con would that cause the patient to bleed and then what would they do or you know if the patient was on the psychiatric unit and had to have a hold would that mean that they would have to they would not be able to protect the patient or the staff in the same way because they had to avoid touching them because they might cause a plea and then insurance is always a big issue whenever you’re doing a transfer of care to an inpatient residential facility um whenever they’re looking at the potential cost of having the patient on the unit they’re often looking at what is the cost of the treatment plan what’s what is the medication cost going to be for the facility and um will this not will this be covered by the regular source that the patient is able to use to access the factor or will there be the issue of them being impatient and not being able to get it and um will the insurance also will there be just a regular co-pay just in general for the treatment that um the patient or the facility would not be able to get around in order to make this admission happen and then the other big issue is that many of these types of facilities there are basically two types of facilities that provide mental health treatment and substance use treatment some are connected to an acute Medical Hospital as our hospital has both an acute psychiatric treatment facility as well as one for patients that are detoxing and going through substance abuse treatment but most many medical centers don’t have that or many psychiatric units and substance use treatments don’t have a connection to a major medical facility as well or obviously one that has a hemophilia treatment program associated with it so freestanding programs are not used to working with specialty medical pharmacies like are often involved in the care of our patients so they did not have a way to access factors through the normal Pharmacy channels that they’re used to next slide so after we um found these five common areas that were often coming up for denials we were able to develop five potential areas for policy intervention and um and it was all meant to Target how do we get around the treatment facility denials and the areas that um we looked at were where are these policies coming from and for the substance use treatment facilities we had decided that that was something we were going to look at first just because there was a national agency that was involved in developing their criteria for most most substance use treatment facilities and that’s the American Society of addiction medicine known as Assam so understanding what the their policies were and how the facilities were interpreting these policies was important um the other area that um we needed we decided to look at was the fears around the medical complexities the infusions this was something that I think we felt in the community most confident that we could deal with that we could provide the education that was necessary to help with that so that was another area that we were looking at and also this issue of discrimination and access for patients with bleeding disorders and other complex medical issues how do we get around these um often unspoken regulations that exist on these type of facilities you know figuring out why they exist and whether or not they coincide with the law in regards to providing equal access to patients and also considering how do we deal with the insurance issues could there be in some way that we were able to address the issue for patients needing access for nursing home facilities could this there be some way that this could also be used to deal with these freestanding these freestanding institutions that we’re servicing our patients and again looking more getting into how do we actually work around the issue of access to medications and can making some connections with the specialty pharmacies and talking with both sides to get some sort of agreements arranged so the patients could be able to continue to use their Factor while they were in in the hospital next slide please So based on these areas of policy we were able to develop an advocacy roadmap and as I had mentioned before looking at assam’s criteria and communicate how to change that and dealing with um these fears we thought it was important to provide tools for HTC staff and other medical providers to understand what to do if they encounter barriers to getting their patients the type of care that they need in the in these facilities and dealing with um some of the resistance that we were getting and making them understand what in fact is a stable patient with the bleeding disorder because stability is an issue that came up over and over again for the substance use of mental health facilities and looking at how do we deal with the con the current federal and state regulations that surround admissions for mental health and substance use treatments and what can we do legally to address some of these regulations and perhaps make sure that they’re either being looked at and reconsidered or enforced in the case that they’re going to help our patients and also continue along with trying to as I mentioned with the nursing homes trying to use that and trying to continue to gather gather the data that was necessary in order to work with the sniffs and to change those policies and um as far as the access to the medications that was something that we still continue to work on we’re still gathering information from other providers from the pharmacies that we work with to figure out what are the issues Insurance wise and what can we do to facilitate these connections with this with the behavioral health facilities that we’re trying to get our patients in next slide so Jackie is going to talk about the next section of our presentation thank you Lucy thanks Kate so the first step on our advocacy road map was clarifying and changing the national substance use disorder treatment criteria next slide Kate thanks nationally substance use treatment programs utilize a criteria from the American Society of addiction medicine or ASM for admission the asym criteria provides levels of care for substance use treatment after reviewing the language we realized that patients with bleeding disorders could access outpatient or hospital-based treatment although being denied from residential or inpatient treatment or asum level of three care even though they were medically stable and appropriate for this level of treatment so what we did was we spoke with the editor-in-chief of ASM who informed us that they were in the process of revising their fourth edition criteria and they requested that the Coalition provide them with specific language to be inclusive for patients with bleeding disorders for all levels of care next slide please after compiling the information for ISM we received masek endorsement of the work the Coalition created the effect provided a letter of support as you can see on the power appoint from Dr Amy Dunn and we included that in our submission to ASM just to have that scientific um you know support which we thought was really important next slide so BD sumax advocacy is working this is really wonderful we heard back from Asim and learned that they Incorporated the inclusive language we provided in the draft fourth edition criteria here are two quotes and the second one truly encompasses what our Coalition was advocate advocating for and I’m going to read it if a condition can be self-managed by the patient for example a blood clotting disorder or managed effectively by an external provider it should not be used as a reason for exclusion from any level of care um which is incredible so we are hopeful that once the fourth edition is published in the fall it’s hopefully going to be published in October we will have more success in referring patients with bleeding disorders to residential treatment next slide so next on our advocacy road map we took the information that we learned from our national survey and as Lucy mentioned we completed interviews with the providers who received both denials and successes we thought understanding not just from the people who received the dial but also from the people who were successful what did they do differently um to get their patient into a substance use treatment program a common theme as Lucy had mentioned Was Fear related to the medical complexity of bleeding disorders and needles next slide so we created a toolkit for providers called the best practices for accessing residential substance use disorder treatment for individuals with bleeding disorders next slide thank you the toolkit offers a few considerations including determining the appropriate level of care for example does this patient actually need residential placement or can they attend an outpatient program to work on their recovery preparing the patient for the call with the residential substance use Facility by encouraging the patient to discuss their substance use disorder as their primary diagnosis and that they are ready for Change and Recovery the provider call with the facility which stresses that their patient has a stable medical condition and they are independent in managing their care and also have the support of the HTC if as needed and lastly what to do in the event of a denial next slide we created a letter that the HTC provider or really any provider can give to the facility regarding the stability of the patient and we also created basically like a bleeding disorder 101 for facilities that they can refer to to really understand you know what a bleeding disorder is um and how they can you know work with somebody with a bleeding disorder in their facility this these two documents um we received mesack endorsement for both and also for the toolkit um just as a side note I actually recently used the toolkit last week for one of my patients my patient was denied on getting into a behavioral health inpatient residential program and I referred back to the toolkit that we created and I went through the steps that we put into the toolkit and eventually our patient was accepted into the facility so we know that the toolkit Works um as evidenced by me using it last week so that’s that’s really exciting um you know that all of the work that the Coalition has done in the past year is actually working next slide so we wanted to take some time to really go over what I was talking about in the toolkit you know what to do in the event of a facility denial um I know there’s probably a lot of um community members on the call or individuals with bleeding disorders family members and we really wanted to you know talk to you specifically about if you are in this situation what should you do um what can you do and the first thing is don’t give up although denial although denial statistics can be a little scary to see at that 83 percent people with bleeding disorders can access behavioral health treatment which was evidenced by my patient last week it just makes it might take longer time and that’s why you have this coalition to work with your provider on that so the second point is pull your provider and suggest that they reach out to DD sumac as you can see we have Marlo’s number we have Mark’s number and we have Kate’s number have your provider call somebody from the coalition ask the referring provider to have the facility give a reason or explanation for the denial sometimes if you’re in this situation you could be in the hospital or an emergency room so the referring provider might not be your hemophilia Treatment Center or your hematologist so make sure that you ask that individual um who you know was making the referrals um ask them to have the facility given explanation because maybe we can explain that as the hemophilia Treatment Center or your hematologist can give them more assurances around bleeding disorders also suggest that your provider off or for the facility education and assurances like I just said about your stable medical condition that’s an extremely important word those are extremely important words to use stable medical condition as I discussed before the reason you’re accessing treatment isn’t for your bleeding disorder it’s for the behavioral health condition that you’re experiencing and it’s really important to stress that the bleeding disorder is a secondary diagnosis and it’s stable five request that your provider get a letter from the facility detailing the denial this actually might be the most important point we need it in writing we need the facility to specifically say why they’re they’re denying you um and having a letter that way as Kate’s going to talk about in a few minutes um what we can do on a state and federal level with that and lastly submit your denial to BD sumac um on our last page we’re going to give um you know our information our contact information or you have Marla Mark and Kate’s information there next slide and Kate I’m going to pass it over to you great thank you so much Jackie so um this year we have a really ambitious agenda we are going to continue a lot of the work that um that Lucy and Jackie just talked about um this year we’ve we will continue working with Asam on the fourth edition as Jackie mentioned that should be coming out in the fall so we’re really excited to hear about that so we have some work that we’ll have to do to educate the facilities about the um the change in the guidelines there um we’re also going to continue to develop and expand our provider-focused resources so last year our resources really focused exclusively on getting um folks with bleeding disorders into substance use disorder treatment facilities but we know that there are just as many if not more challenges with getting into inpatient mental health facilities so we are expanding the provider-focused resources the provider toolkit to include um tips and tricks and suggestions recommendations for how to facilitate access to those mental health facilities um we are also beginning some new work um at both the the state and federal level that really focuses on addressing this issue of discrimination in our community both at the the federal level and at the state level and so at the federal level we have already had a conversation with the Substance Abuse and Mental Health Services Administration samsa um and they were very interested in the work we are doing and expressed a willingness to work with us to really ensure that um that people with comorbidities people with bleeding disorders and other chronic medical conditions who also have substance use disorders or mental health conditions get the access to the treatment they need that this really is an equity issue and they saw it that way which was great um we are also um reaching out to the office of civil rights at Health and Human Services that’s another Federal agency um and we are hoping to work with them to clarify the legal mandate that it is a legal requirement that these facilities X accept patients with chronic conditions they can’t decide that that people with bleeding disorders are simply too complex and they don’t want to treat them that that’s just not okay um so we’re going to continue to do that work at the federal level we are also um beginning work at the state level so we have selected five different states um to really look at um at how the state regulations affect the facilities both the mental health and substance use disorder treatment facilities in the states um well much of the regulation of these facilities is done at the state level um and the states operate pretty differently some of the the states require um use of the uh the American Society for addiction medicine the SMS guidelines other states do not so it’s really important for us to kind of understand um on a state by state level how we can improve access so we’ve selected five states and the reason we pick these five states is because we had people in our Coalition who were excited about doing some State work um but we have tried to um to to get a group of states that do have some Geographic diversity so California Connecticut Massachusetts North Carolina and New York so we’ll be working in those States both at the state agencies in doing some education with subsequencies and mental health facilities um and seeing um how we can have an impact at the state level we are also working on developing resources for people with bleeding disorders themselves so um we are very shortly um in the next couple weeks coming out with a toolkit for chapters so chapters will be receiving information about the work that we’re doing that they can share with their communities so that um that people like you people with bleeding disorders themselves or family members um are aware of this issue and know what to do if they find themselves um being denied access to the care they need um we’re doing presentations like this to raise awareness but we are also developing a toolkit specifically for individuals with bleeding disorders so some materials that you can have um that you can share with a treatment facility or share with your provider to help facilitate the access um but with all the work that we are doing we really need help so we are looking to the community to help us um do this important work we have um BD sumac the bleeding disorder substance use and Mental Health Access Coalition operates at the Coalition level we meet monthly um but we also have a number of work groups we have our community chapters and Communications team each of these teams also work meets monthly and does work on all these various issues within them so we are looking for community members to join our communities team providers to help us work on the provider team and then folks who are interested in either um on helping us Advocate at the federal level to join us on the federal team or if you live in one of those five states that we mentioned California New York North Carolina Massachusetts and Connecticut um if you live in one of those five states we would love your help on the State team so we are really excited to to hear from you about um whether you have had experiences um being denied access to care and and what happened there or if you have questions about the work that we’re doing um or suggestions for us we would love to to hear from you so thank you again for joining us today and to nhf for the opportunity to to present we really appreciate it that was wonderful thank you very much um for your presentation before we hop into the Q a we have just one quick announcement nominations for the awards of Excellence are still open through May 5th you just head over to hemophilia.org BDC you’ll go to the program Tab and click on Awards of Excellence then from that page you can click on the button for the nomination form it’s just a reminder self nominations are not allowed at this time but you can nominate somebody that you know right okay so uh if you have any additional questions make sure you throw them into the Q a or just comment on whatever platform you’re streaming on but our first question for you today is Has anyone used the toolkit thus far and how did it work Jackie I was gonna say yeah I guess because I just recently used it um last week for one of my patients um so you know we had a patient who was in the emergency room for over 48 Hours waiting for an inpatient Behavioral Health bed um I’m in the state of Connecticut and unfortunately as many people probably know you know we are in a national crisis we are in a Behavioral Health crisis on an opioid crisis here in the United States so finding an inpatient bed is extremely difficult at Baseline um and you know we raised this point because you know patients with bleeding disorders we just want Equitable access we’re not asking for you know them to jump the line right you know we’re just asking you know for an equal playing field for everyone um so unfortunately my patient was denied a facility placement after the facility learned that they had a bleeding disorder specifically they were denied because of the bleeding disorder and they heard that verbally I didn’t find out about the case until the family contacted me saying what do we do how do we communicate to this treatment facility that there’s they have a stable condition um you know it was a patient who wasn’t on any medications again for patient privacy I’m not going to talk about the diagnosis here or any identifiable information but they weren’t on any medications they weren’t infusing so it was really just based on the fact that they had a bleeding disorder and I you know let Kate and Marla know I referred to the the toolkit and we went step by step with the toolkit and we were able to have our HTC medical director talk with the facility medical director once they were able to have that conversation the facility medical director felt more comfortable having the patient and come into their facility as our medical director kept saying was the patient has a medic has a stable medical condition any patient who slams their head or Falls should get care in an emergency room it shouldn’t just be somebody with a bleeding Disorder so we really wanted to stress that um you know just because they have this diagnosis just because you have this diagnosis doesn’t mean you need to be singled out you should get appropriate care if you’re if your medical condition is feeble if your medical condition is not stable that’s a different story but this patient’s medical condition was extremely stable um you know had no issues with their bleeding Disorder so again I went to the tool kit I don’t know if we’re getting access to the tool kit it’s on the new New England hemophilia association website we can always plug it into the chat as well um so again there’s like a step-by-step guide and I followed it and I was successful and the patient was admitted um immediately the next day so um it was it worked I just want to add also that I believe it was mentioned but honestly my dog was crying so it was hard for me to hear but is that this is a living document we’re constantly making iterations or changes to this document we’re making it not only stakeholder specific meaning community members providers emergency departments whomever the audience may be but there are things which are going to work we’re just trying to figure out there are things that are going to work better in certain States and in certain areas that you know we’re going to need you know feedback on in terms of how well or how not well in some cases that this is working you know we’ve learned a lot over the last year and I think it’s in you know it’s always going to be a work in progress if you will fantastic do you have anything else to add before we move on to our next question no okay great um so this is a great question and it’s very timely because March is not only bleeding disorders awareness month but it is National Social Work worker month but what is the role of the HTC social worker in this process I can respond to that because I think it it really depends on the situation I’ve had patients that I find out that they need acute mental health treatment when they’re already at the mental health facility and then oh nobody thought to look at how are they going to get infused while they’re inpatient so um we’ve often had to coordinate with them trying to figure out where the patient could potentially go if they could not stay at that facility if there was no way that they could get factor in identifying places where they were going to be able to get appropriate treatments and um the other piece of this is we’re basically the ones that are often in the front line making these calls even if it’s not the HTC social worker it’s the social worker in the emergency room that the patient came in for in in crisis and they’re the ones that are providing the documentation necessary to the facilities to um try to get the patient accepted so um it’s important to try on on as the social worker in the HTC to make sure that you have good communication with the social workers throughout your medical center to make sure that they’re aware that there are potential issues that might come up with patients with bleeding disorders and that the HTC is a resource to help when you’re dealing with the denial of a patient going to any facility you know I’m I find myself I’m often the one doing the Outreach seeing that oh the patient’s going to need to go to facility ABC and I know it’s going to be an issue so you know we try to be proactive and to let them know this is what we have dealt with in the past and here are some suggestions that we can make but that one that the patient one has a right to get the behavioral health treatment that they need and to that there has to be a way for them to continue their treatment so they can safely participate in the program that they’re going to be entering I don’t know Jackie you have other things anything else to add I think you’ve got that really well one thing I would say is for any of the patients on a call um call your HTC um you know make sure that they they are aware um because you know we we can intervene you know in the community level um you know we are trained clinicians a lot of the HCC social workers or trained clinicians um so we can work on different Avenues and work with you on you know figuring out you know maybe working with a psychiatrist or going to an IOP um a PHP program so we don’t need that residential level of care but we’re here to help support you um so I just want to encourage you to reach out to us because that’s what our job is and thank you for the Social Work shout out Social Work month shout out yeah absolutely okay so what if I’m not at an HTC and I don’t have a social worker how do I get help that’s a really great question um so we are aware not everybody has connections to htcs you know I am very lucky I’m in Connecticut we have three htcs in the state but we know some people are in rural areas right and their local HTC is Maybe five hours away um and their care is managed by their primary care doctor or another hematologist work with those providers um you know work with your primary care doctor um they you know have a lot of information and they can help support you whether with medication management um you know there is um medications for substance use disorders they might be able to refer you to a local psychiatrist or therapist I would also say that if you are in crisis if you are actively withdrawing from substances please go to an emergency room or a detoxification program that’s really imperative because that can be life-threatening do not stop your substance on your own talk to a medical provider about it and if you do go into let’s say um you know your local emergency room or um or hospital and you’re admitted in the hospital that’s why we created the toolkit provide the toolkits to those providers you know let them know these are the steps that work or have worked right as Marla said it’s not guaranteed right you know it’s still a work in progress but definitely you know give those resources to whoever the referring provider is your primary care doctor is an important part of your care even if they’re not treating you for your bleeding disorder I don’t know if you have anything else Lucy yeah and I would say too to you know and um when in doubt I always say reach out to the chapter as well because they can often connect you with the experts in your state that can advise your providers what to do and maybe if they don’t know how to access the toolkit you know I’d be more than I’m always happy to give to do a consult and give people the resources that I’m familiar with if asked and let me just all right go ahead Marlon okay so let me just say our social workers in this community are the best you guys hold a very special place in my heart so shout out to all the social workers and they are your go-to resource right they are the ones that can help you not only navigate before but navigate after enduring right they just need to be uh told and quite often you know whether or not you go to a HTC or not is that the more people we can get to recognize the scientists you know that this is an issue the better way off we are as a community to circumvent these problems and address them soon or rather than later and as a community member I I don’t think I said this at the beginning but um but I’m the mom of a six-year-old with severe hemophilia a and you know we have learned how to advocate for ourselves we have to advocate in in so many circumstances we know more than the medical professionals who are treating us um and so more about the condition that we have than than the ER doctor who we’re seeing and so a lot of times it is up to us to share information that we have with those medical professionals and so this case is no different um we really need to be the ones to let folks know that the reason that we’re getting a denial might be because of our bleeding disorder and here’s some information that that I’ve gotten from um from this National Coalition that can potentially help facilitate my access so sometimes having those conversations with your providers and advocating for your yourself and your family is really important great thank you so much um so we’re we’re running down to our last couple minutes um so I have two more remaining questions for you but the first one is if I’m stuck in the emergency department waiting for a bed what do I do I’ll just briefly say like I said unfortunately we are in a crisis right now um so you might be waiting just because there’s not any beds available um or if you’re being told if you’re denied because of your bleeding disorder to any facilities reach out to your HTC like we said if if you are denied you know call your HTC call your social worker um if you have a social worker call your nurse call somebody at your HTC um let them know what the situation is um depending on the circumstances um like Kate said we have state programs I know it’s just five states but we can work on trying to find out who the state Regulators are um so let your providers know and they can always reach out to BDC Mac your provider can reach out to BD sumac there are also other levels of care PHP IOP outpatient so that might be another option for you and Jackie just because not all of us community members know what those are can you help translate the alphabet soup yes so PHP I apologize um it’s so ingrained in me um it’s partial Hospital program so it’s basically where you live at home um but you go into a program um it’s intensive you go four to five days per week um and you’re there for about six hours so you’re getting the same care you would receive in a residential program but you’re just living at home and IOP is an intensive outpatient program and it’s a step down from PHP it’s about three three days a week for about four hours per day but again you’re still getting that residential care you’re just living at home um getting the care that’s really what the difference is great thank you oh Lucy go ahead I see you unmuted oh yeah and I was just going to say you know when in doubt you know always if nothing else you know contact your primary care provider contact other people that you know of that could potentially help in this situation sometimes um having a physician that’s familiar with you will help you be able to access this care and like Jackie said I mean it’s not just in Connecticut it’s in every state trying to get beds for this type of treatment right now it can take time unfortunately it can take hours emergency room wait times are up all over the country um even for issues to just you know routine Health Care issues and beds um so it can take a while sometimes to wait for a bed you know um and just you know it’s important to focus on why you’re there and not to just give up or feel rejected but just to keep on trying and knowing that you know just if you keep on asking you will get help one way or another and the other thing I would say is share your story with us so if you have experienced a denial please let us know um especially if you experienced a denial and you got in um we would love to know that um you know especially if you’ve used the toolkit we want to know what’s working or if you’ve been experienced a denial and nothing has worked we need to know that as well the only way that we are going to address this issue of discrimination is if we can demonstrate that it’s a problem and patient stories can help make change it really matters to our legislators and to the policy makers to hear from people who live in their states who live in their communities who are struggling to get the treatment and care that they need so um so please help us address this issue at the national level by by sharing your story and if you’re willing to lend your voice lend your time um we really are beginning to make change which is incredibly exciting but we need more resources we need your help to um to continue the work of this Coalition so um so please I I know well we’ve already shared our contact information in the slides it will be coming out um in follow-up to this webinar as well um but we would love to hear from you so thank you fantastic thank you and we’ve got four minutes so I will throw the last question out but how long is too long to wait in the emergency department if you ask me personally as a human five minutes is too long but um professional like I mean it’s hard to say right and I I’m gonna defer to my providers on this call so it’s really not a one-size-fits-all question sometimes if you’re seeking Behavioral Health Care you could be on a psych hold so we kind of can’t tell you how long is too long because it really depends on what you’re seeking care for um so I would defer to the emergency room providers they have Physicians they have social workers there communicate with them um if they feel like it’s a safe discharge plan to discharge into the community and go to one of those um you know other levels of care you know that’s great if it’s unsafe if they feel like it’s an unsafe discharge they actually might admit you into the hospital that could definitely happen depending if you’re withdrawing and you need medication to help you withdraw so it’s not really a one size fits all but again communication is key as Kate said you are your best Advocate you know your bleeding disorder probably more than the emergency room physician unfortunately right but that’s really with any chronic rare chronic health conditions um you know we’re coming off of rare disease day yesterday you know you have the power you to make change to advocate for yourself so definitely do that and always have your um HTC always contact your HTC um because we are your Advocates as well and and I would just add that you know if you feel like you you are stuck in the emergency room and things are taking too long it’s important to start asking some questions so ask them why is it taking so long is it that there aren’t any beds or is it because of my bleeding disorder and if there aren’t any beds then then you know then you have to wait or go with with what Jackie was saying with looking at alternatives but if it is because of your bleeding disorder again providing your provider giving your provider some of these tools and resources to help facilitate your access um will be will be important fantastic well once again I’d like to thank all of you Kate Jacqueline Marla and Lucy for taking the time to join us this afternoon we appreciate your time and your expertise I’d like to thank each one of our viewers for joining us as well please note that this recorded webinar will be available on Friday March 3rd at hemophilia.org under the events tab with all of our archives webinars also available in the events tab is our upcoming schedule for our weekly Wednesday webinar series thank you for joining us this afternoon have a wonderful week and we will see you right back here next week as we continue the series have a great day thank you
Equitable Access to Behavioral Health Treatment for the Bleeding Disorders Community
Speaker(s): Kate Reinhalter Bazinsky (she/her): Chair, Bleeding Disorders Substance Use & Mental Health Access Coalition
Jacqueline Bottacari (she/her): Licensed Clinical Social Worker, Yale Hemophilia Treatment
Center Marla Feinstein (she/her): Senior Policy and Healthcare Analyst, National Hemophilia Foundation
Lucy Ramirez (she/her/hers): Social Worker, Rush University Medical Center HTC