Transcript of “Rights Here, Rights Now –

Episode 28: Chris Miller, Head of Brain Injury Services Program at DARS

Produced by the disAbility Law Center of Virginia.                                                            

[INTRO]: The information provided on this podcast does not, and is not intended to, constitute legal advice. Instead, all information, content and materials available are for general informational purposes only.

[Enter host, Molly Carter.]

[Molly]: Welcome to Right Here, Right Now! A podcast about disability advocacy and activism. I'm your Advocate host, Molly Carter.

[Enter host, Suzanne Herbst.]

[Suzanne]: And I'm your Advocate host, Suzanne Herbst.

[Molly]: Every two weeks we dig into to relevant issues, current events, and avenues for self-advocacy.

[Suzanne]: Because someone has to!

[Molly]:

And it might as well be us.

[Suzanne]:

This podcast is produced and edited by the disAbility Law Center of Virginia, the Commonwealth’s protection and advocacy agency for disability rights. Find out more at: www.dlcv.org.

[Enter, hosts Molly Carter and Suzanne Herbst]:

[Molly]: Well, I’m very excited for our guest today, Suzanne.

[Suzanne]: Me too! We have Chris Miller—Head of the Brain Injury Services Program at D.A.R.S. She’s just so knowledgeable and also just a delight to talk to.

[Molly]: Yes, and she is already connected to one of our advocates here, Elizabeth Horn. So we are lucky enough to sort of, already, like have her in our circle, and we are just so excited to have her here and dive more into everything about what she does.

[Suzanne]: Absolutely!

[Molly]: So, before we jump in let's check out disability in the news!

[Due to the shortage of housing options for those with developmental disabilities, new housing communities are popping up all across the country. A new project, known as Crossbridge Point, outside of Indianapolis Indiana is currently being built. This community will be on 15 acres and will offer homes for those with or without disabilities. The project is set to open in 2023 and will include various size homes as well as a community center and will feature clubs and classes promoting independent living skills. This community will allow families to purchase homes, but also will have homes for rent.

The nonprofit funding this project, ILADD Inc. has learned that families really value being able to purchase homes so tenants can feel secure in their housing and not worry about being at the mercy of a landlord. Owning a house also allows for more specific accommodations or modifications and helps owners build equity. There are other communities similar to this in Arizona, Texas, Wisconsin, and Missouri that all offer a similar style of community living. It is so great to see these communities rise up all over the US when the need for them is so high.]

[Suzanne]: Thank you so much for being with us today Chris; we are so excited to have you.

[Enter, Director of Brain Injury Services, Chris Miller]

[Chris]: Thank you!

[Suzanne]: So, let’s get started. What is the Brain Injury Services Coordination Unit at DARS??

[Chris]: Okay! So, DARS, the Department of Aging and Rehabilitative Services, by its name, obviously-- we provide services for older adults and their families. We also are—we book Rehab Services for people with disabilities and their families. And within all that, there is a department called the Department for Community Living. And that is to provide community based supports for folks with disabilities and then WITHIN THAT there is a unit that is specific to brain injury services. The General Assembly has designated DARS as the lead agency on brain injury. And that means that we direct and oversee just about six million dollars a year of funding—from the state. We pass that along to nine providers across the commonwealth who serve people with brain injury. We also provide grants for brain injury services and research through the Commonwealth Neuro Trauma Initiative, or the CNTI. A board appointed by the governor puts out RSP’s for this funding, which comes from a trust fund of fees which come from DMB, which they set aside specifically for us—for this.

The Brain Injury Unit also administers a federal grant, which can be used for direct services—and this might speak to the heart of the Disability Law Center- those folks—it can be used to address systems change that includes access to services for brain injury survivors. Right now, in our federal grant, we working on the intersection between brain injury and substance use disorder, and mental illness. We’re working on really amplifying the voices of people with brain injury- in all areas of service deliver and in government. We’re focusing on support for caregivers.

So I know you know we’re not actually a direct service care provider. I know you’ve talked to the Brain Injury Association of Virginia and they provide direct services.

They’re the people that try to make sure that we fill (have) the capacity for services for folks with brain injury. [….]

I will mention that the Council for the Brain Injury unit is advised by the Federal Counsel and is appointed by (the) commissioner Kathy Hayfield,-- It includes representatives and commissioners through other nonprofits. And that council meets quarterly to discuss progress, our views on the federal grant, develops a state plan focusing on brain injury, and communicates priorities from the public, kind of funnels those up—to the commissioner and then, ultimately, to DARS. One other thing that I just wanted to mention, if this is okay, is that: A lot of people don’t know that Virginia has always been a leader in brain injury. For example, Virginia was the first state to develop a state registry for brain injury (wow!) Legislation. And that started in 1984. So if someone goes into an ER, then the state collects data on any possible brain injuries, and then we’re able to outreach to those folks through the BIAOV, to let them know about services that are available.

We were one of the first states, in 1986, to establish a State Brain Injury Advisory Board—That still exists today! We were one of the first states, as I mentioned too, that was DARS, in 1992, that made that [particular] designation. And Virginia’s home to one of the largest models of Brain Injury Assistance Programs—Which really focused on long term research of the outcomes of folks with brain injuries. And that’s based, um, at VCU!

t them know about services that are available we were one of the first States in 1986 were one of the first states to designate Elite agency as I mentioned that’s through DARS and that was in 1992 when the general assembly made that designation brain injury model systems program where they really focus on long-term research about the outcomes of brain injury, at VCU!

So Virginia has a lot to be proud of in terms of brain injury. Not to say that we don’t have room to grow. But, we’ve got a nice foundation in place.

[Suzanne]: Oh my goodness, yes! Yeah, I mean, that’s, I think, more than I ever imagined than what’s going on in Virginia. And, probably a lot of people [didn’t know that,] which makes me even more grateful that you are on today, so that all of our listenners can learn more about the great work you’ve done.

[Molly]: So,Chris, you've already touched on this a little bit. but we did want to ask you- What specific services are available for people living with brain injuries? And, again, this kind of goes off what you were talking about before but we just wanted to ask you about some of the more specific services that might be available?

[Chris]: Oh yeah, definitely! Because, that’s what people listening here want to know, right? What’s available in my community? if I have a brain injury or after I sustain a brain injury? Or if I have a family member that has one? What direct services do they have, or do they provide? Because right now, there are over 2,000 people in Virginia with Brain Injuries who are served in the community—9 state funded programs The four base services include: Case Management, Club House and Housing Support Base Services, and Resource Coordination and Personal Assistance. So, case management, is in every one of the areas in which we have services, and that’s really similar to case management in other systems.

Case managers are there to help you identify what your needs and wants are, AND THEN, make sure you connect to those services, so that they continue to meet your needs. Club house programs across Virginia, this is another area where we are leaders—Virginia really is a leader in this area- It has always had a strong clubhouse program. That is, really, member driven. This is based off of what’s called a Work Day Schedule. And that means that you come to the program, SPECIFICALLY, to run the business of the clubhouse. There’s different units of communication, there’s a kitchen, there’s a members unit, and members do the work there, every day. And build a community in which they can enjoy each other. Clubhouse programs have more of an educational and a social aspect to them.

But, they are just as valuable. So, Virginia has 5 Clubhouse programs. We have more, I think, than any other state right now. And, Virginia’s clubhouse directors are among the leaders nationally, in the clubhouse movement, for people with brain injury. Resource Coordination is what the BIAOV does. So they do outreach, statewide, to try to keep that message out there that if you have a brain injury, there are services out there that ARE available to you. You can call their 1800 number, and they will help you hook up with services in our community. A very small program that we have is personal assistant services. That is for folks with brain injury that can’t afford Medicaid, so that they can get assistance they need.

We have a bit of a waiting list for that program—just because it is so small and it’s so needed. But that is a very important program. Our programs also provide additional programs that are NOT funded by the state, and that includes assistance with employment, some provide housing support, education and support groups for both people with brain injuries AND their caregivers. Transportation, and mental heath counseling. We also make sure that all of our programs are linked tightly with DARS vocational rehab services, so that folks who are interested can either find employment or return to employment. That’s such an important thing!

[Suzanne]: Absolutely! And, I mean, what’s great about this is that it sounds like you’re not just telling people what’s out there, and giving them resources they need, but you’re really building communities as well.

[Chris]: Yes, and I’m glad you mentioned that. That’s interesting that you mention that. I love that! And I think that’s really true if you go to any one of the areas where you have programs, you will see that. AND if you ever get the chance to visit a housing area or a clubhouse--- and I know with COVID that we don’t really get the chance to do that, but—I highly recommend that! And even if you do, you know, a podcast with some of those programs, you’ll be impressed and see that—it’s so true, it’s so true.

[Suzanne]: I know that we’ve had some advocates here who’ve visited the clubhouses. And they’ve only had good things to say, so. J We can already see the positive impact.

[Chris]: Yes, its’ wonderful to see that! It’s FUN to go visit!

[Suzanne]: SO, now that we’ve talked about some of the programs, we’ve talked about some of the services that are available, that you provide – now, what are the critical issues that are facing people with brain injuries and their families?

[Chris]: Okay, yes. Well, you know, we just talked about the services that are available and that Virginia provides, but, there are still issues. And one of the issues is there’s still GAPS in services! Not all areas of the state have access to all of those services that I just mentioned. There’s a central southern portion of the state that does not have access to any services. There’s a small couple of counties near the eastern end of the state—Rappahanock county- that’s up in the north central region- they don’t have access to services right now. So we’ve got to continue, got to continue to work on that. There can be a waiting list in some areas- particularly for case management and the clubhouse program.

What’s really important to me too, is that, like many people with disabilities, people with brain injury have things like limited income or physical limits and that limits access to those core things that we all value and that’s employment, housing, transportation, social opportunities, healthcare. Those are some of the things that those of us just take for granted as basic everyday needs. And so, those are some challenges. Brain injuries can often result in behavioral changes as well. And for those with extreme challenges, there are few, if any, supports [for that] within the state. So, we have had some folks that have had to LEAVE Virginia to get certain services. And that’s tough for them, and it’s tough for their families.

Because that’s even harder then, to stay connected. That leads me to another issue with brain injury survivors—which is in the disability community as well—And that’s caregivers—family caregivers, those are important for brain injuries and their families. And it’s November, which means that it’s National Caregiver Awareness Month (wow). Shoutout to the caregivers! And, more needs to be done to acknowledge and support these folks. I also want to say, one of the things that I learned since joining the DARS brain injury team is that brain injury is more than just where the injury occurs—the time of the injury- but it’s also more the time AFTER that. It’s a chronic, a chronic situation. That may require lifelong support.

And we need to keep building awareness of that. Related to that it’s also, it can be, an invisible condition. And we hear from so many brain injury survivors that, people will say, “Well, what do you mean you have a brain injury?” Or a challenge. Or even accommodations—you “look” just fine. Imagine having something that impacts your life that much & people can’t see it. I get it because, people will say—“I know I have problems with short term memory, but others can’t see it. So, we need to overcome that dismissing people’s conditions just because they don’t show up on the outside to others.

[Suzanne]: Yeah, you know, those are such great points. You know, the invisible disability. You know, you have to deal with, “I have these things and nobody else can see it.” So yeah, I love that you’re bringing awareness back to that. That’s such a difficult job, and it can be so emotionally taxing/draining for family caregivers. Like you said, however you define family, it’s important to bring awareness to that.

[Chris]: Yeah, you know, ever since I started this, I’ve long been a champion of caregivers, and also, just over a year ago, became a care giver myself- I’m a long distance caregiver—for my parents. And that’s when it really brought home for me, “Oh my gosh, you know, I have been telling people about this, because I believe in it. But now I know it in a whole different way!” That definitely changes your perspective.

[Suzanne]: Oh, absolutely, and I would think that especially as a long distance care giver, some of that’s a 24/7 job! Even if you’re not there, you’re thinking about it.

[Chris]: Oh yeah, that’s a great point. Even when you’re not there, you are thinking about it.

[Molly]: Especially-

[Chris]: Go ahead, Molly.

[Molly]: I was just gonna say especially if it’s a family member or a close friend or a loved one, you know, of course it’s a, you know, 24/7 job, because even if you’re not there, your concerned about them, or you know, wondering if they’re getting the services that they need; But also, like, the socialization. I feel like COVID has really brought that to the forefront of how much we just miss being in the presence of our loved ones and I imagine for people with brain injuries that’s something that was there from the beginning but has now been compounded given the time that we’re living in.

[Chris]: Oh, great point Molly. Yes, absolutely. We see that now, not only the lack of socialization, but as we’ve said the impact—the negative impact of real social isolation. You know we all have that! We all want to feel like we’re connected to people and giving value to the community. No matter who you are! [Truth.]

[Molly]: So that kind of leads into-which we’ve kind of talked about- our next question, which is- How has COVID affected the services for people living with brain injury?

[Chris]: That is a good transition. And, you know, to transition and also just to summarize what we’ve talked about before—you know, we’re all more alike than we are different. We all have the same stressors, the fears, the needs and wants to feel connected to people, and that’s true of people with brain injuries, as well. And what’s also true is that it has been REALLY, really encouraging for me to see that the way in which brain injury survivors have stepped up in the disability community during COVID. Our club houses and our day support programs have become virtual, you know, with a really, really quick turnaround.

And then, you know, as soon as they became virtual and started providing services online, you know, electronic meetings, Facebook meetings, you know, people said, “Okay, how are we going to be able to do this?” People started operating out of you know, this hybrid world, of both online AND on site. They have done a phenomenal job with that. And case managers? Again, they’ve gotten creative they’re using phone, text, email, etc. They’re standing out on lawns. We even have some great photos of people on the Eastern Shore connecting with folks, you know, through windows. We had one case manager go into a nursing home to get a grandmother some technology they could use to connect with loved ones—and you know, eventually they said, “You’ve got the technology we need for that? Come on in! So people have gone above and beyond to find ways to connect with people.

The brain injury service community also built their own ASSESMENT TOOL. Based on what they know. In order to determine—who is most at risk?- whether that is medically, or socially, as we just talked about. They did over 2500 assesments in the months since COVID began, so that they can know what the needs are, what they need to prioritize, how they could do that, and what they need to do. They gave out almost 3,000 packages that included PPE and other supplies. They just immediately mobilized. Because as we were saying earlier, It’s a community! It’s not a program- it’s a community. And each one of the people knows the other people in their community. One of the really neat things when they did start to reopen, were the providers descriptions of people—being able to see each other in person after a long time—which is—that really warms people’s hearts.

And it is true for us, too, you know! There is no us vs. them in this! There’s just us. It doesn’t feel that way—us vs. them. J So, I’m really proud of the work that they’ve done during COVID.

[Suzanne] Yeah, it’s like you said, we’ve all had to adapt to this in our own way, and it sounds like those in the brain injury community have done that too. In order to have the full impact of services. And to make sure people are still getting the things they needed. You know, we talked about social isolation, but with that, even with the physical isolation, we can help minimize the social and emotional isolation part of it.

[Molly]: Especially too, you know, if your injury impacts your physical mobility or not being able to go from place to place. I think we’ve really seen how technology has helped people step up.

And like Suzanne said, have the same, or at least similar interactions, you know. We can still look at each other and feel that emotional connection even if physically, we may feel stuck or we may feel far apart from each other.

[Chris]: Yeah! I love what you guys are saying, because it’s hard to find some silver linings in all of this. But isn’t that one of them? Is that we really werer stuck in some traditional ways. And this is really going to open some doors for people with disabilities to say, “Hey! Now we can participate because we know how this works!”

[Suzanne]: Exactly! We’re almost like a training run, really, when all of this is over, we can say, “Well, this worked, so let’s keep doing it!”

[Chris]: [Laughes] Look out world!

[Suzanne]: Well, Chris you have been so kind to come here today and tell us all about your work. We really appreciate all that you do, obviously, so this is for you—How can we here at DLCV, support your work?

[VIRGINIA]: Well, you already do! You have a representative on the Brain Injury Advisory Council, and that is Elizabeth Horn. She has been a long term advocate for folks with Brain Injury—in fact she used be the director of the Brain Injury Association of Virginia. But I also feel that you all support our work every day because we share a lot of values, from making sure people have fair and equal access to housing, employment, transportation and healthcare live in the most appropriate and integrated environment in our world—free from abuse and neglect- and then their voices become their best advocates. So, keep doing the work that you’re doing, please! And let us know how we can support that! How we can help with the self-advocacy movement, amongst people with brain injuries, how we can bring that in as well, would be the one thing that I would champion. We’re already partners in this work.

[Suzanne]: I like to think so. I’ll also just take a minute to say how much I adore Elizabeth Horn, because I like to do that whenever I can. Like you said, one of our long term advocates who’s worked with people with brain injuries for years and years and years, and is one of our social security experts as well. We adore her & we’re so glad that we get to work with her!

[Molly]: Yes, I was just going to say, it’s such a privilege to know Elizabeth and work with her, and we really admire the work that she does.

[Chris]: Yes! That’s why she was- for the Brain Injury Association of Virginia- one of the Recognized Advocates this year! J Very well deserved!

[Suzanne]: Yes, I just have to plug Elizabeth whenever I can—I can’t help it. We’re so lucky that we’re able to come together and help each other out and do this together.

[Molly]: So Chris, just lastly, for those who may be listening, those that may be familiar with DARS or DLCV, how can OTHER PEOPLE outside of these organizations, get connected with your services, or learn more about what you do, or pass your information along?

[Chris] Yes, you’re right—we’re kind of hidden and tucked into DARS, so you can reach us toll free at 1-800-552-5019 and then we could help you with the right issue or get you connected to the right resources. With whatever challenges your facing. And you can reach us online at www.vadars.org …. Feel free to just google DARS brain injury services. We’d love to hear from you and get you connected.

[Suzanne]: Fantastic, well is there anything that we missed? Anything that we didn’t highlight that we’d like to cover today?

[Chris]: No, no I’m just really happy to have the opportunity to talk to you about what we do here in Virginia. For survivors of brain injury.

[Suzanne]: We are so grateful that you came on today.

[Molly]: And now, for a dLCV highlight!

{In Fiscal Year 2020, dLCV utilized a multifaceted approach to improve the accessibility of substance use disorder treatment services for Virginians with disabilities. This included reviewing Medicaid managed care contracts to assess behavioral health service coverage options, training public and private treatment providers across the state about their obligations under the Americans with Disabilities Act, and surveying individual treatment locations for physical accessibility. Thanks to dLCV’s efforts, two large providers have already completed renovations to improve accessibility of their treatment locations! If you have a disability and believe a substance use disorder treatment program or other medical provider is failing to provide you with a reasonable accommodation, please contact us at 1-800-552-3962! }

[Suzanne]: So that was our interview with Chris Miller, the Brain Injury Services Coordination Unit at DARS. And she was fabulous. I think she gave everybody a lot of great information, and really shed a light on all of the brain injury services that are available in the state of VA.

[Molly]: Yes, I absolutely agree. I think with every guest we’ve had since COVID has really shed a light on everything, and has really just shown everybody how to be adaptable during these times and how to stay connected and how everybody can get the right resources. In these times everybody’s looking to get as much information and resources as they can and Chris gave everybody some great starting points

[Suzanne]: Absolutely, & she also gave us some great ideas for future podcasts, so that has made her an honorary member.

[Molly]: Yep, she’s stuck with us. Thank you all for listening to this episode of Rights Here, Rights Now, brought to you by the Disability Law Center of Virginia. We’re available on Apple Podcasts, Spotify, or wherever you get your podcasts! Don’t forget to subscribe and leave us a review.

[Suzanne]: If you need assistance or more information about DLCV and what we do, visit us online at www.dlcv.org

[Molly]: Follow us on Twitter at Disability LawVA and share us with your friends.

[Suzanne]: Until next time, I’m Suzanne Herbst.

[Molly]: And I’m Molly Carter. And this has been Rights Here!

[Suzanne]: Rights Now!

***[End of Transcriptions]***