Navigating Life as we Know It

Legislation and You - HCBS And the Olmstead Act

September 30, 2020 Steve Johnson (Host), Brett Williams (Guest) Season 1 Episode 6
Navigating Life as we Know It
Legislation and You - HCBS And the Olmstead Act
Chapters
Navigating Life as we Know It
Legislation and You - HCBS And the Olmstead Act
Sep 30, 2020 Season 1 Episode 6
Steve Johnson (Host), Brett Williams (Guest)

Nearly every special needs parent or caregiver has heard at some point the acronym HCBS or mention of the venerable Olmstead Act, and Michigan DD Council Legislative Liaison Brett Williams is bringing the goods to help us all understand these crucial points in the modern understanding of the Disability Rights Movement!

Support the show (https://www.patreon.com/NLAWKI)

Show Notes Transcript

Nearly every special needs parent or caregiver has heard at some point the acronym HCBS or mention of the venerable Olmstead Act, and Michigan DD Council Legislative Liaison Brett Williams is bringing the goods to help us all understand these crucial points in the modern understanding of the Disability Rights Movement!

Support the show (https://www.patreon.com/NLAWKI)

Steve :

Hi, this is Steve, some people would equate the legislative process to watching sausages being made. It isn't always a pretty sight observe, but freedom and inclusion have been hired one by the actions of advocates who have taken a stand for human rights and equity for all rights and freedoms are protected through legislation and public awareness efforts. Our guest is someone who can help us understand the legislative process and how to advocate for change. Brett Williams is the public policy analyst with the Michigan Developmental Disabilities Council. This is our first visit with Brett we plan to have several more during the course of the year, Brett follows legislation being developed on both the state and the federal level that impact people with disabilities. In this inaugural interview, Brett will be explaining two important developments in disability rights and inclusion. The first one is the Olmstead Act of 1999 that resulted from a Supreme Court challenge and a ruling. The second is the implementation of the home and community based service rules that are intended to confront isolation of the disabled and offer them access to the community similar to what people without disabilities enjoy, and perhaps take for granted. Today we're visiting with Brett Williams, of the DD Council of the state of Michigan and just wanted to welcome you to navigating life as we know it Brett.

Brett Williams :

Why thank you Steve I appreciate the opportunity.

Steve :

A lot of people have heard different acronyms. One of them is HCBS. And it sounds like a some kind of a broadcasting station. But it's not. And they've heard of the Olmstead act and wonder who Olmstead is and what that means for them. And I thought maybe we'd start out talking about what those two items are the home of community based services and also the Olmstead Act and how that affects people with disabilities.

Brett Williams :

You know steve that's really important especially in today's society, because a lot of the things that are being worked on at a state level is the integration of home and community services. To really understand where this came from, we need to kind of jump back actually multiple decades back in the early 80s. a waiver 1915C would allow states to apply for a waiver of general rules to allow states to provide services to people with disabilities and Medicaid beneficiaries in the home and or community where that person resides. Now keep in mind that was in 1983. This was before the signing of the ADA in 1990, before the Olmstead Act of 1989. So it was kind of a forefront of lean up towards the Home and Community Services. carrying forward a little bit up to the signing of the ADA American Disabilities Act. The Americans Disabilities Act was probably the largest sweeping civil rights reform for people disabilities in history. It basically protected an individual who has a disability from discrimination in several different facets of everyday life. It's broken down into five titles in a lot of people here, violations are kind of one violation of the code to do that, then I'm not gonna dive deep into that either, but primarily the Home Security Services would be impacted by title two of the ADA. Now that leaves the foundation from 1983 was social Medicare, Medicaid services provided 1915 C to Congress and the President signing the Americans with Disabilities Act 1990 affirming that people cannot be discriminated against because of their disabilities. Well, this was challenged through moving forward to the Olmstead decision. Many people have heard about the own separation, what the Olmstead decision was, was actually a level of court cases that primarily started in Georgia. In the mid 90s. There was a young lady named Louis Curtis now Lewis was an individual who had disabilities who was in and out of different hospitals in different settings, multiple times, dozens of times, over the course of years, she would go to a facility become acclimated things were stabilized, she received supports very well in a facility go back home and not have the support she needed in a hole. Then she would fall back into this vicious cycle between living in the community back to a medical facility progress there, move back to the community digress there and back and forth, back and forth. Well finally, in the mid 90s, OLS had spent the better part of a year and a half, almost two years in a institution. She was requesting that, you know, I want to go back home along with Becca community and poverty human services that basically said, Well, no, no, you're allowed to do that. So an advocacy group in Georgia took the case. And they said that by keeping Lois house in an institutional setting and now receiving supports in the community that she was capable of receiving violated the ADA because back in 83, we have options for people to receive services supports within the community, ADA, protect those rights, this person will displace discrimination. So in the mid 90s, when losses after luebeck in the community denied, they said, Look, this is violating this person's constitutionally protected civil rights, especially violates Ada title two. So as a case developed, Olmstead was actually the gentleman who was Commissioner of Health and Human Services. And I forget exactly what that department was called. And Georgia, Tommy Olmstead was the director. So when case was brought before the courts, naturally, it was latched on to the department Samuelsson being the director of the Department, was named in the lawsuit state of Georgia lost initially in the third court, District Court, and then finally made its way up to the federal Supreme Court. This is where the tensions got really high. Because if the decision came favorable, a once again, for last choice, one story has won twice. And then subsequently, Elaine Wilson joined within the lawsuit was was Curtis, before he lost twice, to a Supreme Court granted conservatory to up to hear the case, when the case was decided in June 22 of 29, the court held that unjust segregation of persons with disabilities does constitute discrimination, and is a violation of title two Americans with Disabilities Act, record a three measurement that a person would have to meet, to qualify for services with a community in almost every case that has been challenged subsequently, from the homes, that decision was based on discrimination as a person not being able to receive the support services in the community of where they reside. So it was a very, very important decision that guaranteed the rights of people with disabilities with to receive the supports and services they need within their home and community based services, hence, the HCBS

Steve :

community services. So I always thought that Olmstead was the person suing for the rights, but that actually was a defendant.

Brett Williams :

That wasn't the case. Yes, Lewis Clark. And I said, eventually, Elaine Wilson joined the case. And it was a law center that took on the case and they're always Supreme Court, he tells a couple different things, you know, and again, look at my advocacy hat now, is that when you have a single person who says this isn't right, that one person made it so that every person in the United States would have the same right, as people without disabilities? That's substantial.

Steve :

Supreme Court. It's really awesome when you think about it.

Brett Williams :

Oh, absolutely. So when you look at, again, the advocacy from not only Lois herself, and Elaine, but the Advocacy Center, working with them to ensure that her rights and civil rights are protected, if it only starts with one. And so that's why advocacy is so important. at the individual level,

Steve :

and then the home and community based standards, those apply to not just the home and community, but also the workplace, correct.

Brett Williams :

Oh, it can there is links. For instance, a person held a position of employment and they needed support services, well in that position of employment, then they could be lowered there. But also when we get into a work environment, there's other laws, statutes, regulations that come into play one of them, for instance, under the ADA, where reasonable accommodations have to be met per person requires accommodations within the workplace. And also, there's different areas of focus now for say, 20 years ago, you could have a person, leave high school, go into sheltered work environment, and never leave or now because of the Workforce Innovation Opportunity Act, that's not necessarily the case anymore, where people who have a disability who can go to a job placement work towards skills to be placing competitive integrated employment person's been housed in employment. So things have changed over the years. And there are other statutes and laws in place that would help a person who needs the supports and services to receive them and in the work environment.

Steve :

So what are some of the main tenants of the home and community based services rules?

Brett Williams :

Well, we really have to look at you know, what is HCBS or home community services, and then when we understand that we can really work towards, you know, the bigger picture. So first and foremost, only Community Services Really kind of focused on two areas. One is health services to be provided. And then one would be things like human services, health services, such as home care, home health care, skilled nursing, certain types of therapies, for instance for person has trouble with swallowing a speech therapist would be able to work with that person in their home versus coming to another location, dietary management, for instance, ensuring that people can, if a person has certain allergies, diabetes, it could help maintain the dietary needs, access to pharmacy, pharmacy related services, those are types of things on healthcare, our health services, durable medical equipment supplied through home, it can be services, case management, such as your person's ipls individual plan of service or in creating the person centered plan, disease prevention, things of that nature. Now, the Human Services side offers incorporated within the home security services in we look at things for the Human Services side, those are the things that like transportation to and from a medical employment or under one can be services and some waivers and again, Megan dives deep into all the acronyms and waivers some of the waivers mandate that a person who has employment transportation will be provided to and from the person's residence to the place of employment to the greater community, not emergency medical transportation, the benefit would allow a person to get transportation from their home to doctors offer for follow up visit a pharmacy. We can't use that for like grocery shopping and things like that. It'd be just medic, nanny merging medical really areas. Some very costs on this some home modifications can be on our Medicaid gimmick, there's a lot of provisions where information referral services, personal care is a big one, like your daily living needs. hygiene needs pressings things of that nature need move from a frequent facility such as the bed to a chair, things like that meals, that type of things. So those are the types of benefits. Again, this is a very high broad stroke brush, very high level explanation. But those are the types of services that will be considered under the home and community service setting. Admission is may 1 off based on the left I looked, I think they they have proactively engaged the home community services. It's going to be mandated throughout the country by March 17 2023.

Steve :

And how does the home and community based services standard rule affect housing options? Hi, this is Steve. I apologize for this interruption. But after review of the recording, Brett and I decided that some clarity was lacking with regard to the Home and Community base setting standards as applied to housing. Brett and I talked about what we might do to augment the episode and decided that rather than recording the whole thing, we would include the following statement for the Michigan Department of Health and Human Services Medicaid provider manual, quote all hcb settings where people live or receive Medicaid HCBS services must have the following characteristics to the same extent as those individuals not receiving Medicaid, home and community based services. One be integrated in and support full access to the greater community, including opportunities to seek competitive and integrated employment, control of personal resources and access to community services to be selected by the individual from among a variety of setting options and for residential settings consistent with the individual's available resources to pay for room and board. Number three, ensure individuals have the right to privacy, dignity and respect, as well as freedom from coercion and restraint. Number four, optimize but not Regiment, the individual's autonomy and independence and making life choices regarding what they participate in, and with whom. And number five, facilitate the individual's choice of services and supports, as well as who provides them. Thank you. And now back to our regularly scheduled podcast.

Brett Williams :

I'm gonna dissect that question a little bit. How do we impact housing is that if a person is receiving supports the service through hpcs waiver, those supportive services would have to be delivered like in an environment that's community based. So let's say that there is a facility that's 20 miles out of town that all they house is individuals with disabilities. And they have on site medical they have on site, kangaroo care they have on site meals and preps and everything else and there's no real interaction outside that particular community that could be considered an isolated study. We're holding too many services would not be approved to be delivered on our Medicaid funded program to that that residents because it have quality of being is to shine a light right now, through a process of looking at all the settings that people receive services on, and to see if they meet the regulations that they are community based.

Steve :

And I understand for some settings that might not meet that strict definition, they have something called heightened scrutiny.

Brett Williams :

Correct. The high scoring process is when a facility has the recognition of an isolated setting, what would that be said they have the opportunity to work with the state to look at why why is this facility concerned, isolating? And what can we do to change it to breathe off the heightened scrutiny process. And this process is currently going on right now. It's the level

Steve :

that gives possibly people a little broader choice in where they might want to live because there are some other options available.

Brett Williams :

Absolutely. Ultimately, the person has a choice where they want to live, if a person wants to live in an isolated setting that that person's choice, but that person would also have to acknowledge that if he or she chooses to live in a facility that does not meet hpcs criteria, that portion of their Medicaid benefits may not be available.

Steve :

If a group home decides to get out of the business of being a group home or adult foster care, then those individuals have to find some other place to live, what resources are available to them?

Brett Williams :

That's a great question. And that's a little beyond my scope of knowledge.

Steve :

I think the biggest issue we have is there seems to be a much greater need than there is a supply of housing, which is

Brett Williams :

very difficult to say the waitlist involved. I have heard people that I'm not exaggerating, that have waited in excess of a year, two years for to become available. So yes, there is an absolute shortage of housing. I do have a colleague that works over mistah that if something comes available, she usually sends me something that heads up, I can send out somebody living in that area. Yes, there is a shortage. And I don't know how this will be dressed over the next 10 1520 years, when you know our population ages a little bit. There's gonna be more strain. And

Steve :

I know I'm a boomer actually myself, I'm kind of right in the middle of that demographic. And there's 10,000 of us turning 65 every day, we're gonna need some kind of care ourselves. And that's also competing with disabled people for housing.

Brett Williams :

Yeah, I have celebrated my 27th anniversary of my 29th birthday.

Steve :

Let's do the math on that one. Okay, yeah. Anything else you can tell us about home and community based services or the Olmstead act?

Brett Williams :

Well, there's a lot to share regarding the services and share about the Olmstead decision. I think the takeaway is that because there was an individual who fought for her rights, to live in the community of her choice is took this fight all the way to the Supreme Court speaks volumes of the tenacity that people have, who want to live in a home that can be steady, the hpcs rules, there is a couple other bills on the federal level that support people moving into an integrated setting and would prevent reinsures from waitlisting people who want to receive support services in the least restrictive setting, and we'll go over build a future podcast here. But there's a lot going on at home to me services. Miss state of Michigan has lots of information on well, but regarding Home and Community Services, if you use any standard mega browser, you know, regardless of who you choose, you would just type in M, the HHS, Michigan Department Health and Human Services and put in Pullman p Bay services pages will load up Yeah, in. Like I said the federal regulations that have it was 2014 that mandated that state Medicaid programs comport with hpcs regulations that was supposed to be accomplished by March 19 of 2019 powering up three year delay, because we ran into a lot of technical difficulties. And some of the things that require very HCF of the state of Michigan has been working on this, and they've made great progress. So I expect them to meet all the requirements by the roll on March of 2023.

Steve :

It is a rather auspicious project. And I appreciate when you said you're not going to get too deep in the weeds on the other waivers because it really is very, very complex. And what we're looking at is the 50,000 foot level here for someone if they do feel there is a need to further research. They can look like you said on the website or there's other resources we'll be able to post on our way website

Brett Williams :

Would you like me to give out? Please feel free to give out my email address my phone number people have further questions. I don't know the

Steve :

absolute sentiment right direction. And then like you had alluded to earlier, we'll be coming back in another podcast and talking about some specific bills.

Brett Williams :

Addressing the housing issue, Steve, there are a couple bills and the Michigan legislature that would really expand the access and availability of accessible housing. And we'll get we'll talk about those in the next podcast.

Steve :

Well, I thank you for being with us today, Brett, and hope you have a good weekend coming up and that you survived social isolation, because we're random. Well, this COVID-19 thing right now

Brett Williams :

we are And fortunately, I'm the only one in the office today. And I don't have any children running around the neighborhood. So I'm pretty safe there. So I plan on just hanging around the house this weekend.

Steve :

Well, you have a great weekend, and I'll talk to you next week. Sounds good. Thank you very much. Thank you.

Kerry Johnson :

Welcome to the n Locky chat cafe. I am Carrie Johnson, cafe manager and co host of navigating life as we know it. Today we listen to Steve's conversation with Brett Williams, he's the public policy analyst with the DD Council of Michigan, Brett provided some background info on the home and community based service rules and the Olmstead act. Steve, would you recap for us why these are important,

Steve :

I think it's important to keep in mind just what they do. The Homestead Act basically said that the Money Follows the Person. It used to be that if someone had a developmental disability or an intellectual disability more often than not, if they did not stay home with mom and dad, they were placed into a home or a mental hospital because that's where the services were provided. Today, we're used to being able to get some kind of resources coming into the home environment to help with the child or the adult, that didn't happen back then. So there really wasn't much choice unless the family could handle it without any kind of help financially or in terms of services. So that's what is built. Now the home and community based standards are actually it's a home and community based service rules. They're trying to avoid a housing arrangement that looks like an institution or as a congregate setting, which means you have a lot of people living together that have disabilities or they're not out in the community living with other people. So the controversy about this is that there was a lot of freedom implied, but there seem to be a number of thou shalt nots involved in that. In other words, five people with disabilities could not live together, because that looks like an institution where they live couldn't be too far remote from a city or transportation because that looks like it's isolated into some organizations that push back against that, because if someone was raised on a farm, and they would like to live in a farm setting, they've got to fight for the ability to do that. Because the law says you cannot live in a rural environment or a farm like sitting even if you grew up on a farm. So there's organizations that do contest that and fight back and the good. There's good intentions behind the home of community based service rules, but it does not accommodate all people. And we've already had interviews with the Coalition for Community Choice and also another organization called together for choice, the common word there is choice. They're saying that we can serve people better if we're able to give them more choice in less thou shalt nots when it comes to home and community based service rules. So that's the thing that people will find themselves coming up against. We'll post on our website, some links to home and community based service standard rules, where people can take a look at it and see what they say it is pretty complex. Again, the intent was good. But in reality, it cuts back on the amount of options that a person has in order to live someplace else and receive services and receive services. Typically, what you'll hear is as well, you can live wherever you want. If you want Medicaid to pay for those services, then you've got to be able to be thou shalt not thou shalt not and that's a pretty heavy hammer too, because I've looked at it there are places in Texas and Arizona ranch settings for people who have lived on a ranch all their life and they have to really, they have something called heightened scrutiny, they have to prove that people will be in society and existing with neurotypical people going to the show going to the library, and if they're in a ranch, it's a bit harder to prove. But that's where the controversy is when it comes to home and community service standards. Those are basically coming out of the American with Disabilities Act and the Olmstead act which said that people could live in the community. That is my take on it. Now for those listening, there might be something else that you want to make a comment about, and we certainly welcome hearing from you.

Unknown Speaker :

If you'd like to support this podcast, please refer your friends send them a link to this episode. We really want to engage our listeners in this navigating experience but for them We need to grow our following and we also sure could use your financial support, visit our Patreon link on our webpage, make a sustaining donation and receive one of our valuable incentives. Be the first one on your blog to own an N Locky baseball cap or a coffee mug.

Alex Johnson :

Thank you for tuning into navigating life as we know it. I'm Alex, your host and occasional weatherman. Today in Michigan it looks um, rainy. But that could change based on the hour. First off, I'd like to thank Brett for all the help he's been and for all the help he's going to be in the future because we do have more episodes with him coming up. So look forward to those the next one will be on the 21st. Secondly, I'd like to thank everyone who has participated with us through our Facebook page, you gave us the fuel for our new leaf segment, which will begin as soon as these announcements are over, don't worry, I won't keep you guys very long. I wanted to once again remind you all that we have our new and Locky chat cafe Facebook group up and running. And we would absolutely love for you all to stop by and have a cup of coffee with us, the primary point of the chat cafe been to give us information that you want us to dig into. And we'll start digging. So the sooner you pop on there, the better it will be. I'm not going to get in your way any longer. Please enjoy the rest of your podcast and have a wonderful listening experience.

Unknown Speaker :

Welcome to the listener engagement and feedback or leaf session, we're talking about occasionally adding a leaf session to the end of an episode. And that kind of gives us an opportunity to respond to your questions and suggestions. Eventually, we might get to the point where we'll be able to have an entire show of just question and answers. But we do have a few suggestions and questions from our first week. Steve, what do you got?

Steve :

Well, one person wanted to know more about how Medicaid dollars float down to the system from Washington to the ultimate user in Michigan or whatever state you happen to be listening in how much the dollar is actually left to pay for direct services. And it's kind of interesting, because we read about different layers, we have community mental health and we have phps, we have a lot of different bureaucracies and does make you wonder is these dollars are flowing down from Washington, how much is left at the end of that that will be the topic of an entire show, if not maybe a couple different programs because they flow in different directions.

Unknown Speaker :

One is sometimes it's confusing. And there's also Medicaid waivers or right other options that you can layer in to your services. So those are all very interesting things to figure out and at least know where to look. So that's

Steve :

excellent. And I'd love to have a flowchart or something so they can refer to it because everything seems to be a waiver. And to me a waiver means it is an exception to a standard. But it seems like there's more waivers than anything else. And so you wonder where that term come from, it comes back to Olmstead where anybody received services in hospital in a location in a waiver is or allowing people to receive those benefits in a different manner. And so we'll be getting into that and talking about a great deal of that. It's gonna be like I said, the basis of a whole program, probably, that was one and I really appreciated that question was brought up,

Unknown Speaker :

right, somebody else was mentioned in appreciation for the show being Michigan based. And that kind of helped them out. And while we appreciate it, and will probably always have a Midwestern accent, we also understand that there's many things that are outside of Michigan that also have to be approached disgust brought to our attentions, we're not just always going to be right here, we want to reach out to others outside of Michigan,

Steve :

we've had people move here from other states, when most recently as from Colorado. And although much of the language is the same, the plot is very different than Colorado. And they do things differently. They're able to provide benefits in a way that I'm kind of jealous of. But still, it's Medicaid. And it still has the same kind of rules, but they approach it differently. When we do a show that having a speaker from out of state, we might get a little different take at something I interviewed Jen Knapp of community vision in Portland, Oregon. And she had mentioned there was a program in Illinois, where she was from originally, it's called an individual development account. And the interesting thing about this is somebody who is on Medicaid and has restrictions about income and assets can actually save money toward a particular goal and that savings will not be counted against them and the dollars are matched by the state up to I think it's four times as much as they save three or four times as much and I thought Wow, that's really great that started in Illinois, then I found out coming back to Michigan that we have the same individual development account available in Michigan and never heard about it before. So I learned about this program by interviewing someone from Illinois who now lives in Portland, Oregon. So it's important. There's an international flavor, interstate flavor, I guess to some of these, this information. And being able to step outside of our boundaries helps us learn more.

Unknown Speaker :

So let's see, how are they approaching?

Steve :

Correct? Let's not assume that we have all the answers here in Michigan, and maybe we could help people in other states, by the way we do things. So it also helps

Unknown Speaker :

us forge alliances. Does it expand our knowledge? Absolutely. It all allows us to cast a big net,

Steve :

right. And some of these organizations that we've interviewed already, like the Coalition for Community Choice, and together for choice, they are national organizations advocating for people with disabilities, we'd be remiss not to include them. Yeah, we'll always have a Michigan flavor to it. But we want to be relevant to people in neighboring states and across the country as well. Okay, another one listeners said they were quote, I was also intrigued by Liz Bauer's idea that we organize and more broadly in any direction and how this could happen would be of interest to me. And Liz, Liz Bauer was someone we interviewed in our first and second episode, if you haven't heard that, I recommend go back. And listen, she is a wealth of information about the history of the disability rights movement from the 19, late 50s, actually, to the present. And she did say that this is what happens and people Band Together we get things done if they pursue the interest only of their child or that particular disability, we don't really move the needle on these things. And other listeners said, I love how this interview opened up my mind to including people with all disabilities, no matter the type, we are all just humans trying to create a meaningful life for ourselves. Absolutely. When we think tribally we think about autism, or we think about any particular diagnosis. And we're going to pursue everything we can for the interest of those people, we actually shortchange ourselves. And I think part of that is because when you go to propose legislation, or go to whatever your state capitalism, in this case, it's Lansing in, you have a limited view of something that's going to help this particular group legislators are less inspired to back that they want something that will make a bigger splash that will maybe reflect more well on themselves. But also, that's not going to meet opposition from other people,

Unknown Speaker :

right, have a have a broader success base rate. I did this for.

Steve :

For example, today, there is a big emphasis on disability housing, and I understand that because we are facing that, but that's part of a larger story. It's about affordable housing for all people, whether it happens to be somebody with a disability, or somebody that is a single mom, or somebody who is been homeless, that's a larger issue. And if we approach it from a larger standpoint, it becomes something which is going to be easier, probably in the long run to get a solution to otherwise we're just fighting our cases, one at a time. And we don't get as much done that way.

Unknown Speaker :

Right? Well, and then the interview with Brad, he emphasized that one person led to the Olmstead act, right, again, you know, you've got one person can make a difference, or coming together, we can make a difference,

Steve :

right? It happens. It just takes us in that case, what the Homestead Act, basically, and this was explained in an episode that preceded this discussion, that one person decided they didn't want to live in an institution, and it got to the Supreme Court. And the Homestead Act basically said, it's a civil rights issue, if they want to live at home, you've got to provide services for them at home, they don't have to be in the hospital for that, that opened up for everybody with a disability. And now so one person can make a stand. But it wasn't just for herself, because it became a national issue. And the same thing, misnamed, it takes a crowd of people, if you're proposing a change to say, Hey, we got thousand people here will be affected by this over a wide range of disabilities. And we need this to happen, you get more support that way.

Unknown Speaker :

And then we have to remember that we all have similar bridges pass over. And we all have very similar gates that we have to go through. I mean, an IEP is an IEP, whether you have a DD or cerebral palsy, it's still the same form. They still use the same process,

Steve :

and it still is intimidating regardless.

Unknown Speaker :

Exactly, exactly. And then hopefully, everybody is also getting their PCP is their person centered planning their school transitions that in some areas, nobody knows what that is.

Brett Williams :

Great.

Unknown Speaker :

And then there's life skills, and how do I go about making sure that my child has what is needed to go to the next level here and, and housing transitions, and these are all different kinds

Steve :

of things that just come up. These are all transition spots, and that's where we need to be able to speak with one voice. There's also a suggestion that we We interview families with different diagnoses and the experience they got in getting those diagnoses. This one listener said that it took 14 years to get a diagnosis. There were obstacles along the way. Sometimes it doesn't fit into a convenient label or convenient box. So they call it I love this one PDD nos pervasive development disorder not otherwise specified, it means that we don't the heck it is. But there's there's

Unknown Speaker :

doesn't that diagnosis will not allow you to have many services that you maybe should be right.

Steve :

Some services like ABA is specifically for autism. And you get that with an autism diagnoses. And you don't get it without it.

Unknown Speaker :

And it has a tail as an end on Right, right. Once you hit this age, what's the magic age? I think it's 1818. So that's something that maybe you're gonna want to have that diagnosis sooner rather,

Steve :

you don't want to get it at 17. It can be a problem. It can be frustrating. Yes, right. example here is our own son, Liam. Liam was a premature birth. And as a result, from the time of birth, he has cerebral palsy because of a brain bleed. So we knew that, okay, we knew that for quite a few years, that was we saw as being our challenge. And then he started developing some autistic tendencies that they started talking about, we lived in Nebraska, and, and they always wanted to test

Unknown Speaker :

all these tests. And there was an instance where I wasn't I didn't see the benefit of him having that additional label if this was preschool to kindergarten. And I said, well, is that going to increase the services that he gets? No, will this increase the or change how you're going to teach him? No, then why do I want this label on him? Because there's going to be somebody who's going to pick up his records without seeing him see that label. And they're going to make assumptions

Steve :

or change their expectations and expectations are going to be very different. And you know, it's like, well, but you know, we understand what that means. See, you and I are sitting here talking about this, we have an accord, right, but that person's not here, right now. We always going to be able to parlay to use that fun word. No, no, people just pick it up the Oh, autism. Yeah, that one's gonna be a lump. Next, and quite frankly, from from Nebraska, where we got this first discussion going, we moved to Arizona, and I love both states. And there's many good people in education in both states. But in Arizona, all of a sudden, oh, this is an autistic kid. And the box he was put in was very different. And the expectations were very different. And I don't think that they were really reaching him on the basis of who Liam is, they were treating him as the autistic kid and not in a good way.

Unknown Speaker :

Right? Right. And again, it took it took a lot of discussion for us to get around, all of that takes a long time to get a diagnosis. Sometimes the diagnosis is hamstring you, you know, but it's all good to have that information. So that, you know, I'm going to have to go in here and really fight for this kind of teaching so that we can overcome this diagnosis that he has, and not everybody is up on. Right. You know, I kept talking about Liam needs total communication. He can't You can't just tell him stuff, he has to see it. And you have to get them to repeat it. In order for him to understand it. He has to see it. He has to hear it. He has to do it. And you know what, but he has cerebral palsy. Oh my gosh.

Steve :

So I know in four years, we kept telling people he types really well, with one hand, he types really well. And they kept trying to teach him to write It's like he writes really crappy. But he types really well. You know, he can do whole sentences by typing. Could we get a keyboard? No, it was hard.

Unknown Speaker :

It's hard to get a keyboard. We did get a keyboard. But it was hard. Yeah. So again, it's it's getting the tools it's working within, it's coming together and then bringing more people together so that down the road, the next person is going to run into that fight.

Steve :

And then we had a third diagnosis for Liam, first of all with CP we knew that from birth, then autism came along and we let we let them go through with the diagnosis. We realize that yes, this will open up additional services, it'll open up additional funding, always got to find out what will be the benefit from this. If there's a distinct benefit from it, then by all means, go for the testing because more services in many ways could mean a better outcome. But then a third one real living in Arizona, I happen to be on business in either Minnesota or Wisconsin when this happened. And Liam had a seizure. The first one.

Brett Williams :

Yeah. And

Unknown Speaker :

how old was he? I want to say he was 12 that i i attributed puberty. puberty. Yeah.

Steve :

So 1112. Right. I get this phone call and I'm trying to get out of this business meeting and fly back and you're telling me it really won't do you any good to do that. By the time you got here. We're gonna have a candled and you did have your handling in quite well with family. You get one diagnosis from birth and other diagnosis you kind of fight with for a while another one just falls in your lap unexpectedly one day when he He has a big long seizure. And then the doctor say, of course, well, he should have been having seizures all along. It's like, Oh, I guess we didn't ask the right question. What should we expect? Are we going to expect seizures? But we didn't even know that. So yeah, this whole thing about diagnoses and how it develops is quite a challenge and very frustrating for apparent but you know, we will talk about that. Now. That is, I think covers most of the questions we had that were posed to us, we want to thank you for hanging on for a few minutes longer to participate in our leafa session, we always appreciate it. This would be the first budding of the first budding of our leaf. Yeah. We always appreciate your candid comments, your compliments and your constructive criticisms. Now, did you notice there was alliteration there candid comments, compliments and constructive criticism? And manglish background I'm sorry, if hearing this segment of the show inspires you to make a comment or a suggestion of your own. Please look us up on Facebook, which is the best way to leave a comment or a suggestion or an insight and let us know what you're thinking or what you'd like to hear on navigating life as we know it on a future episode. Thanks for those who are involved in producing this podcast. Alex Johnson is our producer Carrie Johnson is our Locky check. cafe manager and co host Holly Johnson is the artistic director and the person who manages our website at Facebook and social media. And we have an intern we have an intern we do makes us feel like we're big shots. Now. I know Daniela Munoz, our intern, she's in charge of our post production contract with our guests. So this is navigating life as we know it. I'm your host Steve Johnson. This is a production of envision Media Group, LLC. Thanks for listening.