Advocating For Your Child with Prenatal Substance Exposure

Please pardon any errors, this is an automated transcript.
Dawn Davenport  0:00  
Welcome everyone to creating a family talk about foster adoptive and kinship care. I'm Dawn Davenport. I am the host of this show, as well as the director of the nonprofit creating a family.org. Today we're going to be talking about advocating for your child with prenatal substance exposure. We'll be talking with Jen Wisdahl. She is the Chief Operating Officer at FASD United, and the proud parent to three young adults with FASD. Jen leads the FASD United federal legislative and policy agenda, and works with her colleagues to make FASD united the connecting line between lived experience research policy and practice. Welcome Jen to creating a family.

Unknown Speaker  0:45  
Thanks for having me, Dawn, great to be here.

Dawn Davenport  0:47  
So one of the first and probably the most important advocacy that a parent can do for their child is to get a diagnosis. So let's separate FASD Fetal Alcohol Spectrum Disorders from drug exposure. So let's start with fetal alcohol spectrum disorders. FASD. Why is it important to get a diagnosis of one of the FASD is one of the disorders associated on the fetal alcohol spectrum? Why is that important?

Speaker 2  1:17  
I think understanding number one, as with any disability, knowing what you're dealing with is half the battle, knowing what to expect. And we know specifically with FASD, as with some other disabilities, that the way you parent, a person with an FASD, the way you interact with the way you support a person with an FASD is different from how you may traditionally parent or traditionally work with someone. And the earlier we can get a diagnosis of FASD, the more protective factors you have put in place. Now, unfortunately, that is kind of difficult, because the majority it is.

Dawn Davenport  2:02  
Let's just cut through it is

Speaker 2  2:04  
bottom line. Yeah. But additionally, FASD typically isn't diagnosed until a person is older, because there is a battery of cognitive testing that they go through that really isn't available unless they have the sentient facial features of FAS fetal alcohol syndrome. Most people with FASD, don't get diagnosed Intel between the ages of 10 and 14. And that's the norm.

Dawn Davenport  2:28  
Is that because it's only at that point that the concerns are growing? Or is it because of the lack of diagnostic facilities and people who are able to diagnose? Or is it both?

Speaker 2  2:42  
It's a spiderweb of issues, quite frankly, it's, you know, a lack of knowledge. Often children will be screened at birth for substances, for drugs, but they won't be screened for alcohol, the conversations might be had with mom or the pregnant parent, about substances or drugs, but that conversation won't be had about alcohol. And so it's almost seen as a bit of an afterthought. And then because of a lack of diagnostic capacity. And again, right around grade four, right around the fourth grade is when things turn from concrete to abstract. Yep, we see a lot of people start to struggle. Although, you know, we're currently doing a survey of families and people with FASD, looking at the education system, and where things kind of fell apart. And the vast majority are seeing right now preschool,

Dawn Davenport  3:36  
recently, third grade to second and third grade. Because at that point is when the higher level thinking is expected, you're supposed to really around third grade start being able to read for knowledge as opposed to just reading so you can say the words, and that you're expected to take the information that you're given in school and apply it. And that's where we see our kiddos struggling. So yep. When you said fourth grade, I was thinking that was a little late. So that's interesting to me. But fourth grade would even be more more so than then. Yeah, fascinating. So with drug exposure, depending on the drug, the child may be born dependent. And so that is something that we can note in the medical records. It's something that we can see now, not all children who have been exposed to drugs are going to be born dependent. Some drugs do not cause dependency such as that. And other times for whatever reason, if the mom has not used the substance, depending on who you talk to, let's say six to eight weeks of delivery, the fetus has gone through withdrawal in utero and you are not going to necessarily see it. But we also know that neonatal abstinence syndrome, so it's obvious for those children. Is it obvious for children who are exposed to alcohol at birth?

Speaker 2  4:53  
Not necessarily sometimes it can be absolutely if they have the facial features will clear indicators but now It's only about 10% of the people with FASD.

Dawn Davenport  5:03  
Right? And infants, it's really hard for newborns, it is very hard to distinguish between the typical newborn face and a face that is showing the dysmorphology associated with alcohol exposure.

Speaker 2  5:16  
Absolutely, it really is. And that's where some of the challenge lies is that unless you know that there was a history of prenatal alcohol exposure, and those conversations were being had prenatally, a lot of times it gets missed. And it seemed to that in our society, because alcohol is legal, it's seen as less than, and with some parents, it seen as oh, gosh, that's even more shameful if I wish it's not if I drank during pregnancy, than if I use substances. because drugs are a disorder disease, we still have a lot of stigma that comes with alcohol use and alcohol use disorder. It's fascinating listening to the conversations around that because neither are good for the baby. Some of them used in combination are even worse. But alcohol typically gets left out of the conversation in lieu of the conversation around drug use or drug exposure. Because it's easier to find, it's easier

Dawn Davenport  6:18  
to find, and I think you hit the nail on the head when you said, Because alcohol is legal. I think that this misconception is fading. However, there has been a misconception in the past that alcohol does not cause the birth defects in long term learning and behavioral issues that drugs cause. And for our audience, there's a faceful of laughter on the other side of this here, and nothing could be further from the truth. It is actually alcohol. That causes as Jen said, none of them are good for a baby, none other than good for a fetus. However, alcohol causes by far, the most significant, which is so interesting. Let me ask you a side question. Before we come back to the diagnosis. Have you seen our has the research shown that there has been an increase in alcohol use during and since the pandemic?

Speaker 2  7:09  
So interestingly, pre pandemic, the rates of alcohol exposed pregnancies, as reported by the CDC, went from one in nine to one in seven. Right. So one in seven pregnancies are reported as alcohol exposed, then that self reporting, but from there, since the pandemic, what studies have shown is that there was a 41% increase in binge drinking among women of childbearing age. I don't know about you, but I don't know if I'd want to be a kindergarten teacher in the next couple years. Because any amount of alcohol can cause an FASD, including prior to recognition of pregnancy. So you know, this is the other part we forget, you're out on a girls weekend. And there's some binge drinking happening, and you don't know you're pregnant yet. Right. So this is where FASD can also live and also happen. And as a matter of fact, that's where we see a lot of the alcohol use is in middle age, higher socio economic status, well educated white women. That's kind of the core group that's doing the binge drinking. And so I think we're gonna see a lot more of FASD outside of the adoptive foster circle in coming years because of that.

Dawn Davenport  8:26  
I think that's such an interesting point. And we do know that both depends on who you speak with what the exact percentage but on the children that creating a family service, foster adoptive and kin, anywhere between 70 and 90% of those children have been prenatally exposed. Alright, now let's go back to diagnosing Okay, so, in the US FASD is not a diagnosis. It is an umbrella term that includes a bunch of different diagnoses. Talk to us about what would be included? How do you get a diagnosis and what could you be diagnosed with? And do they align themselves on a spectrum from worse to least worse?

Speaker 2  9:06  
You know, and interesting, depending on who you talk to about that there are currently 10 different diagnostic methodologies widely in use in the US. So there is no one gold standard

Dawn Davenport  9:17  
for diagnosing children who are all along the fetal alcohol spectrum. Exactly,

Speaker 2  9:21  
exactly. The one diagnoses that most are aware of is fetal alcohol syndrome, and fetal alcohol syndrome, some considered to be the most extreme. However, we also know that people with fetal alcohol syndrome tend to do better long term than people with other diagnoses on the FASD spectrum. And here's why. People with fetal alcohol syndrome a everybody's heard of it, right? That's something you've heard of B they have and sometimes they're very subtle. You'd never even know that they have facial features. So it's something identifiable right So in some states, you might be able to qualify for services with fetal alcohol syndrome, but you will not qualify for services with P FAS or alcohol related neurodevelopmental disorder or neurodevelopmental disorder, prenatal alcohol exposed or static encephalopathy, alcoholics exposed, any of these other diagnoses that are in other countries considered an FASD. But in the US, we have separate names for them. And the people who don't look like they have a disability, the majority of people with an FASD aren't intellectually disabled, they don't have an intellectual disability. And so they don't qualify for many of the services and supports. But if you were to look at their adaptive function, if you were to look at their executive function, their ability to live and navigate with safety in community, those areas are highly impaired, but there's no support, because they don't have either the FAS diagnosis, or the intellectual disability to accompany it.

Dawn Davenport  11:07  
If you were able to go to a doctor, I'm going to talk in a minute about where to get a diagnosis. But if you were able to get a diagnosis for any of the things you mentioned, neurobehavioral disorder associated with prenatal alcohol exposure in DPE. Hang on everybody, you're going to get an onslaught of acronyms here, alcohol related neurodevelopmental disorder, AR nd fetal alcohol syndrome, FAS, or partial fetal alcohol syndrome, PFA s, and then a whole host of others, if you were able to get a diagnosis of one of those will not provide you with school services are other services for your child.

Speaker 2  11:49  
No, not in most states. And that is part of the challenge. And because in most states, waiver services support services are tied to either certain diagnoses or IQ. And so that is a major challenge for our population, to be able to get access to services and support. You add to that, you know, FASD occurs at a rate of as many as one in 20 school aged children in the US. One in 20, that is a child in every classroom, that is a kid on every ball team, it grows up to be a person in every workplace, right? Because this doesn't go away with time, you don't outgrow FASD brain

Dawn Davenport  12:31  
damage, you don't outgrow and brain damage is what it's called shift

Speaker 2  12:34  
and the body damage that goes with it too, because anything that's developing along the midline, heart, lungs, endocrine system, those things all tend to be more impacted as the person with FASD agents. Right. So going back to that one and 20 number, that's double the rate of autism in the US. Absolutely. And our schools do not have any information about it. If you look at the IEPs, right, so I EPS you've got your categories under IV EA, all your categories there. FASD is if it's recognized, it's typically recognized under other health impaired, or it's recognized under traumatic brain injury. But there are only a handful of states that are set up to do that. And so really, you're getting an IEP or a 504 for your child, based on other things that are going on typically ADHD, if you can get a dual diagnosis of autism and FASD, you can get that. So it's really similar to neonatal abstinence syndrome. In schools, they don't really have the capacity set up to look at how you would support these children through the IEP process. Additionally, some of the typical sticker charts rewards, things like that don't work for our population. That's not the appropriate way of supporting a person with FASD. Because that cause and effect thinking is impaired. So you might have them earning based on good behavior. This reward at the end of the week, well, they're just going to be angry at the end of the week when they don't get it because a they don't remember why they were earning it what they needed to do to earn it. And they don't have the ability to maybe maintain their posture in the classroom in a way that would allow them to earn it.

Dawn Davenport  14:25  
Exactly. It's a challenge. Yeah. So we know of families who have said to us, it is relatively easy to get a diagnosis of autism. I know my child was exposed, we have every reason to believe the child was exposed. We believe that what we're looking at is some form of fetal alcohol syndrome, probably not FAS, but probably somewhere along the FASD spectrum. And yet if we get a diagnosis of autism, which my pediatrician can give me, and they don't get all the services I need, so the misdiagnosis sometimes on purpose and sometimes Not on purpose, you could see where they're coming from the problem, of course, is it doesn't help us get the data, we need to be able to say, we need more services for prenatal substance exposed to children.

Speaker 2  15:12  
Well, and additionally, you know, if you're getting the wrong diagnosis, then you're also getting the incorrect interventions. Aba is not recommended for people with FASD.

Dawn Davenport  15:24  
So it works. For some, it does work for some, not for others, you're right

Speaker 2  15:28  
and not for others. And so this is part of the challenge is that a friend of mine who's an FASD, Mom always gives the analogy of you're putting the wrong glasses prescription on the child by giving the wrong diagnosis. Yeah, because those correct supports and things are in place. And two of my three have prenatal drug exposure, all three of mine have an FASD. And they can do great things they are capable of so much, but having that understanding of how their brain works, and how they may look at life, differently, not wrong, just different. The memory impairments that may come with what they're doing, you know, the supports that they may need. You know, these are great people, they grow into amazing adults, but they need that understanding, awareness help and support to be able to reach their full potential. And the right diagnosis can help with that.

Dawn Davenport  16:25  
So how should parents go about getting a diagnosis for their child when they suspect that some of the what they're saying the learning challenges, behavior challenges are caused by prenatal? Right now, we're still talking about alcohol exposure, we're going to shift in just a moment talking about drug exposure, but prenatal alcohol exposure, how do we get that diagnosis?

Speaker 2  16:45  
Step number one is to make sure that in their records, you can find that there is documentation or knowledge of prenatal alcohol exposure, right? Because unless they have the the face, so meaning the dysmorphic facial features, it is very unlikely that they will be given an FASD diagnosis. So that's one thing is really looking through the records, if you're an adoptive parent, and seeing if that's noted, if you are with your kiddo in the hospital, when they're a newborn, making sure that it's noted on their chart that they're asking if alcohol was, you know, even prior to recognition of pregnancy was their alcohol exposure.

Dawn Davenport  17:26  
So it's a medical records you want this information to be included.

Speaker 2  17:30  
In you know, in some cases, I've heard of clinics accepting also like, you know, Grandma witnessed at a baby shower, or, you know, family information in there was a family where the pregnant mom was pulled over for drinking and driving. So that record could be used. But you do need to have that solid knowledge that there was alcohol exposure. And then talk to your pediatrician, the American Academy of Pediatrics has some great toolkits and trainings out there on FASD, and how to how to look at it, and how to even diagnose and support. However, in most states, they're going to refer you to a specialty clinic to do that diagnosis. And hopefully your state has one, they don't exist in every state. So there are some that end up crossing borders to get there, which is, you know, unfortunate, but, but the reality of our situation. And then, depending on the method that you use to diagnose, you could either be talking to a geneticist, a developmental pediatrician, you might be looking at a multidisciplinary team, you might be looking at a psychologist, it just really depends on what method they're using to diagnose in your state or in your area.

Dawn Davenport  18:42  
Gotcha. Most pediatricians don't feel comfortable. But developmental pediatricians are clinical geneticists are usually but not every developmental pediatrician. And not every clinical geneticists. The FASD, United website does have a list of facilities. So I would recommend going there. And Jen, give us that website,

Speaker 2  19:02  
www dot FASD united.org. But even more importantly than that, we have a program called our family navigation program. So you can call or email or contact us off the web at any time and request a list of diagnostic clinics. Let's say your child is 1618. And they need a diagnosis. You know, that might be a different list of clinics. So our navigators will go through and find the resources that are available to you in your community and send you a tailored list. And if you need to talk about it, they're all parents and caregivers of people with FASD. So if you need some peer support, or to have a more in depth conversation, that phone line, it's an 800 number, and it's open from 9am. Eastern to 10pm. Eastern Monday through Friday. So anywhere in the country, you don't need a referral just call us we'll get you the information.

Dawn Davenport  19:58  
Excellent and support to selling If you're talking to somebody who gets it for nothing else. Alright, now let's talk briefly about what diagnoses are available for a child who has prenatal drug exposure? And how does that differ from getting a diagnosis for EDS? FASD?

Speaker 2  20:16  
Really they are, you know, considered, although they're often intertwined, to separate things, right, you've got your natal abstinence syndrome, you've got neonatal opioid withdrawal syndrome now is as they're calling it now. But most of those diagnoses are made at birth. Most of those are happening in the hospital, their testing, the majority of those are happening right then and there. And if they're not, then that's something that's usually picked up by a pediatrician later on when those conversations are happening. But we know it is far easier based on the criteria of those diagnoses, to get a diagnoses of drug use, than it is to get a diagnosis from alcohol use, because it's that stigma factor, right? It's a known thing. And it's something that you can test for, as well, you know, they can test for prenatal drug exposure,

Dawn Davenport  21:11  
even without withdrawal symptoms, they can test the Mykonian or they could test the moms. So you have something physical, which was alcohol, very seldom do you have something physical?

Speaker 2  21:21  
Absolutely. And you can test for blood for alcohol, but it's only during a certain period, you can only Annalee there's limitations to it, and most panels won't run it, they'll run the the drug exposure, because that's where the priority is. That's where the funding is.

Dawn Davenport  21:37  
Yeah. And again, that is terribly unfortunate. But having a diagnosis of prenatal drug exposure, or neonatal abstinence syndrome are a neonatal opiate withdrawal. Will that get you any additional services in schools? Or is it similar to being diagnosed with one of the fetal alcohol spectrum disorders

Speaker 2  21:59  
is, again, it faces the same challenge that we face with an FASD. Where it can be more helpful is that you're a lot more likely to get buy in from the school system, if you mentioned drugs as opposed to alcohol. Because it backwards. Think of the reaction though. I mean, it's, you know, if you're talking to someone in the school system, they're thinking, Oh, well, I might have been drinking before I knew I was pregnant, or, Oh, I go home and drink. You know, like, alcohol is so steeped in our society, that it's hard to recognize when there's issues from it, it's harder to recognize when there's use use from it when it's something you yourself use, right. So it can help. But again, it's not listed as any criteria under ID a, any of the drug exposures aren't listed there. They're not okay. Yeah, no. So it can be a challenge if your state interprets it, because each state interprets it a different way. There's no you can't go from one state to the other and have it be exactly matching. So how the state interprets ide a is going to really impact whether you're able to get services for a kiddo with drug exposure or a kiddo with prenatal alcohol exposure, most of your birth to threes, will take a kiddo with that. And you can argue that developmental preschool or the early childhood education provided by the school districts, it's governed by ID A, the school districts are required to find kids this is through child find find kids with disabilities. So if you mentioned that your child has a diagnosis of a disability, that is a way in through the preschool route, but it may not follow you through the remainder of their school.

Dawn Davenport  23:47  
And IDE. A by the way, it means Individuals with Disabilities Education Act ide a

Unknown Speaker  23:52  
thank you for clarifying. Sorry,

Dawn Davenport  23:55  
that's okay. And that is where you would get some of the IEP and the 504. I think actually 504 comes from the ADEA. Yeah. So that's how you get some of your services from schools. I hope you're enjoying today's conversation with Jim wisdom on advocating for your child with prenatal substance exposure. If so, Could you do us a favor and tell a friend about what you've learned? When you listen to this creating a family.org podcast? It's what we do. And the podcast primarily grows through word of mouth. So please use your mouth to help us grow. Let your friends and family know about this podcast. Thank you. Okay, another opportunity for parents to advocate for their child is in the school system. So what are some of the typical issues a child with prenatal substance exposure to alcohol or drugs and many of them there is an and there they were exposed to both what are some of the issues they may face in school?

Speaker 2  25:00  
Although some of the issues are hyperactivity, again, lack of the ability to interpret cause and effect, or even natural consequences, that part of the brain can be impacted. So knowing that if I don't do my homework tomorrow, or if I don't do my homework, or work on this project over time, I'm not going to be done on time. So an inability to kind of manage time manage self, we get a lot of sensory things in our populations. So the need for big muscle movement, the need for energetic play, you know, in one of the diagnoses for FASD, they talk about the child exhibiting attributes of being driven as though by a motor. So they're very, very active, right. And there are some that are and some that aren't, you've met one person with FASD, you've met one person with FASD, or prenatal drug exposure, but the high level of activity, some challenges with boundaries, challenges, remembering more than one or two step directions, challenges with memory. So for example, my son, we taught him how to tie his shoes, right? He was, in the first grade, we were teaching them how to tie his shoes to go to school. And he mastered it, and he mastered it at home, but couldn't remember how to do it at school, because it was contextual learning. And a week later, he forgot how to do it. And we had teach them all over again, right. And so gaps in memory, sensory issues, things like that, they're going to need support within school. Some of our kids have very different metabolisms, they get hangry a lot easier. So planning in advance for that learning disabilities are highly prevalent in our population. So having supports in place and looking for those things can be helpful.

Dawn Davenport  26:47  
So what should you be asking for? Your options are and IEP are for the most part, I'm generalizing, but a 504. So what type of interventions and what should you be pushing for as a parent of a child with either FASD, or prenatal drug exposure?

Speaker 2  27:06  
Personally, it so depends on the child. But some big key things are supervision, they may require extra supervision to be able to maintain the boundaries that the school sets, one I always recommend is that recess, and opportunity for big muscle movement is never taken away, they need that mental and physical break. Another one that I would highly recommend is no homework prior to middle or even high school. And that's because their brains are still developing. And they are trying so hard to do as best as they possibly can. In an environment, that is a major challenge. By the time they get home, they are done. And a lot of contextual learning happens, right? If they learn things one way they need to learn it that one way. And so if you as a parent are trying to teach it to them in a different way than how the teacher is teaching them, that causes a lot of confusion and anger and stress. And in our kids, the 20 minutes of homework that sent home can take an hour and a half to two hours. And it's just not not helpful. So definitely recommend that they test for adaptive skills when you're asking for them to be evaluated for an IEP or 504. Ask them to test executive function and adaptive skills, because they don't always do that at the school setting.

Dawn Davenport  28:35  
What do you mean by adaptive skills? Explain that to our audience. adaptive skills is

Speaker 2  28:39  
again, the ability to navigate your community with safety. How do you adapt to your environment? How do you handle the day to day living activities that allow you to participate in society, and measuring those can be extremely helpful,

Dawn Davenport  28:57  
because it will usually show that the child is behind and then there can be some interventions and supports that are put in place to help

Speaker 2  29:05  
them things like OT, things like speech and language support for executive functioning. All of those things can be very helpful, provided that the provider understands FASD or prenatal exposure and what they're dealing with.

Dawn Davenport  29:21  
Exactly. I'm going to interrupt here for just a second to give a brief shout out to creating a family's interactive training support group curriculum for foster adoptive and kinship families. It is a terrific resource. If you are someone who is involved with training any of these resource parents or involved with running a support group or attending a support group, I strongly urge you to check out this curriculum. It's intended to be a turnkey curriculum that makes it easy as possible to run a high quality training or support group. Check. Now at creating a family.org, and then hover over the training tab and then click on Support Group curriculum. So another way parents can advocate for their child, and it's called different things in different states, waivers, Medicaid waivers, they have different names and criteria by states. Can you talk to us some about what that is? The challenges of getting there, first of all the benefits of getting this waiver, and then the difficulty in getting the waiver.

Speaker 2  30:31  
So again, every state in this is very similar to the IEP program. Every state has a different way of interpreting how they grant waiver services. And the waiver services can be different by state. So you know, looking first in your state to what waiver services are available waiver from what waiver services is how state disability services are referred to in general. So for example, the registry of unmet needs and additional work, right. Those are your waiver services in your state. This

Dawn Davenport  31:07  
is how disability services are allocated is what it takes, right. And it's called waiver services. And then in each state, we'll call it something different, but I think most of them probably would know, if you say waiver services for disability,

Speaker 2  31:22  
disability waiver services would be a way to look it up. I know that there's some organizations like the ark that really specialized in walking people through that process of getting waiver services, there are not FASD, or prenatal substance exposure specific waivers in most states that I am aware of at this point. But some of the things you could get qualified for would be respite. Respite Care is a big thing. If you have a child who moves as though driven by a motor. Going back to that criteria, you know, having some respite care as a family can be very helpful. Things like equine therapy can be covered camps can be covered. Sometimes housing, things like that can be covered for your loved one with a disability through that program. But again, each state's criteria is very specific and different. And so looking at where you might find that common ground with the waiver services, doing some research into that is really an area of great advocacy for parents. Because once you have those waiver services, it can also help you access disability benefits down the road once they're in abstractly.

Dawn Davenport  32:32  
And so it's especially important if you think that your child will need supportive services into adulthood. This is one way to get that I know a number of states. Again, as Jen has just said, it's different from each state. But I know a number of states, the waiting list is huge. We're talking many, many, many, many years, we're not talking six months, we're not talking six years, sometimes we're talking even longer than that. And as far as I understand Most states allow you to be putting the child on the waiting list even as they're a child. Yes. So there are some reasons why you might want to act sooner rather than later. Why are people with fetal alcohol spectrum disorders, or prenatal substance exposures not automatically included? Why did they sometimes have a hard time meeting the criteria?

Speaker 2  33:25  
In many cases, the criteria set by IQ. So that can be absolutely a barrier. You know, we know, for example, that in people with FASD, the vast majority of people with an FASD have an average to above average IQ. So that's not the area of impairment for them, but to access services in many states. That is a cut off. And I know there's a lot of states that are moving away from that. But again, it's a state by state thing. So that's part of it. And then I think the other piece is that, you know, we've done a lot of looking at how do we prevent drug exposure? How do we prevent alcohol exposure? You know, that's really been, particularly in the FASD space, the majority of federal funding and even state funding has gone towards prevention. What we've overlooked in that funding and in that policymaking are the people who are living with that disability.

Dawn Davenport  34:23  
Yeah, I couldn't agree with you more to be there's absolutely no competition between prevention and support for the individuals who are living with the damage caused by prenatal substance exposure. It's not a competition who could argue against prevention, that's obviously but we do need services for those people who are the unintended victim of substance abuse disorders, including alcohol.

Speaker 2  34:48  
Well, I think it's too if people with FASD and prenatal substance exposure were visible and represented in our communities. When we're talking about disability. You Have people with FASD were known to be as common, you know, is known to be as common as autism or Down syndrome or any of the other disabilities that we know very well. What would that do for prevention efforts? How would that impact prevention efforts?

Dawn Davenport  35:18  
Absolutely, absolutely.

Speaker 2  35:20  
And I think that's a question we need to be asking is, you know, I don't think they're mutually exclusive programs. I don't think there's some

Dawn Davenport  35:27  
things that need to be tied together, they are tied together,

Speaker 2  35:31  
and then looking too at the way the language of prevention is used, and what impact that might have on the people with that disability? How does a person with FASD feel when they're told they're preventable?

Dawn Davenport  35:44  
That's an interesting point. I have not thought of that. So this is where

Speaker 2  35:49  
we have some thinking, I think it really to do on how do we give appropriate messaging, and support more importantly, support for pregnant people who may have a substance use disorder may have an alcohol use disorder, or maybe, you know, just a parent who's pregnant, and they realize, oh, my gosh, I was pregnant, and I went for that girls weekend, I, you know, was at that event where I drank and my child may be exposed? How do we make it a safe space for them to be able to disclose that information so that their child can benefit from having an early and accurate diagnosis? Because there are programs out there for people with prenatal alcohol exposure, and prenatal substance exposure that are evidence based to support their needs as they grow? But if you can't get access to it, because we don't know what's going on, therein lies some of the problems. So yeah, it's a fascinating Yeah,

Dawn Davenport  36:51  
it is, it is more complex than you think. Yes, creating a family is in the midst of trying to get a training evidence base right now that would help parents and child welfare staff be better able to know how to help these kids thrive. Hey, guys, have you heard about our free courses, they are in our Online Education Center, they are free to you as a gift from the jockey Big Family Foundation, they're supporting us and being able to offer you these free courses, there's 12 of them, they come with a certificate of attendance, if you need it, you may not. They're terrific courses, check them out at Bitly, slash j, b, f support, that's bi T dot L, y slash J. B F support. All right, the last advocacy I want to talk about, and arguably It might even be the most important is that is what can we do to get the FASD respect Act passed? First of all, tell us what it is. And then tell us what we can do. Even if you don't have a child that you think is impacted. This matters. For all of us. These people, some of them children, some of them adults exist, and we need the support. So go ahead. So

Speaker 2  38:07  
just to start off with federal funding right now for FASD consists of $11 million at the CDC for surveillance and prevention. There is $30 million at an AAA, which is the National Institute of alcohol and alcoholism, and they change the name and I still can't get it straight in my head. But 30 million in research dollars, looking at FASD. There is a $1 million pilot program at HERSA. To look at prevention and diagnosis. That's it if you compare and contrast that with any other issue we're facing as a country, that's a drop in the bucket. Any authorization for programs that might support knowledge translation between research and practice? So taking all that great researchers done and putting it into practice,

Dawn Davenport  38:56  
we so need that. Well,

Speaker 2  38:58  
that's all expired. It's gone. It doesn't exist. Right.

Dawn Davenport  39:03  
There is great research. Yes, it may be being done on animals, but we have can learn a lot and some of it's done in humans. We need to Yes, go ahead.

Speaker 2  39:12  
So that yeah, the the knowledge translation piece, any funding that was there or any statutes that were there to support authorization for that have expired long since there used to be a center for excellence for FASD that worked on that knowledge translation piece between research and practice that went away. Why because the authorization expired and because the agency that it was housed in didn't understand how it connected to their prevention efforts. And FASD and prenatal drug exposure are such nuanced topics. They don't fit neatly into a bucket. They don't fit neatly into a neurodevelopmental disability, because they're also physical, and they're also mental health. And they're also like they they flit across All these categories, so finding a home can be a challenge. So that went away. There used to be funding that went to states to support work in states and have a state coordinator on FASD. And really push things forward taking that knowledge translation piece that the Center for Excellence did, and putting it into practice in states that expired it. So what the FASD respect act is, is reauthorization of those programs, but looking at prenatal substance exposure in all forms, FASD and prenatal substance exposure, and reauthorizing those programs and reinvigorating them, and kind of relabeling them with what we know now, about FASD, as opposed to what we knew back in the 90s, when this legislation was initially passed. And so last legislative session, we introduced the FASD respect act. And it came this close to getting past I know,

Dawn Davenport  40:56  
yeah, so guys, we're, we can do this again, we are close. And it's typical that you have to work, it gets really close one year, and you don't push it across the goal line until the next year. So yeah, if you were talking to, and you are talking to an audience of people who care, what do you want them to do? What action do you want people to take?

Speaker 2  41:18  
So here's where I pull out my tic tac dance. And it's a shame this is an NP video that otherwise you can see it. Every state has two senators that represent the entire state, and one representative or one congressperson that represents the area in which they live. What we would like you to do is reach out to your two senators, here comes the Tick Tock dance and one rep. You can't see it, it's far more money on screen. We need you to reach out to your two senators and your one representative and ask them to support or co sponsor the FASD respect act. And here's how we do them on our website on FASD united.org. Under the policy page, there's a button for the FASD respect act. If you click on that link, it will take you to a year step one here, step two here, step three, in setting up a Zoom meeting with your legislator. And here's a template for how to get the meeting, here's documents to send to them on the impact of FASD and prenatal exposure in your state. And then here's who you can contact at FASD. United to set up a practice call to help you talk through what you want to say to your legislator when you meet with them. And also do you want to schedule to have some experts there with you? Do you want somebody from FASD? United there with you on the call? Do you want somebody from creating a family there on the call? Well, I would

Dawn Davenport  42:42  
defer to you.

Speaker 2  42:45  
It is a great way to put policy into action and take some actionable steps to get this done. And you know, in the past, we used to ask for people to write a letter, write an email, write a letter, and that is an easy thing to do. However, in the past, when we asked that the most co sponsors we ever got for this legislation, were nine between the House and Senate. Since we've asked people to start doing these zoom meetings. last legislative session, we had 74 co sponsors in the house and 10 in the Senate. So this works. And it works on many levels, because we may end up not meeting with the senator or meeting with a congress person, we might end up meeting with their legislative assistant. But guess who goes on to be a senator, or Congress from my

Dawn Davenport  43:33  
experiences that I almost never get to meet with the representative? Yes, Senators almost never. But who did they take their information from their staff and their staff is keeping track of how many people are asking for this. And so don't be discouraged if you only talk with their eight, particularly for the Senator.

Speaker 2  43:51  
Absolutely. And, you know, we recommend to that if you have a question or you get stuck, just call us pick up the phone. We're very old school that way, pick up the phone and call us. We want to help you can get straight through to me, and I'm happy to help with that to my associate Chris who works with me on policy. I'm going to give out his email address and you can email him directly and get things set up and that's Melfi me l FYI, at FASD. United that org, we really want to be as accessible as possible to support people and doing this outreach because it's not one organization that can get this done. It's not one person that can get this done. If you want to make broad scale policy change, it takes everyone working together. And you know, it doesn't matter if somebody's already talked to your senator in your state. You can still talk to your senator in your state.

Dawn Davenport  44:47  
They often are counting numbers. I mean, they you know, the more people the better.

Speaker 2  44:51  
Absolutely, absolutely. So, the other thing you can do is on our website, we have a weekly newsletter that goes out on all things FASD and prenatal substance exposure, so any new research papers that are dropping any conferences, training, things like that. It's called the weekly roundup, it's ran for like about, oh gosh, the last 15 some odd years. And you can sign up for that. And that'll give you information on what's going on globally on FASD, and prenatal substance exposure. And then on our Policy Center, you can also sign up just for the policy updates, if all you're concerned about is the policy piece. Hey, cool, we can update you on that and where things are going. I know representative Ross from North Carolina just signed on, I believe last week to be a supporter of the FASD respect act. And this is a bipartisan act.

Dawn Davenport  45:41  
One of the few things is bipartisan. Exactly.

Speaker 2  45:43  
There is nothing partisan or contentious in this, you know, the the language that we're using was language that was agreed upon last year by Senator Burr from North Carolina who retired and Senator Murray. So you've got your, you know, conservative and your liberal coming together to get this language

Dawn Davenport  46:01  
truly bipartisan. And I will do a shout out for the FASD United newsletter. It is one of the better newsletters out there. And I'm a bit of a newsletter snob and is one that I've read every single time. In fact, there's probably I'm behind on emails right now. I bet I have three of them and I won't get rid of them. Because I want to read them. It's excellent. And you can again go to their website, which is FASD united.org. Thank you so much, Jen wistow with FASD united for talking with us today about how to advocate for your child who has prenatal substance exposure. I truly appreciate it.

Unknown Speaker  46:41  
Thank you for having me, John. I appreciate the time.

Dawn Davenport  46:44  
Hopscotch adoptions has been a long term supporter of creating a family. We are so appreciative of their support both of the resources we provide at creating a family.org as well as this show. Hopscotch is a Hague accredited international adoption agency placing children from Armenia, Bulgaria, Croatia, Georgia, Gov piano, Morocco, Pakistan, Serbia and Ukraine. They specialize in the placement of kids with special needs including Down syndrome. They also specialize in kinship adoptions. They place kids throughout the US and they offer home study services and post adoption services to residents of North Carolina and New York.

Transcribed by https://otter.ai