Behavioral Health Services in AZ FINAL
my name is david jefferson i am the founder of parent support arizona and we’re an advocacy agency that provides support to families across the u.s today we’re going to be talking a little bit about how do you maximize your experience in the behavioral health system for many of our children they have a variety of different needs so depending on where your family is at this may or may not be directly applicable but the one thing i’ve learned as i’ve done this work it always ebbs and flows there’s times where my children are a really good place and we need minimal services and then there’s times where i feel like i’m so behind because things have escalated and i feel like we need to get help immediately so today we’re going to talk a little bit about that the other thing we’re going to do today is we’re going to share a lot of information hopefully this information is going to be really relevant for your family but if not i have a feeling it may be relevant for people in your circle one of the things i’ve also learned is that sometimes i’ll hear a presentation or i’ll talk to somebody and i’ll think that’s good information and then someone will reach out to me on facebook or i’ll be talking to a friend over a coffee and i learn that they’re struggling with something that might be uh connected to what i’ve learned so i would just ask that as we go through this presentation today if there’s things you take away share it share it with your friends it’s a small community of parents who walk this path of having children that have exceptionality and i think that we have to support each other so i’m going to tell you a little bit about parent sport arizona in in 2012 i worked in the corporate world i didn’t do any kind of advocacy aside from my own children but i’ve been helping families i’ve been connected in my community and people kept saying you should do this you should go and start something that can have a broader impact and so i started here at school arizona uh when i started i really had three focuses i wanted to provide direct advocacy support to families i knew that the different state systems could be really complicated uh they were difficult for me to understand and navigate and so i wanted to be able to be there to help families who were trying to navigate it i knew i wanted to be able to consolidate resources because in my journey with my children who i’ll talk about in a minute um sometimes it was really confusing somebody would say you really need to go get your child speech therapy because they’re struggling in this area okay great and then i would go online and there’s like a thousand speech therapists and which one made sense for me and based on my child’s needs and then you’d call and some would say oh that’s not what i do others would say oh that’s what i do but i don’t have any openings and so i learned that it needed to be simpler for people to access resources and i don’t know what each of your experiences are but my guess is at least once in your journey somebody has said to you uh we don’t have capacity we we can’t take your kid at this time have you ever heard that i was having a conversation with my child dvd worker last week about this same issue it seems simple our children have needs and the state systems are designed to meet those needs but sometimes it’s not that simple sometimes there’s uh there’s a barrier to being able to access those services so i wanted to be able to have those resources and i wanted to just be able to support families i think it’s a difficult journey and as we go through this i think parenting in and of itself is difficult i think it’s gotten more difficult as time has gone on societal norms have changed i look at how my parents parented i think they did the best they could with the tools that they had but the way i parents is pretty different from the way they parented the way i have to parent my kids is pretty different um i don’t know that my kids would react um in a positive way to some of the approaches that my parents use and so it’s always this constant learning and i wanted to be able to support families um i’m a father of five uh my four oldest children i adopted through the foster care system and so i had this desire to wanna be involved with children i did not have a desire to have five children i’m not even sure i had a desire to have children when i first started my journey i thought there’s lots of kids that need help we can help for a little bit then they can go on and they can either go back with their birth family or they can find permanency it just didn’t work out exactly the way i thought as my children got older each of them um had needs that were identified and my oldest son is grant grant is 16 years old when grant was born he was a meth baby and so we knew that there was going to be some things that we were going to deal with he also had some health issues that popped up as he got older his presentation changed eventually he was diagnosed he’s twice exceptional so grant is gifted but he has some pretty significant adhd in that we joke that grant will one day cure cancer he will write it down and then he will lose it will not remember where he wrote it down and that that is great morgan in the middle is my oldest daughter morgan’s also 16. morgan has muscular dystrophy and cerebral palsy she is my fighter morgan has never seen adversity that she will not overcome she has never seen an obstacle that she won’t work around morgan has a variety of needs that are really really complex though so there’s like a lot of medical stuff going on any families in the room that deal with medical stuff and if you think about parenting and just the challenges that we face trying to figure out how to meet the needs of our kids and then you throw in this magical stuff that’s even more complicated because i think as parents we feel pretty helpless because the medical stuff isn’t stuff that we can uh that we can easily address and so that that’s a little bit about motivation and then uh delaney and avery are twins and uh delaney and avery are just amazing young ladies they’re both 14. delaney has ocd because she has had things in a certain way she has a lot of great skills i i think one day she’s probably going to be the ceo of a fortune 500 company she’s got great leadership she’s very very aware of everything but she struggles with things aren’t just so she struggles with changing her routine she struggles with the unexpected things that pop up anybody here have kids who struggle with unexpected changes or routines and those are some challenges that we’ve faced for a long time and i know a lot of other families face that avery’s my youngest daughter avery has fetal alcohol syndrome and fetal alcohol syndrome is a pretty tough one because it really does change the way the brain is developed and um so for avery her whole life is one impulsive uh action on top of another impulsive action so think about adhd and then remove all of the filters so avery has a thought it reacts on the thought she’s an amazing kid though she has a ton of strength she does a ton of things that make her just an absolute amazing amazing young lady and then my youngest is jackson and as i mentioned earlier my four oldest children were adopted through foster care jackson was biological did not know that we were in a biological child that was a surprise for us jackson jackson has a lot of great strengths he also has adhd probably the most significant adhd i’ve ever experienced far more so than his siblings and i do this work i work with about 350 families a year his adhd is probably one of the most significant i’ve seen and so for jackson uh a really really bright kid he struggles a lot with with focus uh he always catches what’s going on but he really struggles just to sit still to attend and so things like school and conforming to norms in the community can sometimes be challenging i got into this work because my children had various uh strengths and various struggles as we were moving along through the through these different state systems i started out my work doing a lot in the education system and as my kids got older and we started seeing different behavioral concerns pop up i figured out pretty quickly i needed to learn about the behavioral health system i was pretty slow to learn about it though so as my children turned five six eight depending on which kiddo they started having some struggles and uh we had a state worker that we could contact and so we connected with them and i said hey my kids are really struggling um maybe we need to get therapy maybe we need to get a behavior coach and uh pretty consistently i was told that those weren’t options for us uh that agency didn’t have any behavior coaches available we didn’t have therapists uh kids who are under 12 don’t really benefit from therapy and i heard all of those things anybody ever heard any of those things as you’ve tried to seek support for your kids and so i probably did what many of you did i said okay so we’ll do it on our own and so uh between 2008 and 2014 i i spent a small fortune on behavioral health services for my kids uh because we dealt with things like adhd and anxiety and obsessive-compulsive disorder we dealt with some of the trauma we dealt with those things as a family and i knew i needed to help my kids and if the people who i went to at the state told me that they couldn’t help i just did it and one day i was at a meeting with a client she had said hey can you come to this cft meeting with my family and so i said what’s what’s the cft meeting anybody here ever been to a cft meeting so a cmg meeting yeah what is it what’s that so cft meeting is a child family team meeting and it is the cornerstone of the state’s behavioral health system so in the behavioral health system the thought is that if you get a group of people together who understand that this the kiddo and who understand the resources we can match the two so if there’s a need we can figure out what resources we need to bring to bear to meet the need i’d say a cft meeting functions in a similar fashion to an iep meeting for the school where you get a group of folks together i think the main difference is it’s supposed to be a whole lot more collaborative and some of the barriers that sometimes families run into in the school system aren’t supposed to exist in that process it’s supposed to be really straightforward we identify the team members we identify the needs we figure out what’s clinically appropriate we go and get services and i sat in this meeting with this family and sadly i had had children in the behavioral health system from 2008 until 2014 and i i don’t know that i’ve ever been to a meeting like this and as this mom was talking and she was talking about the array of services that were available i was shocked they were giving updates on all these things there was somebody from the art therapy program there and they were talking about art therapy and there was a youth mentor and they were talking about youth mentoring and mom had somebody who was assigned as a family support partner and we’re going through this whole process and i’m walking out of this meeting thinking who are all these people and where on earth did you get all these services because for my family we got absolutely no services other than what we went and paid for and so i asked the mom if i could sit down with her and she could explain to me what on earth just happened and she walked me through the state behavioral health system in a way that i had never experienced it she talked about all of these services many of which i thought were amazing that were readily available that i’ve never ever heard of and so in coming out of that i thought you know what this is probably something i need to learn more about so i probably spent the next 18 months learning everything they could about the state’s behavioral health system and private uh health insurance and community-based resources how do we meet those needs so for many kiddos they either qualify for access or they qualify for long-term care so a lot of what we’re going to talk about today is those state systems because those state systems are uh how many families and especially many families who have children on the autism spectrum access services many of these same services are available through health insurance and so we’re going to talk a little bit about what that looks like and then hopefully you’ll walk away with a little better understanding of what’s out there for your children why would somebody need behavioral health services and what are behavioral health services and when i hear the term behavioral health i’ll be honest i didn’t really know what it meant when i first started doing these cft meetings and i’m talking about behavioral health or mental health i’m thinking of more extreme examples i’m thinking of like okay mental health behavioral health like maybe that’s for somebody who’s schizophrenic or somebody who has bipolar and in my mind there was almost a stigma attached to it and i started really thinking about as i was going through this process trying to understand what it is and i think behavioral health is this broad term that encompasses a lot of things and in a nutshell i think our kids have a lot of things going on and so some kids just have some behavioral challenges maybe they struggle with those changes in the routine and how they react to them maybe they get frustrated easily i know for many of the kids that i support they may not have the communication skills to be able to articulate what’s frustrating them at a given time so they’re frustrated they don’t know what to do about it and so they externalize they use behavior as their means to communicate i have a lot of kids on my caseload that have adhd i also have a lot of kids that are high anxiety what we know about kiddos on the autism spectrum oftentimes anxiety can be comorbid with autism as can things like adhd as can things like depression so as i looked at all of these things that’s what i think of when i think of behavioral health now hopefully there’s nobody in the room who says every one of those things is what i deal with but along the way in that path with our children one or two or three of these things may pop up and maybe at one point you’re saying you know what my child really is struggling with regulating their emotions maybe at another point you’re saying you know what they do seem depressed and if you think about some of the challenges our kids face there’s a lot of things that could create depression difficulty fitting in struggles in school difficulty building and maintaining friendships perception difficulties difficulty understanding where people are coming from so as i think about these pieces all of these pieces or needs that our children have and a path for us to go get services really does kind of lead down this path of behavioral health and when i think about and i talk to families most families do the best they can we work with our kids we’re trying new interventions we’re reading books we’re going to training sometimes the need may be greater than what we’re going to be able to address on our own and sometimes there’s a benefit in figuring out are there are there professionals out there are there resources out there that might be able to help so if you’ve identified that you know what your child is struggling there’s some needs that are kind of manifesting and we need to look at them there’s three different paths a fourth path that i didn’t put on there might be to do nothing and sometimes we’re exhausted as parents that is a reality sometimes we’re like at my limit i don’t have capacity to do anything else and so sometimes we wait and we’re just trying to wait it out and see does it get better maybe for other families that’s their experience that’s never been my experience i’ve never found that when there was an escalation in our home it just resolved itself i’m not that lucky in my experience it’s always taken some action some active uh plan to be able to go out and try and seek support so the three areas that we’re going to talk a little bit about today is private insurance private pay and then the services that are provided by this state and for the state services we’re going to call it access or altex for many families they fight and fight and fight to try and get qualified for dvd services has anybody here ever had that experience where you had to really go out and advocate trying to get services absolutely and it’s a complicated process and and i think that um it’s a circle i think that everybody wants to support kids i think the people at dd want to support kids i think everybody wants four kids our state didn’t have a lot of money our state didn’t want to spend a lot of money on services um we don’t want higher taxes necessarily and so it’s this circle and it’s really really hard to figure out how to navigate all that um a lot of those services that are available and so i encourage families to look at that i also do have a lot of families who will contact me and they’ll say we need to get services for our child or for our grandchild and maybe they’re in a financial circumstance where they’re not really even thinking about ded or owl tax they don’t they don’t need that they have the financial resources myself i’m not independently wealthy i have five children so as you can expenses come up and i think for a lot of us we don’t have necessarily the resources to just do everything and even for those families who are blessed to be in that circumstance where you have the financial resources i would still encourage you to be looking at these systems because what i know is that for children who are identified and who are in that system before they turn 18 they have access to services when they’re over 18 and i work with a lot of families and you know the reality is we’re going to do whatever we can to support our family we’re going to we’re going to sacrifice we’re going to support our children we’re going to support our family members but if there are resources that the state can bring to bear for our kids or as a transition for these young adults i think we should be looking at that so my encouragement to everybody is we talk about this even if you’re that person who says you know what i don’t we don’t use that you should learn and see where it might fit in i have families that have wonderful private insurance that that they can go and access services in some ways though the behavioral health services available from the state are better than what you’re going to find privately which is a crazy thought that we can get better services through access than we can private pay or through our insurance companies so private insurance companies do have behavioral health benefits a lot of people struggle to figure that out many plans have them segregated so you might have united health care and you’re looking through your little pamphlet and there’s not really a lot of discussion about behavioral health then you have to figure out oh wait a minute there’s united behavioral health which is a subset of united it’s a different policy that’s linked to your policy but most if not all major insurance companies have a behavioral health benefit and if your family is in a situation where you have a child who’s struggling with some of those things we’ve talked about earlier the first call you should probably be making is to your insurance to understand what are your benefits that are available a couple of couple of downfalls with private insurance uh one it can be really difficult to identify what’s covered and what’s available so if you’ve called your insurance company and i probably do this about once or twice a month with the family where we’ll sit and we’re trying to come up with options and they’ll say let’s call your insurance and we’ll sit in conference call and we’ll call the insurance sometimes it’s amazed to figure out what’s available and they say okay what service do you want i don’t know um psychiatry maybe maybe the kiddo needs to talk to a psychiatrist about medicine and they send you over a list and now you have a list of 150 people who are all psychiatrists in the phoenix metropolitan area and your eyes are glazing over because this is a big list and so then you start to call and what do you hear when you call oh we’re not taking new patients right oh we’re no longer accepting that insurance um yeah we can get you in our first opening is going to be in july wait a minute july that’s like a year from now and those are the realities that we face sometimes when you go through that process i think that there’s not a lot of information also available about specific services so when you contact a private insurance company there’s not a lot of people there who are there to help you navigate who are there and say okay well your child’s experiencing this you could go and look at that that’s not really the conversation they’re really more looking at identifying a clinician that they can connect you to and then you’re really hoping that the clinician that they connected you to has capacity to be able to meet with your family has knowledge of other resources and knows how to connect you so it’s a little bit imperfect i think there’s not a lot of information available on the specialist either so you could look up a psychologist and do a google search right now for psychologists in phoenix arizona how many results you think are going to come up thousands and as you do that search and you think about psychologists in phoenix arizona are all psychologists the same and as i’ve learned with my children i have children that are really all different levels so some of my children have a cognitive profile that is lower and a psychologist may or may not be able to connect i went to psychologists with my children we sat in there and i thought oh my gosh this is like the worst fit ever because they weren’t a good fit because they weren’t able to modify their approach to be at the level that my job needed and so i think that’s another reality i also think that there are limited services by limited services that may mean that services aren’t readily presented to you that are available it also may mean that some of the services that you would want for your child the insurance company may or may not contract with somebody who provides those services i can remember sitting in meetings and with my case manager when i found out what a cft was and i said okay i just need to know what’s available seems like a really straightforward question my child is struggling what’s available like what are my options out there if this was a menu what would be on the menu and my case manager looking he said well what would you like i don’t i don’t know what i would like i would like my child to stop tantruming i would like our home to have harmony i would like to raise my voice less like those are the things in my head so give me an indication of what’s out there and we walked in the circle for the better part of 40 minutes i would say tell me what’s out there and they would say tell me what you’re looking for if you tell me what you’re looking for i can tell you if we can get it it was insane has anybody ever had a similar circular experience and i think that’s one of the challenges in the systems and it doesn’t really matter to me if it’s the school system if it’s dvd or if it’s behavioral health it’s almost like a scavenger hunt where you have some clues maybe you were on a facebook page and somebody mentioned something you wrote it down because you’re like that sounds cool because they said it helped therefore and then you’re trying to figure out how to find it and you’re looking underneath the couch you’re making all these calls and we can’t really pinpoint where it is but i think that is a reality and then i think the other challenge that you face with private insurance is there’s not really a plan for case management so i work with families that have a variety of different needs so if i have a child who is hospitalized or in a residential setting because their behavioral health was in crisis i can get a little bit of case management when they get discharged because the insurance company is a little worried at this point because they just expended 20 50 100 000 on services so for that kid who is absolutely in crisis we can get a little bit of case management what if that’s not your circumstance what if your circumstances your kid is really depressed and you can’t get them out of bed what if your circumstances your kid flies up the handle and you’re just not sure how to support them and you’re losing sleep at night because you can’t seem to figure out how to get them what they need there’s not really a plan with most private insurance companies on how to case manage and it puts you at a disadvantage and it makes it really really hard show our hands who would do anything they could to support their child we all would and i talk to parents every day the problem isn’t a lack of desire to support our kids somebody’s got to tell us how to do that and i think that’s for me why i do this because i was so fortunate when we started our journey and our kids were really struggling and i was like frankly like thinking i was going to lose my mind because i couldn’t solve the problem because i’m a problem solver so i couldn’t solve the problem i couldn’t figure it out and it was so stressful and i kept looking and i kept trying to find it so for me i’m passionate about sharing this information because i want you to know that there are some solutions out there the private pay services are another option we talked a little bit about about private insurance one thing i didn’t mention about private insurance is a barrier a lot of people don’t want to deal with insurance companies and that’s probably a barrier on the private side and on the public side nobody really has warm and fuzzy experiences when they think about the insurance process if you’ve ever had a claim that they denied or had to get prior authorization nobody’s like you know i had the best conversation with my health plan they said i needed this prior authorization for this procedure they were so great they made it so easy for me why didn’t i do this earlier because that’s not the way it works it’s tough like you’re you’re having to justify every single thing you’re doing when you think about private pay services one of the barriers and one of the blessings for private pay services you can find a lot of providers that are willing to take your money but i think some of the same some of the same challenges exist one services are costly i don’t know what the average going rate is for a psychologist to sit down with your child and work with them my guess is in the phoenix metro area probably somewhere between 125 and 175 dollars an hour so if you have a child that’s in crisis and you’re needing to get counseling services for them and maybe you talked to somebody at work and they said doctor so-and-so is just amazing and you said okay i’m gonna go out and seek out their services that’s a pretty big commitment that that’s a lot of money that you’re going to expend now if they’re a great clinician and it works then it’s worth every penny but sometimes we don’t really know how that’s going to work out and we’re not really sure where it’s going to go the other thing is you still have no case management you still don’t know what’s available the good clinicians will know other people who are out there they might say hey based on where your child is at today we need to connect you with this other person or this other system which can be good but most of the people they connect with are probably also going to be people who are private pay so now we have this therapist and our child’s making progress and we’re so blessed because our home is de-escalating a little bit we can start to breathe again we can enjoy family dinners or whatever those traditions you have are so things are good and we’re spending about 600 800 a month and now there’s this recommendation that we go loop in this other person who’s also gonna be six or eight hundred dollars a month and now meanwhile we’re trying to figure out we’re gonna pay rent i’d like to retire at some point we used to vacation back before we had no money so all those things really do get a lot more complicated so i i’m a big fan and a big proponent of really looking at how do we leverage the state’s behavioral health system i will tell you that the behavioral health system available to the state it has case management available there are multiple agencies who do the case management so you can work to find an agency that’s a good fit that reflects kind of your family’s focus and your family’s values i think there are covered services guides available so when we go through that scavenger hunt of trying to figure out what services are available and we’re going to talk a lot about services today that you might be interested in pursuing i think it’s a little easy and the services don’t cost you anything and so if you’re meeting with a counselor and your child is making progress but there’s an indication that there’s this other thing that’s needed we’re not saying you have to choose between paying your rent this month and getting the service your child needs being able to go out of town and being able to get this service because those services are provided at no cost now i’m not going to go a lot into the process to get uh to get qualified for ddd that’s its own complicated discussion and i know earlier some families said that they’re in the middle of that now my contact information is here so if you have questions about that process or that’s something you’ve been dealing with i i talked to a lot of families about that because that is a often emotion evoking process uh where families don’t always find that an easy thing to do but i’m glad to talk to you a little bit about that so a couple things about navigating the state behavioral health system arizona has a reputation for many things being amazing at services is not a reputation arizona’s earned but i would tell you i’ve done this work for a while the children’s behavioral health system in our state is actually pretty good when i look at the array of services that are available how we access those services it’s not bad it’s not bad at all now october 1st a lot of things changed prior to october 1st arizona operated on a behavioral health authority a model where there was a regional i thought this is a kid if it is a need for your children you will find that more stuff is available you will find that you have greater access to services i’ll meet with families on a regular basis who will say yeah we had a case management agency it was awful they didn’t do anything i attended cfts we didn’t get anything accomplished we needed a service and we were told we were on a wait list and we never did get behavior approaching uh i had families who would wait a year to get an fba because their child had behavioral difficulties has anybody here ever experienced a long way to access a service so we have some families we have and so i i’ll have families who’ll tell me that and i’ll look at them and i’ll say my average weight to get somebody behavior coaching is three weeks my average weight to get somebody in fba depending on the time of year is three to four weeks and they’re looking like a crazy and then we’ll go into a cft meeting and we’ll work through the process and then three weeks later a behavior coach is assigning their child they may not have known how to advocate and frankly even their case manager might not have known how to go out and get them the services even though it was a great person who had the best of intentions they may not have known how to execute so as you advocate for your kids i think you’re going to start to see more things fall into place and the more you understand the process i think the easier it’s going to be i think these systems are all convoluted the greater your understanding the easier it will be for you to go and to say what about this and i’ve said in many meetings where i’ve suggested services for children and case managers look at me and say what’s that what’s a youth mentor what’s behavior what’s a behavior coach do you mean this art therapy there’s all of these different things that are out there and so the more you learn and the more you advocate easier for me to access them so our kids come from a lot of different uh angles they have a lot of different strengths and a lot of different challenges difficulty inhibiting behavior and i have a pretty fair number of families who that’s the challenge that they face their child will get frustrated isn’t really sure what to do and they’ll react or they’re just impulsive anybody ever experience that and and that can be a tough one because in our minds we’re thinking i just got to talk to him i got to explain it to him and and we’ve all probably went down that ineffective road i can remember sitting down with my children and saying like look like you keep getting in trouble with school here’s what i need you to do i need you to not do these three things can you commit to me you’re not yes dad and then the next day we did the same thing and then i had the same conversation again and then eventually i got to this point where i was like you know i think i’d ask my child to commit to improving their behavior like 15 times and 15 times they said they did and then 15 times they didn’t and so i think sometimes those behavioral challenges require more than what we were equipped to do as parents sometimes behavioral challenges require some different interventions sometimes they require people with a higher level of training to drill a little deeper to figure out what’s at the heart of those behavioral difficulties and how do we present the information in a way that might connect with our children a little differently i also will say that you know in my house i have teenagers and so now we’ve entered those fun years where anger and mood swings are a part of our everyday life and i think many families identify with that and that’s that can be typical i think for teenagers but i think it can be amplified for children who have some type of exceptionality because all of a sudden they have these hormones and these feelings and these mood swings but i also have this other piece that’s another barrier on top of that and so my reaction might even be more exaggerated or more intense i also know that for some of our children their perspective may be different so maybe we need to work on perspective taking they may not read situations in the same way they unfold so a situation happens and their view of what occurred is maybe different from how we would perceive it and so not only are we dealing with we have this this behavior we have this swing but that swing is amplified because they misread what was going on uh i would also say that as our kids get older i work with a lot of family that deal with either refusal behavior or kids who isolate themselves and for my kids that i work with on the spectrum when they hit about that middle school age i have a lot of families that struggle because their children now are old enough that some of those differences are manifesting and becoming more prominent and depending on a huge variety of factors their skill level their abilities their school their social outlets all of those things some of those kids end up isolating because they’re not really connected and you know the adage is that you’ve seen one child on the autism spectrum you’ve met one child on the autism spectrum i truly believe that i work with a lot of families but i can’t tell you i have two kids that have the exact same presentation of hundreds of kids they’re all very very different but i know that in the long run if we don’t work through some of these challenges it’s going to be harder for our kids to function in the community if i isolate it’s going to be hard for me to go to most high schools and colleges because the focus these days is through collaboration if i don’t readily work with people and that’s not my preference in the past we might have said oh they’re an introvert and that might have been okay but if now to progress to your education you’re asked to work collaboratively in a group of people who you may never have met or you may have nothing in common with you have to figure that out because your professor when you’re in college doesn’t much care if you’re an introvert or an extrovert they’ve made the assignment you’re going to work with these three people to give me this output and your ability facing class is dependent on it so some of these challenges i think we do have to look at i also think there are some behavioral health mental health conditions and i think this is a tough one for many families i know for me when my son was diagnosed with adhd i wasn’t really sure what to make of it but to be honest with you i don’t know that i really believed adhd was a thing uh as i sit here now i recognize i probably had adhd when i was young i got in a whole lot of trouble i got corrected a lot because i never was paying attention i was inattentive i was out of my seat always always always so sometimes it’s really difficult as we get some of these things showing that sometimes we identify things in our kids we might see that they seem a little depressed we don’t necessarily want to label that we don’t want to call it depression so we’re going to say they’re down but i think as parents we have to be watching because if we’re down ourselves for a period of time and we have trouble snapping back we know that can affect us it can affect relationships it can affect our ability to to deliver what we need to deliver at work why would it be different for our kids and so i think as you start to see any of these types of things that are popping up it may be important for you to start to dig a little deeper now i also work with a pretty good population of families that have adopted children or foster children i mentioned earlier that’s kind of where my journey started and there’s a whole nother subset of challenges that come from those experiences that kids have had i also work with a fair number of kids that have a trauma background um from a variety of different things that they’ve experienced and again that can bring some other complexity but if you see any of these things that are emerging my encouragement to you is to look a little deeper um best case scenario you go down that road and the professionals say i don’t see it that’d be a best case scenario i would love for all of us to have those conversations but if that’s not what we experience knowledge is power we’ll do anything for our kids but we need someone to give us guidance on what that anything is i think going down this is a way to go statistics say one in four people has a mental health concern it’s a pretty big number and i think that for us we just need to figure out where to go with it now i will also tell you and i have a lot of conversation with families exploring what’s going on with our kids does not translate to medicating our kids so for some families based on their family value system they say i don’t want my kid on medicine why do i need to know if my kid had adhd if you had adhd i’m not putting my child on medicine totally a family decision that’s something you have to decide on what works for your family i’m a big advocate of though let’s go figure out what’s going on so we should make informed decisions if i know a kid who has adhd i could be more aware and cognizant of how we approach different things that might come up i can have a little more understanding or empathy if they’re in a tenant if i don’t know it’s harder and if i’m going to talk to a teacher for my child and i can share with my teacher here’s what my child’s struggles are and here’s what their strengths are they can get a better picture and hopefully more effectively meet my child’s needs i have a question yes can you give an example of how anxiety typically shows up in younger kids sure i think it’s a good question so i’m going to preface this by saying that i am not a psychologist so i would defer to the experts any day of the week uh in my experience it’s a fine line so we’ll have many of our children who struggle with change they don’t like things that are different they like their routines anybody have one of those kids at home i got to find a few of them absolutely so that can be that can be typical even in neurotypical kids that can be typical for our kids on the spectrum i think that that is commonly seen that difficulty with those changes in routine where i think we get a little bit more intense is where now i’m worried that there might be a change in entertainment what’s going to happen if i go to school tomorrow is the bus gonna come is the bus going to be here on time is my teacher going to be at school is somebody going to be sitting in my seat am i going to have my regular seat and all of those things that start to worry us and all of a sudden we see it going from uh i’m reacting to changes to now i’m starting to anticipate changes or worry the changes might happen and and it goes all the way from mild to severe i was talking with a mom the other day she has had some health concerns in her child now uh every single day wants to know she’s going to die so imagine the the difficulty that mom faces dealing with health issues and now every day her child’s absolutely convinced she’s not going to be there tomorrow that’s that anxiety where it’s now getting to a level where it’s probably unhealthy because we also know that that some children on the autism spectrum can perseverate on things they can get thought stuck in their head and once that thought is there it’s there if that thought is worry all of a sudden that can become debilitating and so i think that again our kids ebb and flow you learn your kids uh ebbs and flows you learn their routine and kind of where they’re coming from if you start to see those things that seem like they’re intense and they’re stuck those are the things i tend to tell feminization hone in on we know that a characteristic of autism can be atypical behavior so our children may not present the same way as the neighbor child or maybe even one of our other children and that’s okay we we work through it we figure out how to make our children the most functional they can be and how to help them to be uh their best when we start to see these barriers that pop up and we’re like you know what this is more significant this is stopping them from functioning that’s when we need to go further depression would be another one that i’d say would probably be similar if you think about it we all have ups and downs you know you you have an old friend that you haven’t seen for a while you learn that they have an illness and that’s tough but when that when that mood of unhappiness or or or just that down out that continues over the course of days or weeks or months when our child comes home from school and they go to bed and it’s five o’clock and they don’t really care about anything the things that they used to enjoy they no longer enjoy we talk about the family traditions we have they’re not interested in the family movie night or having ice cream all of a sudden we’re starting to say wait a minute something’s going on that’s different and i just would encourage us as parents we we live this every day i know there’s been times where like in my home i felt like every day was a rough day a really rough day and i’m just trying to like little by little keep my head above water and so we have to try and figure out where those balances are and also have a reference point so that when we see something that looks even more intense in my home there were times when the level of intensity with my children was a eight or a nine out of ten every day so if eight at an eight or nine out of ten is your normal it’s hard to look for fluctuations but i would find reference points we had things we did that were part of that routine that my kids needed to to be able to function and thrive and when those things were off that’s what i had to make my note about wait a minute she’s no longer interested in this and that’s been something she loved for this long something’s different and that’s when i think we have to explore it i think emotional regulation comes in a lot of different ways also we have some kids who internalize so we have some kids who they just shut down i have a kid who when she’s stressed she shuts down she’s quiet she’s a statue sometimes she won’t answer me she will just freeze other kids go a different direction and they’re very external so when something’s bothering them they’re very external so they might tantrum they might throw things hit kick bite scratch punch some of those more extreme behaviors of the two i think the externalized behaviors probably get more attention uh if your child’s in the school and they throw the desk they’re probably going to get a lot more focus than if your child’s in the school and they put their head down and they just tune everything out um but all of these emotional regular change emotional regulation challenges pop up verbal aggression also and as our kids get older the presentation changes so that’s another wonderful thing we all have to look forward to when our kids are young they have one presentation as they get older and they’re exposed to different things their presentation morphs over time these are the things to watch for and i put on this list domestic violence and people kind of think what does that mean i have families um pretty regularly that report to me that they’re being physically accosted by their child um maybe they’re having difficulty keeping themselves and their their their children safe um i think that i have families who may have siblings and they worry because their child is maybe aggressing towards their siblings all of these are real world uh behavioral challenges all of these uh challenges also have real world solutions so i don’t just tell you this to paint this picture where you’re like oh my gosh this guy is depressing me i’m sitting in this thing and i’m hearing about all these problems these are all realities and my hope for you is your family never experiences any of them that hasn’t been my experience and so for you i want you to know that if any of these things pop up or any number of other things that aren’t listed there are things you can do and there are resources available because sometimes when our child is throwing an extreme tantrum the people in our lives say why don’t you spank them what’s going on with your parent team i would never let my kid do that i remember the first time i was in the grocery store and one of my children was very very uh upset she was not into the grocery store that day and she picked up a jar of spaghetti sauce and threw it down the aisle now if you’ve never seen a jar of cookies right in the fry’s aisle let me tell you and and i’m like i’m mortified right because people are looking at hey i’m looking at me my daughter just hooked a jar of spaghetti sauce down the aisle with the fries so now i’m scooping her up and i’m leaving my cart because we got to get out of the fries because this isn’t going good and her uh her tantrum isn’t isn’t ending anytime soon and people are looking at me and i can hear their words in my head to this day dude look at this guy who lets her kid do that anybody think i could have stopped that no was it a parenting issue maybe if i would have pulled her aside and would have told her i’m going to spank you if you throw the spaghetti just that probably would have changed everything yeah yeah so the reality is there are a lot of things going on and wherever your family’s at in this process if any of these things are things you guys have experienced then uh there are solutions i also talk a lot about strange family relationships we love our children i love every one of my children sometimes it’s hard hard it’s hard to keep a happy face um if one of my children um scratches me or spits on me i still love them but i’m gonna tell you it’s pretty hard for me to be excited in that very moment and if my child isn’t in a place where they understand what just occurred and why it would be offensive or why it would be hurtful that’s really really tough so i talk a lot about strange family relationships and as i talk with parents i always encourage them to do a couple of things one they have to make time for themselves as an individual if you don’t make time for yourself it’s going to be really hard for you to be effective for your child and for couples you’ve got to make time for your relationship and people say that and i talk to parents all the time and like uh yeah like i have time to do that but i would argue you don’t have time not to do it you know the divorce rate in our society is 50 and for parents to have a child with a special need it’s closer to 75 so if we know that it’s already tough to make it through this uh this fun experience we have this this roller coaster of life we have to think about those strange family relationships our children struggle for a lot of different reasons the number one thing i tend to tell parents that they need to focus on as we start to look for interventions is program how do we improve how our child communicates how do we improve how they convey their wants and their needs because so much of what behavior is is a way to communicate wants and needs sometimes we’re doing it appropriately if if i show up and i give you a hug and i have a smile on my face that’s a behavior that’s conveying that i’m happy to see you that’s a good behavior and we’re all okay with that if i throw my dinner plate across the table at you that’s also a behavior that we’re probably not excited about that’s conveying something else i also would say that for families sometimes in going through this process we learned that the strategies that we have aren’t working and that was a really tough thing for me in my journey as a parent i tended to parent when my kids were young like i was parented and my parents had a very rigid very direct here’s how it is black and white no gray this is how it is and i thought i could parent that way because that’s all i knew and my children based on their needs it didn’t work no matter how hard i tried no matter how much i thought it should work it did not work and so i had to learn new strategies and so as you think about some of these pieces if if you’re seeing that you know what my relationship with my child isn’t where i would like it to be uh for me i don’t like raising my voice generally speaking i want to do my absolute best to be even when i started realizing that you know what i’m raising my voice a lot with my kids i’m getting frustrated a lot it’s not productive it’s not helpful for me it’s not helpful for them so sometimes there are tools we can learn and resources we can get that can help us with some of those pieces as well our children also sometimes struggle with those peer interactions and that can be a tough one sometimes we don’t have kids in our neighborhood or in our community where we live that we can connect our kids with i work with a lot of kids that have difficulty building and maintaining those relationships i have some kids where they can make a friend anywhere but they can’t keep them and they have other kids that no matter how hard they try no matter how much they put themselves out there they can’t make those connections um i think that social problem-solving skills are also something that many of us may see with our kids where when there is that conflict my friend didn’t want to play what i wanted to play i wanted to see them and they didn’t want to see me they didn’t want to sit with me at lunch or whatever those social things are sometimes those are really really limited uh really really difficult for our kids to juggle so again these are all areas where there are resources available within the system so as i mentioned earlier effective october 1st access now has said we have these health plans and the health plan is going to be responsible for providing behavioral health support so we have quite a few health plans available in our county we have i think there’s seven arizona complete care banner university health plan care first magellan mercy care steward health choice united healthcare and the american indian health program if you don’t know who your health plan is for your child if they have altex do i frequently talk to parents and i’m like i don’t know they sent the card i don’t really use that take the time to find out see who it is the way the system’s set up you can change your health plan once a year generally that correlates with the month of your birthday because of all these changes they did a couple of things depending on which subgroup you fall within but it’s important to know and so i’m going to encourage you to go out and look many families whoever your health plan was they just transition some of these health plans are new like magellan is a new health plan to access effective october 1st so people may not know who magellan is magellan was around years ago magellan’s our behavioral health authority but as far as a medical insurance plan they’re new um each of these health plans is charged with the same thing they need to meet your child’s needs um some of them have more experience as it relates to behavioral health mercy care was the regional behavioral health authority so they’ve spent the last five years of their contract five ish years of their contract providing behavioral health support to youth in our community so they have the most established programs the most provider relationships because they’ve been doing it for a while i think for some of these other health plans they’re working very hard to get up to speed to bring on capacity to bring in providers to meet those needs is there a different overall health authority now so october so the regional behavioral health authority or the reba does stick around children who are in the care of dcs uh foster children they continue to receive behavioral health supports through the reba also um some native american children continue to reach support for the most part though the concept of the behavioral authority went away and it is now the health plan that asks us these health plans c7 thank you yeah so i have a question we’re we have all attached we have behavioral health services but they’re telling us that they don’t have capacity to give us the service we’re going to get there hold on to that so there are there are guiding principles for behavioral health in the children’s system in the state of arizona how those came to be years and years and years ago there was some litigation and sadly i wish i could tell you that everything we do is because it’s the right thing but that’d be great in the best of all worlds where we said kids have needs we’re going to come up with a plan we’re going to do the right thing because it’s the right thing it doesn’t always work out that way so there was some litigation against the state regarding behavioral health services for kids as a result the state adopted these guiding principles for behavioral health so the first one that i want to key in on and there’s a few more these are the hi there’s the highlight reel collaboration with the child and the family so earlier i mentioned the cft process is the cornerstone of behavioral health that’s because collaboration with you is a key component of this so when you go to the doctor because you uh have pain in your shoulder your doctor doesn’t sit down with you and discuss our different options and then you say well you know doc i’d really like to get an mri and the doctor said well you know what if we did a cat scan and you guys together come up with a plan it doesn’t work that way your doctor says here’s what’s going on here’s the test i’m going to order here’s where i want you to go go do it make sense if you go to the dentist and you have you need a root canal the dentist isn’t going to talk with you about the different options he’s not going to say well you know we could do no the doctor’s going to say you need a root canal behavioral health is quite a bit different though because we’re not talking about a physical element so the cornerstone of it is collaboration with you your child if that’s appropriate services have to be designed to increase functional outcomes so what’s a functional outcome if right now i go through life and i isolate myself is that functional for the long run i might have a hard time working if i never leave my bedroom my employer is not going to come to the house and say hey david i’m here to pick you up for work you want to keep sleeping it’s okay that’s fine we’ll come back and try again tomorrow it doesn’t work that way so it has to be designed to increase financial outcomes and the service has to be tailored to your child and your family so it can’t be a one-size-fits-all it can’t be you have depression you have to go to this room you have anxiety you have to use this therapist it doesn’t work that way services have to have respect for the child and family’s unique cultural heritage there are different belief systems that we all bring to the table based on our experiences we can’t tell you that your child has to be medicated because they have adhd it doesn’t work that way your family’s cultural your heritage all of those things have to be respected in this process services have to promote greater independence so if we’re giving you a service that’s making you dependent and making it harder for you to function independently that’s not good for the long run there are times when we may need to layer in more intensive services but there always has to be a plan so we’re figuring out how are we promoting greater independence a good example of that i’ll frequently talk to uh to families who have a child in the school system and their child has behavioral difficulties and the school says we’re going to give them a one-on-one eight so they started with this one-on-one aid when they were in the second grade and now they’re like in the seventh or eighth grade and they can’t complete a single task without looking over their shoulder to get approval from that person who’s standing behind them it’s not functional because your boss isn’t going to come stand behind you and say okay yeah no yeah okay go ahead hit enter okay good no oh no it doesn’t work that way so we have to promote that independence uh services have to be provided in the most appropriate setting so for your child that might mean your child has high anxiety would we make your child go to a therapist in an office if they have tremendous anxiety don’t ever leave the house that would make a lot of sense so for your child based on their unique need that might be a more appropriate setting these services have to have collaboration with others so we have to have multiple people involved my experience with cfts was my case manager would call me the only behavioral health service i ever got from probably 2008 to maybe 2014. we got meds management and we got respect so my case manager would call me she’d call me twice a year she would say hey i’m going to email you these papers and you just sign them i know you have four kids who get services just sign one of them and all i’ll just photocopy it and make things that we actually did a meeting and then you’ll continue to get your respite and since that’s all i thought they ever did i was okay with that then i learned wait a minute we’re supposed to collaborate with others now i go to meetings and there might be six people there there might be a therapist there a case manager there might be somebody who works at some of the special programs that are out there so now it’s not just the case manager who doesn’t even directly work with my child it’s my kids therapist it’s the person at the equine program it’s all of these people talking together about how is my child progressing what’s going to be more effective if we’re looking at the big picture or the or the small picture the big picture services have to be accessible so we need to have services that your child can access and services have to be timely so one of the questions that that came up earlier that frequently i hear is i was told that they don’t have capacity or that my child is going on a weightless anybody ever heard that so we hear that so what does that mean that means there’s a significant breakdown because there is no such thing as weightless it is against the law to create a wait list for medicaid services in the state of arizona you cannot create a wait list you cannot say hey this kid really really really really needs counseling and we’re going to put them on a waitlist and then just you know four to six months we’re going to get them counseling if timely access to services is what’s expected so what does that mean well most frequently when i hear that there’s a waitlist for there’s no capacity it means that we’re not casting the net very far so let’s say that you get case management from abc agency and you met with your team and they said you know what we need to do a referral for behavior coaching i check with our clinical team we don’t have any behavior coaches so we’re gonna have to wait that tells me that that agency did not put out a call to other agencies to see who else has the capacity to provide behavior coaching because believe it or not there are hundreds of agencies that provide these services so whether it’s counseling behavior coaching mentoring there’s agencies out there that provide these services so here’s where i think it gets a little gray so as parents we don’t know any of that so what are we used to we’re used to asking for a service and then being told it’s not available and then we just say okay and then we meet with this person three months later and we ask for a service and they say it’s not available and we say okay so first thing i’m going to tell you is if a service is required for your child somewhere that needs to be in writing so whenever you’re doing a cft or behavioral health staffing there is a service plan that’s generated from that the plan says what we’re leading to do what we’re wanting to accomplish so i would encourage you all to request a copy of that anytime you have a meeting just like when you go to the doctor you walk into the doctor’s office they give you a discharge summary they’re telling you what the next steps are they wrote it down for you hey you’re going to go home you need to get rest you need to drink lots of fluid if it’s your system your symptoms don’t get better in two days you need to come back we’ve all seen it the behavioral health system is not different there is a discharge summary or a service plan that says here’s what we talked about here’s what we agreed to so i would encourage you one start requesting a copy of that what you may find is what was typed when you were sitting there in that meeting doesn’t in any way reflect what was discussed in the meeting and that’s the perfect opportunity to say that hey just look at this this doesn’t actually reflect anything we discussed i requested a copy of my children’s service plan my children at this point were probably when i requested it my child was 12. and and it talked about strategies we used to de-escalate and one of the strategies here peek-a-boo now when my child was five that absolutely was a strategy my child was upset we would play peek-a-boo they completely forgot about why they were upset we weren’t still doing that at 12. so that tells me that for seven years they didn’t update any of the things we talked about because it still said we played peep-a-boo now maybe you’re into peek-a-boo with your 12-year-old me i didn’t find that effective anymore and so it told me that i need to hold them to a standard they need to share with me what they’re writing wow and we need to have that discussion right now so if you haven’t done that i would encourage you to before your next meeting ask them to send you a copy of the current service plan that way you can take out your highlighter you can highlight the things that need to be updated in that service plan there’s a wide variety of things we talked about your cultural heritage being something they have to respect so there’s a question in there where it asks you about your preferences so if that’s what it’s asking make sure that that reflects where you’re at there’s a section that asks you about what’s your family vision what do you want to see for your family great question if you’re reading it what it’s talking about is years ago and you’re in a completely different face of space as a family then that’s something you can ask them to update services have to be timely so most families don’t realize that when they tell you there’s a wait list that’s that’s illegal so first i get a copy of the service point second i would put your request in writing so the next thing i’d be doing i’d be sending an email to your case manager and saying hey we did this cft on this date you were going to submit a referral for behavior coaching or for an fba it’s been a week can i get an update you may or may not get an update i wouldn’t give it more than five days five business days is about as much time as we have to figure out what we’re doing if we got to a point where we felt like your child needed a functional behavior uh analysis because our behavior was that escalated that’s something we need to address today not next month not next year so if you’ve given them that five business days and you don’t have an answer then you need to follow up and maybe you need to go to their supervisor if you’re hearing that your child is on a wait list if you’re hearing that there’s nobody that has capacity then you need to call access so access has a process where families can file what’s called a quality of care complaint so if this is the standard that the state is established and this standard is not being followed then the quality of care your child is receiving is some par now i’m not one that tells families the first thing you should do is go file a complaint but if i met with you and you said my child needs this service and now i followed up with you in five days and now it’s been 10 days and you still don’t have an answer for me you had your chance to meet my child’s needs and at the end of the day my child needs need to be met so when you call access and you make that quality of care complaint access is then going to reach out to that provider and lo and behold they will figure out a way to make that happen um one second i had a client who had what i would probably characterize as significant significant behavioral concerns there was a hospitalization for multiple days at phoenix children’s which was doing nothing for him and the decision the team really had arrived at is that the child needed out of home placement he needed to be placed in a different setting to be able to progress because uh he was no longer in a place where he could be safe and uh we waited and we waited and the first week went by we sat at pch and nothing was happening and then the second week and so we were now on day 16 where this poor kid is at the emergency room pch not getting anything just there and so we called access and we said hey here’s the concern this kid’s been here for 16 days they’ve talked about trying to find an auto placement it’s been like two months and nothing’s happened what’s the plan that call was at 11 pm we got our first call back from access at 3 p.m saying that they had assigned it to somebody we got the next call at like 7 pm saying that that person went home but they were still working on it the next day the hospital called and said he’s going to be discharged at three and they threatened the parents you better come pick them up if you’re not here at three to pick them up even if we didn’t do a single thing for them even if it’s still the same issues we had before we’re going to call dcs so obviously the parents are going to go pick them up i call access that morning they say look they said this kid’s being discharged they opened a group home just for that one kid at three in the afternoon they created a new group home they had a vendor that had a house they literally opened a new group home for that one kid within one day well we had taken more than 60 days and they couldn’t find a solution for it access ultimately has a responsibility for all of these things so if it’s not happening that’s that’s a big issue for access and so they will absolutely take extraordinary steps to make sure these things are happening i’d like to tell you i believe it’s because they always want to do the right thing i have the sneaking suspicion that might be because they were involved in a lawsuit that lasted like 20 something years and they probably don’t want to go back there there’s currently a class action that was certified against the state that last november there’s a lot of scrutiny being placed on what we’re doing with kids in behavioral health so i would say that if you’ve given your provider that opportunity then sometimes we do need to file a quality of care complaint on the autism society’s website i do believe there is a link on their website of resources on how to file a quality of care complaint if that’s needed the same thing goes with ddd so we’re talking about behavioral health but let’s say your child needs a physical therapist my child needs a physical therapist you know what i was told i mean we just don’t have a physical therapist we should have a physical therapist i believe they don’t i believe it’s because they don’t pay them anything and now to be a physical therapist that’s a doctorate level job now so you have to have a doctorate to be a physical therapist so there’s not a lot of physical therapists out there then pay them more because at the end of the day my child needs a physical therapist my child has muscular dystrophy and she’s not steady on her feet so we could lament all the reasons why or we could fix the problem and if that’s what you need to do if you need to follow that quality of care complaint to escalate the situation so that you can get resolution for your child and that’s sometimes that’s what you need to do now how to access support you all you need is coverage under one of the access plans there’s a phone number on the back your card you can call it there are multiple agencies that do case management some are better than others some some have more expertise than others the two behavioral health agencies that probably are the most specialized in maricopa county as it relates to autism our child family support services and touchdown behavioral health both of those agencies have spent a lot of time and a lot of energy to really uh hone in on the needs of children with all children with a lot to them so if it were me and i needed to look at an agency to provide case management for a child with autism i would strongly consider one of those two agencies um sure child family support services cfss and i actually think they have a table downstairs oh yeah they do and then the other one is touched on behavioral health touchstone behavioral health is like on 35th avenue and maybe greenway or something like that cfss is like on i-10 and elliot so it’s kind of two opposite sides of the valley both of them have a lot of services that are really honed in on children on the autism spectrum child family support services cfss okay so we have touchstone yeah i’m happy with their services yes but for counseling they’re telling me that they just don’t have the capacity to see my child every week so maybe do it every other week but then the therapist i mean so one of the things that we run into and i’m just going to speak candidly one of the things we run into if i’m running a behavioral health agency i’m running abc behavioral health agency and i have 100 employees and i have 350 families and a family needs services who do i want to provide the services obviously your own company but the system isn’t designed that way the system is designed that we provide timely access to care so if my clinician can’t provide the service then i guess i need to do a referral and find a clinician elsewhere that can and in many situations when i have families who tell me there’s just nobody it’s not that there’s nobody it says there’s nobody in that agency and they’re trying to keep everything under their umbrella is it a best practice to have everything under water brother sure from a coordination a care standpoint sometimes it does make sense i’d much rather my case manager can walk across the hall and talk to somebody but if it’s a barrier to your child’s unique needs being met then it’s not appropriate we need to refer it out and that’s probably the conversation so when i’m in a cft and we’re discussing counseling we’re really trying to quantify the need and if we’ve established the need for this child is to have counseling once a week that’s what we’re here to talk about what’s the need and if that’s the need then that’s what they need to provide not every other week every third week because our person doesn’t have this or that it’s based on what the child needs it’s important you quantify the need though because a lot of times we’ll go to these meetings and we’ll say the kid needs counseling but there was never a discussion about frequency why my child need counseling more frequently maybe they don’t hang on to things maybe it takes them a long time to build relationships if i know my child is standoffish and it’s going to take five six months to get to know you before they’re gonna give you anything then that kid needs to be in sessions more frequently because for them to access it they need that repetition establish a need and then you have to insist and then those are the conversations you have to have in the cft every agency has a little different bank to it those are the two agencies that have the most expertise with autism though i tend to do i have probably more clients who are connected with cfss both of them are good agencies but i would just encourage you if your agency doesn’t seem like they have a lot of expertise and autism i’d be asking that question what supports do you have what programs do you have that are specific to autism because if that’s your child’s needs i want to be with a place that’s going to be able to most effectively meet the need yeah if your agency is ineffective how often can you move to a different age whenever you’d like okay all you need to do is see who contracts with your insurance company and my guess is of those seven insurance companies all of the major agencies contract with all of them and so if you’re with uh abc and you say that you know xyz is going to be a better fit for my family then you simply close out one and start with the other the considerations you need to think about if you’re going to switch your medicine if your child is getting medication through one agency you need to think about what does the timing of that look like you don’t want to change a week before your next med check because then your kid might not have their medicine so you need to be mindful of that for most of the agencies the transition process is not a lengthy months-long process a lot of the agencies do walk-ins where you walk in and that’s how you do your intake you bring your child with you and they do it some they schedule appointments but it’s pretty seamless yeah how do you start the initial relationship with one of these is it you know just walking in the door is it via referral from a state agency or generally speaking you walk in the door if your child has an access plan these are the agents that provide the service you call them up and say my child needs behavioral health services here i am they’re going to come in they’re going to do the intake they’re going to identify what level of need what level of support how they might fit the needs that you have and then you move forward from there and how i found i don’t think my support coordinator mentioned anything about that correct and and how should it work you’re meeting with your ddd support coordinator all the time they should be the expert some of them are amazing and are absolutely experts others are not it just depends on what’s going on so all i can say is share this information with people in your circle because they need to know this because for so many of us our support coordinator doesn’t talk about behavioral services who here’s heard of aba applied behavior analysis one of the uh research-based intervention that is demonstrated to be effective for children on the autism spectrum that’s a behavioral health service these agencies are the people who connect you with that service but for so many families they ask and they say oh we don’t have aba we don’t have aba so for some of these companies there’s an agency called card card contracts with united healthcare to provide aba there’s an agency called ast ast contracts for the united health care there’s a the hope group contracts with uh mercy care aza united contracts with mercy care so great agencies that are really really top-end well-respected experts at aba they contract with these agencies but you know who never gets that information as parents so then maybe your child got aba when they were five and then in our infinite wisdom a few years ago magically we decided at six they didn’t need aba anymore which that’s now changed but so then now your kid hasn’t had aba and you’re thinking man we’re falling backward this is how you go about that path to get those services started back up because those services remain appropriate and available to your child um aligning services again the csc team including you then the service has to be clinically appropriate so if my child is i don’t know three years old and i say i want him to do horseback riding lessons maybe a little gray might not be appropriate for a three-year-old so it needs to be appropriate the things that we’re talking through um your case manager should be knowledgeable about what’s available but that’s not always the case so if your case manager can’t explain to you what’s available then tell them you’d like to get a copy of the covered services manual there’s a manual that says these are the services that are available now what services are available we have everything from behavioral health day programs crisis services health promotion in extreme cases residential services there’s a ton of other services too and i want to talk a little bit about meds management counseling uh trauma therapy for children who have a trauma background aba services who here’s heard of big brothers and big sisters how long does it take to get a big brother or big sister assigned to your job a year because there’s such a need because so many kids need somebody to connect with them who may not be their parent because sometimes we’re mom and dad we’re not the people they’re going to connect with youth mentoring is a service that’s available there are multiple agencies in the valley that provide that service i think it’s called youth mentoring would be the unofficial term for it i’ve kind of what it’s called it’s like life skills building or something like that but that’s where an adult would work with your child on building skills that they need to be functional out in the community uh behavior coaching is another service behavior coaching is another one where some agencies say we have behavior coaching then they assign their behavior coach and you’re like what waste of time was that this person did absolutely nothing if the behavior coaching is ineffective and not meeting the need then that’s the next conversation with the cft we tried your behavior coach respectfully that did not meet the need i’m requesting a referral i’m requesting a referral for card for ast for the hope for aza united because we know what they do every day all day they do autism they’re the experts in it and if the agency’s person wasn’t the person who who has that ability other programs and other supports that i want to mention there’s something called family support who here feels like they have all the answers to this stuff i can remember when things were most intense at our house there were days where i laid in bed like pro and conless getting out of bed today like and i got to feed them i probably got to go to work but on the cons if i get out of this bed then i get to walk out there and i got to deal with life and i think sometimes that is a reality of where we are so family support is a covered service that’s available generally provided by somebody with lived experience meaning somebody who has lived what you’re living not somebody who went to school and graduated last year and is going to tell you all the things they learned in class but someone who has sat there who has had their share of tears who has seen their share of struggles who’s on the other side of it now and then is investing back into families so that when you’re like i just need to talk to somebody for me sometimes that’s not our closest friends because they don’t get it if you don’t have a kid who has needs i’m sorry i don’t know that you’re going to get it when you live this every day and if you think about some of the best connections you have to support you it’s people who understand when you say here’s what happened today and you’re you’re mortified because your child struggled this and this and this happened the people who get it are the people who lived it family support is a service that’s available not enough people take advantage of it that could be somebody who’s going to come sit with you when your kid’s in the hospital because there’s a psychiatric hospitalization that could be somebody who’s going to talk through it with you when you feel like i’m going to lose it because this situation happened that could be somebody who’s going to go to the psychiatrist’s appointment with you because you’re really struggling with the relationship with a psychiatrist you don’t feel like you’re able to get your voice heard so family support is a great resource there’s a ton of parent training that’s out there all of these services are free there’s parenting classes there’s classes on how you can improve your communication and a ton of other things equine therapy there’s some really good programs that use used horses as a means to build a bridge with the children there’s art therapy programs there’s a ton of therapeutic recreation programs i have children who do dance programs i have children who do karate there’s a ton of different programs where they use therapeutic interventions to be able to connect with their kids if you’ve ever tried to take a child who had a high level of need and just go put them in some community based program you know that doesn’t always work sometimes that can’t be effective so there are programs that understand that if the best kept secrets that nobody’s ever told yet yeah i learned these things and i’m so blessed i had this parent he’s just an amazing lady who invited me to a cft one day can you say what a cft child family team meeting that’s where get everybody together had she not opened my eyes i would have never known these services are available and earlier we talked about private insurance even with great private insurance go find equine therapy tell me how that goes for you because you won’t you won’t find art therapy because private insurance is thinking about conventional methods the conventional methods are psychologists psychiatrists right that’s what they’re looking at these are all out there they’re all established in the behavioral health system they’re already in place and they’re already programs you can access and there’s some really good ones yeah so um we don’t have tv services so can’t can i tell my insurance they need to pay for these so so yes and i believe cynthia mccluskey is doing a presentation later today that’s going to focus on ebsdt i think it’s today um look on your agenda but i know cynthia is doing one so there are a lot of things we can nudge them for epsdt is a is a law that basically says that if a service is needed to ameliorate your child’s disability then it has to be provided and so it was this morning it was it was at nine so if you know cynthia or if you see cynthia but you can get the handout incredibly passionate about epsdt and i’m 100 sure she will help guide you yeah how many of these things are available for our children who become adults so that gets more complicated a lot of these programs are geared around uh kids some of the programs extend past 18. it really depends on what the age is now i know like programs there’s a program like art awakenings art awakenings does art therapy so they do have programs that extend past it’s somewhat um specific based on the age of the of the participant and what the program offers many of these same things we’re talking about though exist in the adult system it looks different though it gets more and more complicated to navigate the older the kids get yes only for people that have all pets or some type of governmental services or community only so typically typically it’s available through uh through people who are all text or access eligible i will say though some of my most effective ddd meetings are when i invite other stakeholders so let’s say you have a private counselor that’s seeing your child and you have these other private people there’s absolutely no reason the ddd support coordinator can’t call everybody together i believe you get farther when you have more heads working together and especially when they’re professionals because then they can play off of each other and talk about well here’s what this is how about that for a lot of families too i’ll tell you just because you’ve been denied before or in the process don’t give up there’s a whole nuance to how you get approved for ddd and altx but don’t give up because if you persevere through that it does open doors in the future for your kid is that something you help with i’d be glad to talk with anybody about it because i do work with quite a few families and that is an obstacle that they face my contact information is here so if you call me i’m glad the guys can give you feedback um again wait lists are not permissible under any circumstances and services have to be provided and i made this one of my last slides but i really think it’s important that you hone in on that um again we talked a little bit about family support partners and those are people who can come alongside you um and i think we’ve been doing some q a we have about two minutes left and i’m going to stay after so if anybody has any other questions anybody have anything else they want to throw out are we just illegal for just regular interest i can’t speak to that i think that there’s some nuance here because medicaid services are governed by the government and the government sets parameters on how services are being provided and there’s accountability that’s tied to it so the state of arizona is obligated when they get that money from the federal government to provide services to meet the need and so i think it becomes really sketchy if you’re getting paid to provide a service but you’re not actually providing it i don’t know that private insurance has the same parameters that are placed on the zero private organization i couldn’t tell you for sure thank you well i appreciate everybody coming and participating my contact information’s on there i do this work because i’m a parent first and foremost and i have had my share of struggles along the way there are some amazing professionals who supported our family had they not done that i don’t know where i would be today i don’t know what my kids would be today so i do this work to help if you have questions you’re more than welcome to email me my email address should be on that last page reach out and if there’s something we can do we spend our time navigating education bd and behavioral how we’re pretty passionate about it i’m glad to help however i can thank you everybody
David Jefferson discusses behavioral health services in Arizona. To learn more about David check out his website:
https://www.parentsupportarizona.com/
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