CPF Executive Director Rachel Byrne and Minnelly Vasquez, a social worker at the Weinberg Family Cerebral Palsy Center, discuss cerebral palsy and mental health, along with opportunities for specific services.
Rachel Byrne:
Hi everyone. It's Rachel Byrne here, the executive director at the Cerebral Palsy Foundation. And I am thrilled today to be joined by Minnelly Vasquez, who is a social worker at the Weinberg Family Cerebral Palsy Center at Columbia University in New York City. And today we're going to be talking about cerebral palsy and mental health and different opportunities that you can look at in what services can be provided as well as things that can be done. And so, obviously welcome. Thank you for joining us.
Minnelly Vasquez:
Thank you for the beautiful introduction, Rachel. So at the Weinberg Family Cerebral Palsy Center, we have a wonderful program, which is dedicated to really looking at the cerebral palsy care throughout the entire lifespan, for the individual with cerebral palsy and the family members who are involved in the care. Now to take a little bit of a step back and say a little bit about me, because I know you introduced me first, but I went straight to talk about our wonderful program. So I'm a licensed clinical social worker and I received my master's in social work from Fordham University. And when I went to Fordham, I focused on disabilities and the aging population. And ever since I graduated, I was always within disabilities and aging in all aspects of what you can imagine. So that's a little bit about me and about the wonderful program that I'm a part of at the Weinberg-
Rachel Byrne:
I know, and the center obviously is so lucky to have you with obviously your experience, your background, and all those different things, because I think we know, just how important mental health is. And obviously we've just sort of come out of a pandemic where I think mental health has sort of come to the forefront for a lot of different people, but it is also extremely significant for those with cerebral palsy across the lifespan, and as well as parents and caregivers and the whole family network as well. And so Minnelly, I'd love you to sort of address that a little bit too. So what do we know about mental health and cerebral palsy and what can we do about it?
Minnelly Vasquez:
So with mental health and cerebral palsy, what we know is that there's very little research on it, like actual research, just on cerebral palsy and mental health. So there's a huge need for that to be a little bit more of a focus in the future, in my opinion. And then also just talking with other mental health providers who work with the cerebral palsy community and psychiatrists and other folks. And even here at the Weinberg Family Cerebral Palsy Center, we see that the mental health needs are much higher than the population that is outside of the cerebral palsy community. The mental health needs are higher for multiple factors, one there's isolation. There's also not as much socialization and those learning experiences that you have sometimes at school, at workplaces, at different activities.
Minnelly Vasquez:
So there's a lot of mental health needs based on just that social piece, because human beings, we are social creatures, we need to be interacting and that helps our emotional growth. And when we don't have access to that emotional growth, our mind, which is a powerful thing, it can pull us down or lift us up. And when we don't have that social connection, it pulls us down.
Rachel Byrne:
Yeah, I think that's so powerful. Right. And I think that is something that has been exacerbated in the last couple of years for lots of different people and for lots of different reasons. When we're talking about mental health, what types of things are we talking about here? Cause obviously mental health can be very broad, right? It can mean lots of different things, but what are some of the common mental health things that you see?
Minnelly Vasquez:
Some of the common diagnoses that I see in the CP community is anxiety. Anxiety, which completely understood around social interactions, whether they're going to be in a population or in an area where there's not going to be many wheelchair users or people with physical disabilities. Anxiety around transitioning from high school to college or from college to the workforce. That is one part. I also see post-traumatic stress disorder, PTSD from different circumstances that they have gone that have been unfortunately due to an environment not welcoming their physical disability and also parents and what they go through when they're giving birth to a child with CP and then not being able to have those first few hours or those first days that most parents have with their child of just constant connection and touching. Other mental health diagnoses are depression for sure. And then what can make it even trickier, which is really, really hard, which we're also trying to figure out is a personality disorder. They're not as common, but it can happen.
Rachel Byrne:
Sure, no, and I think these are things though, when we're talking about PTSD, when we're talking about anxiety and we're talking about depression, they are common. And these are things now that we do have ways and different therapies and different things that we can do to help. And I think this is the main thing, right. Is to actually go okay for these different pieces, there are things that can be done. And it's not actually...
Also, there's lots of parents that are going to be listening to this as well. And I think you touched on it a little bit that for parents, particularly if you have had a baby who was very premature and had that experience in the NICU, PTSD after the NICU is a real thing. And making sure that also the family unit is healthy and their mental health is sort of as best as it can be as well. And not just necessarily the child or the adult or sibling or whoever it might be.
Rachel Byrne:
But when we're sort of talking about those sort of high risk traumatic experiences that happen from PTSD, what are other things you sort of touched on that sort of, I suppose isolation can be, or those constant, I suppose, we talk about microaggressions and those different things. Are these things... Can this lead to PTSD? Is that something that can happen?
Minnelly Vasquez:
Definitely from what happens with the childbirth and for sure in NICU and also just the upbringing of a child with a disability. I've been working more lately with families and parents and that has been something... I've made it a point here at the CP center. I want to work more with some parents. I want to have to be able to understand the whole family unit of what's going on with CP and them in their lives. And in particular, the last thing you touched on, which is the microaggressions, what I've seen is that when the child is very young with CP, parents become just a devoted advocate. A lot of parents are becoming a devoted advocate to their child. And then I see them wearing themselves down and not as much pouring into their cup and just pouring it all out to make sure my child's needs are being taken care of.
Minnelly Vasquez:
They're included in the classroom, they're getting all of the special needs education that they can get. And I just see all of this happening. And then I'm just wondering, like, when are you going to take some time to join that group and do some session and connect with other people? When are you going to call on your community and your village that you've cultivated to be able to get back in there? And they're like, no, I can't I have to do one more thing for my child. I have to do another thing for my child. And it's okay to take care of ourselves. I remember a teacher said this to me a long time ago when they said, the best thing that you can do and you can teach your child is...
Because they learn by just seeing us. And for example, it's like you take a break and they see like, oh, mommy's taking a break, daddy's taking a break. My parent is taking a break just to relax and take care of themselves and to be with people who are going to love them.
Rachel Byrne:
Yeah, no, and I think it's really important, right? Because when we're not our best selves, it's really hard then to give that to somebody else. And I think, you've mentioned on a couple of different tips on how to do this. Cause I think that's a tricky thing though. It's like, all right, great. It's great to be told, okay, you need to take a break. It's great to be told these different things, but do you have any tips for parents or caregivers as it relates to their mental health and what are some of the things that they can do?
Minnelly Vasquez:
Okay. What are some of the things that they can do? So right off the top, which is one of the hardest things is scheduling it in your calendar and then adhering to that schedule. Cause the task and the schedule always shifts and it's like, oh, maybe tomorrow, maybe the next day. Sometimes, and in particular, what I like to do is for example, at the CP center, we have a monthly support group for family members. So they get reminders of that one time a month, it's one hour, it's just one hour, one time a month that they have to block out and then just spend time with other folks and talk about and vent and then also get a little bit of love back that they pour out to their family.
Minnelly Vasquez:
So that's one part. Another piece too, is that if things don't line up, that you can't socialize with people, music is so powerful. There is a lot of research around how music and sounds are very powerful. I'm a big believer in meditation, in particular sound bath meditation. I've been reading more knowledge around sound bath meditation that it's literally a massage for your brain, that's what it is.
Rachel Byrne:
All these timeouts, right. That we live such busy lives that we never just take that moment to be like, okay. And the acknowledgement, I think that's really powerful too, to see it be like, maybe I'm not feeling okay. Particularly if you've had a traumatic experience in the NICU and you've now, two years later and you've got your child into early interventions, you've got the diagnosis. It could very much now be like, oh, hang on. I'm not really okay. I need help and reaching out for that help. And so the question for you there is how can parents and caregivers find resources to help? You've talked about obviously the Weinberg Family Cerebral Palsy Center has wonderful programs and it's a priority that you've made for it at the center. But what other sort of mental health resources are out there for families?
Minnelly Vasquez:
So I wish there was, which is for anybody who's listening, this is a great business idea of a training for mental health on CP and providing CP mental health care needs and doing specific interventions for the CP population. Anyone who's out there listening there, isn't such a list of this specifically, but what I have found that is helpful is that you just look at specific things. Some folks with CP do not experience chronic pain, they might experience chronic fatigue and physical disability. So looking at therapists that focus a little bit more on that, chronic pain and physical disability. Some websites that I particularly like where you can even schedule a 15 minute call with a therapist the next day, if you'd like to, or in the next week, just to see if you would be a good fit is Headway, headway.com.
Minnelly Vasquez:
It's not nationwide, but they do have about 20 states listed where they have therapists, where they can be seen via telehealth in a platform. Another platform is called Alma. So that's another space where you can request a call for a therapist, let's say next week, 15 minute free call, check out to see if it's a good fit for you. And they focus on all things like caregiving, parenting, physical disability, chronic illness, pain, pain management, and treatments on that. Talkspace, there's another, betterhelp.com. So those are some of the resources and I'll make sure to email you Headway. And some of those other ones that are not as commonly known that I know about.
Rachel Byrne:
Yeah. We can put it in the comments for everyone who's watching as well to make sure that, if you do need access to these different things. And I suppose, just as a piece, if you are in a bad way, or if you are feeling like you're not coping, please reach out, there are people absolutely who are there to help. There is the national suicide prevention hotline, there's all those different pieces as well. And, and also, go see your doctor if you're feeling, that you are not being able to cope at this point in time. So, for families, obviously getting those different resources that are sort of a bit broader, but speaking about cerebral palsy specifically, you spoke that there's not a lot of resources that are available, that are specific to CP right now. But when we think about looking at mental health issues across the lifespan, and if you have cerebral palsy, what age should children or adults be screened for mental health issues? Is this something that can be common to have those questions asked, is that something that's available?
Minnelly Vasquez:
I think it should be done throughout the entire lifetime. I think it should be done every year as part of your physical check in. You know how we have our annual like visit with the doctor. I think that should be part of it. There's a PHQ-9, which is a very standard nine question questionnaire, just to see if whether the patient is at a high level scale of depression or not, it should be administered every year. But if I had to choose, if I had to choose a particular age range, I would say the transition of like, let's say high school to college, or even not even college, just transitioning out of high school, like what's going to happen with their life.
Minnelly Vasquez:
At that age, children, well, teenagers I should say, are still developing hormonally. And they're still very much coming into their own and emotions are heightened and it's a huge spectrum that they can experience within a day. So, which is, I think that age range, if I had to choose one, I would choose that age range in particular, because that's one also that we saw during the pandemic, we saw a lot of spike in depression, a lot of spike of suicidal ideation.
Rachel Byrne:
Yeah, no definite... And I think it's sometimes as well where teenagers don't necessarily feel comfortable talking to their parents or somebody else. So finding who they are comfortable to talk with and having that idea, that therapy isn't a bad thing. Sometimes we just need to talk to people. Sometimes we need to talk through our feelings and our emotions and come up with those different ideas of how to get through the next steps. For then teenagers, because we're now talking about that in their transition to adulthood, what about self-advocacy? What about some of those different things, what's available for them to learn those skills because I think this is a wonderful thing for sort of us to say, but that's actually something you need to learn. It's not easy to actually necessarily be able to self advocate for yourself and say, this is what I need or this is how I feel, particularly if you haven't done it before.
Minnelly Vasquez:
Yeah. So thinking about this, just in the medical setting, so here within our doctor's office, like let's say if someone needs to be treated for something specifically, we do a warm hands off, which is the primary provider being there part of the medical visit and introducing the other provider, who's going to help with these other aspects that the primary provider is not as knowledgeable about. So I think about that in that concept of the warm hands off is like us providers, we kind of need it too, cause there's going to be a whole new dynamic that's happening. I'm speaking, just in here in the medical setting of having parents and children having that very clear and transparent conversation of, I want to start now being more in charge of the medical pieces of my life and being the one deciding more and speaking up directly to the doctor.
Minnelly Vasquez:
So they could have that conversation first and then slowly having that warm hand off with the provider. So that's a great place to start that and implement those same techniques in different spaces. When you go to the financial aid, to apply for financial aid for college, when you go to apply for a job and you do that job interview, just learning that piece, because a lot is learned within a provider and a patient interaction as I've been learning with all of our patients, that can be repeated in different patterns in their lives.
Rachel Byrne:
Yeah. That's actually something that's really something to highlight actually is the fact that the skillset that you do need to be able to communicate with your doctors and to be able to communicate with your healthcare team can be used elsewhere and can actually be utilized in those skills that you learn and in a way, start to develop with your healthcare team. Sort of next question, so these are sort of things, okay, look, there's lots of different things we can do for mental health, whether it be, as you said, therapy, journaling, meditation, all these things to help us with different coping mechanisms, strategies throughout the day, but sometimes, medications are needed and are required for mental health needs depending on what that is. And obviously they are always prescribed by your doctor, by a psychologist, psychiatrist, and all those different things. But what sort of, I suppose things do we need to think about when it comes to medications and particularly cerebral palsy because we know sometimes they do actually impact what movement looks like.
Minnelly Vasquez:
Yes. So that's a big thing. For some medications, definitely looking at if it impacts specificity, working with your doctor, who's your primary doctor for your CP, working with your primary doctor with your CP, your therapist, and then also the psychiatrist. And ways that this can look like is by the doctor, your primary CP doctor sort of compiling about what your CP looks like, the medication and creating a document around that. And you can talk about that with your doctor in a medical visit. And then also asking your therapist to sort of provide the same, a document, just doing a concise view of what your mental health, what are the triggers, what are your coping skills that you've utilized and what are some of the symptoms in your diagnoses? And then also then bringing this all to the psychiatrist and the psychiatrist looking at this and seeing, okay, how can I work with this?
Minnelly Vasquez:
And then the very, very truth, it's a lot of trial and error. It's a lot of trial and error. I wish it wasn't, I wish it was like this medication's for sure going to work for you. But when you have a good healthcare team or just even one really good provider that you can go to, you can say to them, like, I'm not sure this is not working even with your therapist. Cause a lot of the times for therapy to really work, you have to feel that your therapist cares about you and you care for your therapist.
Rachel Byrne:
And yeah, it's a really important relationship in that bond to form.
Minnelly Vasquez:
Big time.
Rachel Byrne:
And I think the piece is to go, okay, if, for example, that medication is causing your spasticity or your movement patterns to worsen or you're seeing different symptoms, to have those conversations. Cause there could be an alternative. And I think these are the things to know is that it doesn't have to be that way necessarily. So to make sure to keep that open dialogue happening and go, oh actually, I felt so much tighter after taking this medication, is there something else that might work better for me?
Minnelly Vasquez:
Absolutely. Absolutely.
Rachel Byrne:
So Minnelly, you're a licensed social worker.
Minnelly Vasquez:
Yes.
Rachel Byrne:
But can you give us a... What is the difference between the role of a social worker, the role of a psychologist, and the role of a psychiatrist when we're thinking about care for patients with cerebral palsy?
Minnelly Vasquez:
Okay. Yeah, that's a really great question. So social workers and psychologists are very similar, but we do differ in some aspects, and we differ in the sense that psychologists, they're within the school, they're within their university doctoral programs throughout their entire time. Just really learning all of the facets of psychology. And it can be a little bit more of the cognitive brain looking at how emotions, interactions, all of that and how that impacts their mental health. And with social workers we're looking more at systems and care management and crisis intervention and making sure things that are urgent needs are being provided to patients. Now sometimes where we are similar with psychologists is that if we would want to do more of a mental health credentialing and licensing, then we would have to do similar to psychologists. We would have to do contact hours and education and supervision in order to be credentialed into being a clinical social worker, LCSW, to provide individual therapy.
Rachel Byrne:
No, and I think this is really important for people that are looking at going, okay, how do I find someone that's right for me in my area to make sure that people do have the right credentials and that people do have the right education for what they're looking for. And it's just really important. So what's then the difference between a psychiatrist?
Minnelly Vasquez:
Oh yes, a psychiatrist. Left out my friend psychiatrist. But psychiatrists, some of them do provide individual mental health counseling, but majority for focus on medication, medication intervention, and they'll work with a psychologist or social worker, who is an LCSW, to be able to provide the right medication to the patient. But majority of the psychiatrists just focus on medication management in regards to mood, but some do provide individual therapy.
Rachel Byrne:
Okay. So really looking at a team approach is ideal. We've spoken about that already today, thinking about, well, how do you have a team approach between your specialist who is looking at cerebral palsy and that management, and now thinking about who is going to be your person within mental health, but it sounds like a social worker can be a really wonderful person that can connect back together. Cause as you mentioned, the systems change and actually thinking about sort of the management of all those different pieces, is that sort of how you see sometimes a social worker can be really powerful and can be there to actually help you advocate as well?
Minnelly Vasquez:
Absolutely. I think that one of the things that I particularly love when it comes to social work and working with the CP community, is that I look at it as like I'm a partner. I'm a partner of whether you are advocating for yourself in this situation of like, you can come to me for tips. And actually now that I think about it just happened yesterday where somebody called me, and was like, I'm struggling with this. Can you provide me some tips on how to advocate for myself in this particular situation? And we worked through it and then I also gave them some insight tips of like, hey, this is how this agency thinks. And when you say this, this is what they think, and this is how they hear. So in some odd way, we are a translator of social services to the CP community.
Rachel Byrne:
Well, it's that broader aspect as well. Right? So mental health is one part of obviously the different services that you provide, but it's a much broader sort of look I suppose, at the whole system and making sure that support system is provided as well.
Minnelly Vasquez:
Yes. Yes. With psychologists, one thing that I'd like to add is another thing that they're really great at is they're also neuropsychologists, where you can do a cognitive testing, where they can look at your brain and a particular battery that is being administered will look at, okay, this is where your attention is being impacted. This is where your focus is being impacted or your insight in judgment. So that's another piece that psychologists do that us social workers can't do, which is why we're so lucky to have them as part of the team.
Rachel Byrne:
Yeah. And I think there are things that if families are listening, probably different things that maybe had been assessments throughout at different stages of your child's life, or if you're an adult, even your adult life. And that, as you said, these assessments and testing are actually really valuable tools because it can start looking at going, okay, actually, your attention's really good, but maybe the processing is where things can be difficult and things like that, and can tell you a lot. So, no, I think the final message that I'm getting from this is obviously a multidisciplinary team, finding your home, finding your medical home, finding the place where you feel very supported. As you said, even if it's just one person within that who can help you advocate, who can help be that person to help you navigate the system is just so important. So powerful. And obviously the Weinberg Family Cerebral Palsy Center and everything that you provide there, it's wonderful, but I'm sure we'll get questions. If people are outside New York City, can they come see you?
Minnelly Vasquez:
So we see patients within New Jersey, Connecticut, and New York, for telehealth in particular. But let's say if you're outside of the United States, I mean, outside of, let's say these areas of New Jersey, New York, Connecticut, you'd have to come in, you're more than welcome to come in. We love that people are coming here to visit us. Trust me, all of us we love it, but you would have to come in. For telehealth, it's more New Jersey, New York, Connecticut.
Rachel Byrne:
Sure. No, and I think this is important. And for those that are unsure or they want to reach out to the foundation, we can help you connect to potentially other locations that are more local to you that might have some of these services as well. But Minnelly, just thank you so much for joining us today, thrilled to obviously have you join the team at the Weinberg Family Cerebral Palsy Center, and talk about this really important topic, because I think it's something that sometimes gets pushed to the side, but it is so important to make sure that we are looking after our mental health, whether it be ours personally, or thinking about our family unit as well.
Minnelly Vasquez:
Absolutely. Thank you so much. And just to quickly highlight great resources are betterhelp.com, Headway, Alma, Psychology Today, and a few others that are slipping my mind, but they're really great in regards to finding a therapist that accepts your insurance or that you can start working with, with at least the next month.
Rachel Byrne:
Sure. And we'll make sure we put those all in the comments so that you can link out directly. Okay. Well, thank you so much, everybody for listening and again, Minnelly, thank you so much for joining us.
Minnelly Vasquez:
Thank you. Take care, Rachel.
Rachel Byrne:
Thank you.
Minnelly Vasquez:
Bye.