Theresa Freed 0:00
Navigating the world of services for those with intellectual and developmental disabilities can be confusing. On this episode hear from area experts who will offer advice and step by step instructions on accessing resources and supports right here in Johnson County.
Whether you live in or just love Johnson County, Kansas JoCo on the Go has everything Johnson County. Here's what's happening and what's coming up in the community you call home.
Theresa Freed 0:29
Thanks for joining us for JoCo on the Go, I'm your host Theresa Freed, a Johnson County resident and employee of Johnson County government. parents know making sure your children have every opportunity to reach their potential and have the supports and services they need to thrive is a top priority. But when your child has an intellectual or developmental disability, getting the help you need for your child can be a challenge. But it doesn't have to be we've got a great group of experts on this episode today to talk us through the ins and outs of getting services. So let's start with some introductions. If you want to tell us your name and your role, we'll go ahead and start with Mandy and then go to Seth and then Stephanie.
Mandy Flower 1:07
Hi, I'm Mandy Flower. I am the Johnson County CDDO director. I oversee our CDDO and what we do is we provide IDD services to folks in Johnson County. We help with eligibility determinations, and then oversight of the agencies that provide those services.
Seth Kilber 1:25
I'm Seth Kilber, I also work for the CDDO. I do eligibility determination. So I am often the one of the first people you're dealing with as an individual is first coming into our system and the CDDO do intake and eligibility process. I basically just tried to walk people through the entire system from first returning the paperwork to being determined eligible to be determined functionally eligible and just doing some resource referral and coordination.
Stephanie Coleman 2:03
Hi, I'm Stephanie Coleman. I am the family discipline mentor and Family Support Coordinator at the University of Kansas Medical Center with the Kansas LEND program. LEND stands for Leadership Education and Neurodevelopmental and related Disabilities. It is a mouthful, hence the word LEND. I also work at the Kansas University Center on Developmental Disabilities in Lawrence. As you can imagine, I wear many hats. At LEND. We are a workforce development training grant. We have short, medium and long term opportunities, and work with many different disciplines, including family and self advocates, and training on Autism and Related disabilities and supporting families as a team. One of the community programs that I support is our Kansas land Family Education series. Monthly, we provide different topics that are meaningful to families across the state of Kansas via zoom and Facebook Live. If you can't make it to a live session, we are also archive them on our Kansas land YouTube page. Lend also works with various community partners, such as the CDDO do to provide important resources and support. That's great information there. And we're going to touch talk a little bit more about some of those resources a little bit later as well. So I want to start with the Johnson County developmental supports many great resources there for families with children with intellectual or developmental disabilities. Can you talk a little bit about how we serve this population?
Mandy Flower 3:28
Well, what we do at the CDDO is that we are responsible for helping people determine if they're eligible for IDD services. So those are typically services that will happen after your child has become an adult. We also as Seth mentioned, he is in charge of doing the eligibility process. So the CDDO do is with someone that has an intellectual developmental disability, for the duration of their life from when they enroll in the program. They maintain eligibility, and then they are on the waiting list, which I'm sure we'll get into. And when they go receive services. When they receive those services. Then we oversee, oversee the agencies that provide those services. Currently, due to COVID, we're still providing all of those services that we were doing before COVID. So Seth is doing eligibilities via webcast and zoom to ensure that everybody who needs the services has that opportunity. We also have on our CDDO website a list of resources that people can utilize during this time with COVID in regards to PP and other different resources that are available throughout our community,
Theresa Freed 4:44
for those who don't know what CDDO stands for, can you kind of talk about what that is exactly and how Johnson County serves in that role?
Mandy Flower 4:51
Absolutely. Johnson County CDDO is a Community Developmental Disabilities Organization and Under the DDRA, the Developmental Disabilities Reform Act, they decided that the state was going to be broken up into CDDO catchment areas in Johnson County is under contract with the state for us to be the CDDO, which that means that we are responsible for the oversight, eligibility, ensuring quality services and making sure that everybody has a chance to live the life that they choose, and that they want to live in their community under the home and community based services waiver.
Theresa Freed 5:38
Okay, and we'll also talk about that too, in a little bit here. So another one of these acronyms, you know, there are lots of them. And we'll, we'll try to make sure that we're telling people what they are as we go here. But one important aspect of this processes the IDD waiver, can you talk about what that is and why that's important for for families of children with disabilities,
Seth Kilber 6:03
it's important to kind of understand the history a little bit. These are, these are individuals who historically had been excluded from living and integrated systems and, and being in and around their home and community. They were often put in institutions, parents told, you know, he's never going to be able to live a normal life, you might as well just kind of ship them off to a state hospital, something like that. So so we're kind of there's there's been this movement, to, to keep individuals out of institutional settings, and keep them into their homes and their communities where they live, where they grew up, where their families are, where their friends and their peers are. So that's kind of where the pushes. And so because the way the funding was set up decades and decades ago, where we're funding was really prioritizing institutional like settings, states have now implemented what we call waiver. So so a system that essentially allows states to kind of waive this institutional type setting, and provide supports in an individual's home and community based settings. So that's, that's where that's where we get this home and community based services or HCBS. for short. Yes, we do have a lot of acronyms. So when we talk about the IDD waiver, that's just one of seven different waivers that Kansas has instituted. And so it specifically targets people with an intellectual or developmental disability, who are likely going to need lifelong and ongoing support, usually in the form of some sort of staff assistance, so that they can remain and live in the most integrated and studying possible.
Theresa Freed 8:13
That's a great summary of what this is really all about, and what the intention is behind what we're talking about today. Can you talk a little bit about war, why that benefits the individual, and then also the families. And then Stephanie, if you can also talk to you about about the community resources and how those play play a role in helping families,
Mandy Flower 8:37
I think that it really is beneficial to the person served with intellectual or developmental disability, because in previous decades, these people didn't have the opportunity to for choice, they didn't have the opportunity to even pick a house where they would like to live close to their friends and family. And now this is giving them some autonomy back, which they deserve. And they are completely entitled to we have folks now who are thriving and employment opportunities, and just really getting to be a part of their community, like each and every one of us want to be and how they deserve to be. Um, for parents, it's really great, because when you're preparing for the future with any child, you start thinking about what what's going to happen, were they going to go to college, things like that. If you get involved with the CDDO or an organization like Stephanie's with wind, you can find out what's available because I know parents, a lot of times if they have a child that's born with a developmental disability, they might get discouraged and down. And I think that we can provide some hope that there's different opportunities for when they grow up, and they can live the life that they want to live. And Stephanie and I think the key is getting that word out there. to families. For us, we want people to know and see if their, their loved one is eligible. And Stephanie and her team play a huge role in that
Stephanie Coleman 10:10
we do. We have so many good resources and supports and services in the state of Kansas, we just have to get the information out about him. That's what we try to do through the Family Education series is do separate sessions, and include our partners in those conversations where we've had the CDDO come and talk, we've had our managed care organizations that run the Medicaid, they were also part of that organization. I think families need to look at a individual's life and say, what supports and services do they need, and then start mapping those out and seeing what those are, you can go to your targeted case manager, which is a considered TCM in the abbreviated world and have them help kind of walk through some ideas of what else can support that individual to live their best life where they want to live. We have resources like families together that can help with that information. Like I said the CDDO in the targeted case managers Kansas lend the University Centers on Excellence in Developmental Disabilities in Lawrence does a lot of research around supported decision making and self determination. Because it's really important for these individuals to be able to make their own decisions and how how they go about doing that. There are some disabilities that that allow for more choice and freedom and making those sorts of decisions. So how do you help families kind of narrow in the best path for their loved one? To be quite honest, I think it's going to be individual for each person, they really need to sit down with their team of providers and say, what is best for Stephanie? What all does she need in place, she might need the IDD waiver, she might need voke vocational rehabilitation or VR to help with employment services. They may need day service programs or residential or college programs. There are many college programs coming up throughout the US that support individuals from a degree and non degree seeking position. So it's really individualized. So it sounds like with all these resources, the goal really is to help an individual progress in whatever way that is, you know, whether it's with education or, you know, movement or or things like that, and and you all are able to to help families figure out what the best path is. So can we talk a little bit more about what waivers are available?
Seth Kilber 13:01
So Kansas, Kansas has seven different waiver programs. And, again, this gets very confusing, but when we talk about waiver programs, we're specifically referencing Medicaid funded programs. That helped keep people that were traditionally institutionalized, again, out of institutions. So the seven the seven programs or the seven waiver programs that that Kansas has, include, obviously, this Intellectual and Developmental Disability waiver, we have a frail elderly waiver for individuals over age 65. There is a brain injury waiver, there is a technology assisted waiver for individuals who need rely on you know, some some piece of medical equipment. There is a autism wave for, for for children, specifically who meet the autism criteria.
Mandy Flower 14:04
Yeah, severe emotional disturbance River. So that's, um, if somebody has a severe and persistent mental illness or severe emotional disturbances that goes through our community mental health centers, like Johnson County Mental Health, um, and that was pretty good on that pop quiz, Seth.
Seth Kilber 14:24
I think we missed the last one, the physically disabled waiver. So yes, that I think that brings us to seven
Theresa Freed 14:31
How do people know exactly which one they're supposed to be on?
Seth Kilber 14:34
You know, each each waiver has their different set of criteria. You know, obviously, for a waiver, like the frail elderly waiver that's, you know, geared towards individuals over the age of 65. You know, autism waiver that that's geared towards children, I think you have to be under the age of six before you can get on that again, It's It's time limited. The K dad's website, the Kansas Department for Aging and Disability Services. They are the managers of these waiver programs. So their website is probably the most up to date information for which waiver may a person may be eligible for and has that those eligibility requirements because the waivers do so not all of them, the IDD waiver is typically a lifelong waiver. So somebody gets on it and is usually on it. For as long as they need it. Whereas other waivers, they're more time limited, you know, an individual maybe gets on the waiver and has to progress. And once they've shown a certain amount of progression, then they either drop off or can transition to another waiver altogether. So yeah, I would say, definitely check out the K dad's website. Again, that's Kansas Department for agent and Disability Services to see this the seven different waiver programs and see if you know, somebody you might be thinking about or possibly yourself qualifies for one of these waivers.
Theresa Freed 16:14
And so can you talk again, a little bit about how somebody applies to be on these services? And once once they are what what kinds of services? You know, are they immediate, and they come people come to you or are you having to proactively seek out, you know, different information or different programs.
Mandy Flower 16:32
I'll start here, then Seth can go into more of the eligibility with ours that the CDDO we do oversight over the IDD waiver. And that's the intellectual developmental disabilities. And some of the criteria are that originated at birth. It manifest before the age of 22. So that's down syndrome, things like that Fragile X syndrome, different things of that nature. That also differentiates us from some of those other waivers. Like CEP said it's lifelong. But that disability had to start at birth or manifest before the age of 22. We have a lot of folks right now who I believe, you know, lived with their family most of their lives, and now they're in their 50s. And 60s, and parents are getting older. And you know, they need to come in and get services. So we try, we still have to have that documentation that it was before the age of 22. It's expected this, you know, Down syndrome, something like that is expected to continue indefinitely. So it's not something that can be cured. And it restricts the individual's ability to function in major life activities such as living independently, you know, self sufficiency, self care, someone might not be able to express themselves through language, those type of things are is what this IDD waiver focuses on. And we encourage people and stuff can talk more about this. We are encouraging children, parents of children to start looking into these waivers as soon as possible because the can't the state of Kansas has an eight and three quarter year waiting list. So if you meet with Seth, and you're you do all of the paperwork in the eligibility, and you get on the waiting list, you're going to be on the waiting list for eight years as of right now. So we're strongly encouraging families to contact us. And we can also help with navigating them to the right waiver and all of that stuff.
Seth Kilber 18:47
Amanda, we're actually at two days shy of a nine year wait not to be overly negative here. But that does. You know that that does highlight a distinction here is that that Wait, that's not that's not the case for all the waivers. Some waivers don't have a waiting list altogether. And that's just kind of the nature of you know how some of them are time limited and they kind of get john maybe you're on for six months or a year and you transition off that waiver altogether. But because of the fiscal state of where the state is currently that that list, the IDD waiver has just kind of ballooned into nine years. And so I you know, I think it's that's part of why we're doing this now is to get the word out,
Theresa Freed 19:36
just to be clear, that that waiting list is not for for all services, even if you're on the IDD waiver. And you're looking at a nine year waitlist. There are services that are still available right to families who are needing them.
Seth Kilber 19:52
Yeah, that's specifically that that nine year wait once you're on the waiting list that is specifically for the IDD waivers. services we do, there are other services that you can take part in, outside of the ITT waiver and that we've got community partners and other stakeholders we understand I mean, your parents, you need to help right away. A lot of times you're in day to day survival mode. It's it this this process can be very complicated and complex and takes longer. I tell people, it's less like, it's less like registering to vote and a little bit more like, you know, getting a mortgage and then having to sign just a sack stack of paper or paperwork, it records from every which place. So that's that part of the reason why we're here and then why studios were put in place to begin with because, and folks and families need kind of that single point of contact and single point of entry, to kind of help walk them through the process.
Theresa Freed 20:56
So one of the services that you had mentioned the home and community based services, can you talk a little bit more about what that looks like, and who qualifies for that.
Seth Kilber 21:06
So once a person has been determined system eligible, we then look at their waiver eligibility or what we term functional eligibility. And that just is is trying to assess whether or not they will actually be eligible for funding 98 99% of the time, if somebody is system eligible, or they have an intellectual, they meet kind of the basic requirements of the diagnostic criteria of having an intellectual or developmental disability, they're going to be functionally eligible. So the the HCBS waiver, the Hmong community based service waiver, that is the funding that is, you know, that primarily what people are trying to obtain. And the services on those on the IDD waiver, specifically, these, these are things that include residential supports. So, you know, we're looking at these services vary widely, really geared around meeting the individual's needs. But this could be living in a in a group group setting with two to five other roommates and staff may be there 24 hours a day, helping grocery shop, helping pass meds, just providing some of that supervision, getting people out into the community to do what they need to do to live, very integrated lifestyles. And other services days and day supports. You know, like I said, a lot of people are in this, you know, maybe they've got a young one with autism, and they're just in day to day survival mode, they go to school during the day, well, Mom and Dad are at work, and they come home, they got to do what they got to do. Well, I try to get people a little forward feet thinking here, you know, what about when, when your son or daughter is out of high school, you know, maybe they're not interested in pursuing, you know, one of these higher education opportunities, or for whatever reason, you know, obviously, they're not going to school anymore. So we've got de supports, and again, varies pretty widely to ones that are really just community based, going out volunteer and going to public libraries, and parks and just just doing different things of that nature to ones that are a lot more vocational based. So so maybe they're working on interview skills, or different work related tasks and skills to try to get individuals in a competitive work environment. And then and then there's also in home support. So where maybe you've got a minor child who qualifies for the waiver, and their name comes up on the waiting list, and they can get staff support inside the home, providing some of those supervision and needs while in the evening weekend, whatever the needs kind of dictated in there, I would say those are kind of the lion's share of services, that that most people utilize some form of those. The only other one I will mention here real quick is supported employment. So if somebody were to find competitive employee employment, we do have a service where they can get job coaching on an ongoing and definite basis so that they maintain their competitive job.
Mandy Flower 24:38
When you qualify for services and you get on the waiting list. You automatically are eligible for having a case manager what you will hear referred to as a targeted case manager and Stephanie mentioned that earlier. And that TCM is very helpful in helping you find those stakeholders. find resources. And which we'll discuss briefly, there's a way to get services before the waiting list nine years, which is called the crisis, they can help navigate that as well, if you or your family need to pursue that. So they're targeted case management will be something that's offered as soon as you're on the waiting list. And we encourage folks, you know, to really look at their options, and again, the CDDO is here to help facilitate choice. So we give a list of all of the case managers in our community, and families can interview them and pick the one that they think will meet their needs. And then with the crisis process, that's a way that we can if somebody is in need right now for services that TCM can play a critical role in helping assess mentioned, a lot of the folks that we're working with. They're busy, and they have a lot going on. And it's survival mode. And we understand that we feel that that case manager role can really help with some of those, those situations and get resources or help get the paperwork in whatever it may be.
Theresa Freed 26:13
So you mentioned the the case management role. So is that separate from a care coordinator,
Seth Kilber 26:19
a care coordinator is assigned by the managed care organization, the managed care care organization, is the contracting insurance company that holds the Medicaid purse strings, so to speak. So they assigns assign somebody, for individuals who are eligible for these waivers to kind of help manage their case on a more personal basis. Yes, but this person is is not a replacement for the target case manager that a person can also receive through the IDD waiver,
Theresa Freed 27:00
it's good to know that there are there are many people who are there to support the families and the individual. And so sounds just like another layer of of help along the way
Stephanie Coleman 27:10
As a end user, for my son is on the IDD waiver. And he has a targeted case manager and a care coordinator. And how I look at them is the care coordinator is more around as Seth mentioned, the purse strings, but then anything that's really medical related, and then the targeted case manager is is everything else. And it really does help a family keep their head above water, as they're working, trying to survive living their lives, have other children taking care of their families, they can ask their targeted case manager, Hey, I heard about XYZ resource, can you go and resource or research that for me? And then come back with? And let me know does this work for my child. So they're kind of a lifesaver in that respect to. And that was my perspective, that's great. And, you know, I think kind of the point of, of all this information that we're sharing is, is to help people understand what's available to them, to know that they're not alone. And, you know, if you are frustrated in one area, there's there's always another place you can turn to get some information. And so I also want to know, you know, are there, they're kind of standard questions that you get from families who are initiating this process and don't know where to start from a family support coordinator position. I get families coming to me all the time saying, what I need help, where can I go? What can I do, and unfortunately, I wish I could say, Hey, here's the front door, walk through this door and everything will be solved and help hold your hand through it all. But there's not that person at this point. So as I talk to families and try to figure out exactly where they need if they need to get on the IDD waiver, which many of my families do need to do that. I send them to the CDDO right away, as they've mentioned, it's two days shy of a nine year weightless. They can get on at the age of five, I encourage families to do that. If they get to the end of the nine years and they say we don't really need the services, they can turn them down. But in nine years, if you need those services, you're waiting another nine years. So I always send them there and it just depends on what their needs are. I get a lot of questions around IEP s, which are individual education plans through the school systems. My go to partner for that is the families together Parent Training Information Center in the state of Kansas. So it just really depends on what their needs are. Great information. All right, Seth and Mandy.
Seth Kilber 29:57
One of the One of the big I think confusion for a lot of people coming through this processes is the Medicaid piece. How these are, you know, we've talked a lot about how these are Medicaid waivers to keep people out of institutions. People come to us, you know, if you're familiar with Medicaid, you know, at all you kind of know there, that you've got to qualify for Medicaid, which does involve a financial component, you have to remain under a certain resource limit to actually get Medicaid. You know, so then people hear what will I don't qualify for Medicaid? How will I qualify for this waiver? Isn't that what it's funded by? How does that all work together, you can be on the waiting list without having Medicaid. You know, so yes, an individual will eventually have to qualify for Medicaid in order to actually receive those services. Unless, of course, they would like to private pay at which point that is perfectly okay, as well, they've got the means to do that. However, with the state, the way it kind of works is if you're minor, and your name comes up for trucy, funding, let's say somebody applies at age five, we get them on the waiting list, they don't have Medicaid yet. Then when they turn 14, again, they don't qualify for Medicaid, when you go ahead and apply Anyway, there's a box on the Medicaid application that that indicates you are going to be receiving home and community based services, at which point you get the Medicaid, because that's contingent on you receiving those HCBS funds, or qualifying for the HCBS service. And then once you turn 18, and you're considered a legal adult, separate from you know, your parents, or your family, the responsible party, then you do have to meet those financial eligibility requirements. So yeah, it gets a little confusing. However, the bottom line is, is that you can be on the waiting list, you can still qualify for the CDDO system, and still be determined functionally eligible for the IDD waiver, even though you might not be financially eligible for Medicaid at the time.
Theresa Freed 32:26
All right, that makes sense. And Mandy, any thoughts on this?
Mandy Flower 32:30
I think that Stephanie and Seth hit both big things I hear right on the head. You know, families have a lot of questions about if I'm eligible, if my family's eligible, do we make too much money, things like that. And I always just assure people to check what the CDDO we can help with that. families together is a great resource for IEPs. And really, you know, parents will also ask, When should we start this process? And sometimes, you know, we don't start at five because I don't know if too many families that start thinking about their child's future at age five. So that transitional IEP, that's when families can really start working on what are what are the long term objectives that my child wants to do. And I think the great piece about our program, this home and community based services waiver is I don't think there's anything too big if if a person wants to get a job, and it doesn't seem like they have the skills to get a job, for lack of better word, the team, the case manager, everyone will work together to break those those goals down into smaller steps so they can achieve those goals. And yes, the insurance and all that's very confusing, and we have kancare that we can refer people to and we'll try to assist as much as possible as well.
Theresa Freed 33:57
That's a lot of great information. And just finally, if you could tell people where they need to go to start this process,
Seth Kilber 34:03
or you can visit our website and jocogov.org/cddo and that'll take you directly to our website with all our contact information. If you'd like you can call 913-826-2600 to start the intake process or if you just have questions.
Or you know, one that want to learn more about about this what we've talked about today. You can also email the individual in our office of my coworker, Gail Laurie, to start that intake process as well. Her email is [email protected]. You could call me or email me as well. I think Mandy's always open to receiving calls and emails and after hours, text messages. Whatever you need.
Theresa Freed 35:02
That sounds good, and will of course have some links, maybe not to your home address or anything, but maybe to some, some helpful phone numbers and websites in the show notes of this episode. Stephanie. And can you just wrap it up by telling us just a little bit of about where people can go to access some of the resources that you guys have.
Stephanie Coleman 35:20
The web addresses a lot longer, and I don't have it memorized. But I can tell you share a couple of places, like I said, on Facebook, if you're on Facebook, you can go to Kansas LEND, just put in Kansas and LEND in the search box, and it'll come up through there, you can always send us a message or ask questions. And then you can also email me, I do not work out of a office at the moment I work from home. So the best way to reach me is by emailing me at [email protected]. And I always try to help families navigate whether they're patients of ours or not. I try to navigate them to the best proper resource.
Theresa Freed 36:22
All right, that's perfect. Well, thank you all so much for your time and all the great information. I am sure that our listeners will benefit from it and receive the important information and services that they need.
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