CapABLE: Supporting Families Challenged by Disabilities – PediaCast 475

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Show Notes

Description

  • Champions from CapABLE visit the studio as we consider support for families challenged by disabilities. Topics include transitioning, remote home health care, self determination and legal needs. We hope you can join us!

Topics

  • CapABLE
  • Transition Challenges
  • Home Health Care and Remote Technology
  • Self Determination
  • Legal Considerations for Those with Disabilities

Guests

  • Ali Rahim
  • Cara Lloyd
  • Marci Straughter
  • Logan Phillips

Links

Transcription

Announcer 1: This is PediaCast.

[Music]

Announcer 2: Welcome to PediaCast, a pediatric podcast for parents. And now, direct from the campus of Nationwide Children's, here is your host, Dr. Mike.

Dr. Mike Patrick: Hello, everyone, and welcome once again to PediaCast. It is a pediatric podcast for moms and dads. This is Dr. Mike coming to you from the campus of Nationwide Children's Hospital. We are in Columbus, Ohio. 

It's Episode 475 for October 7th, 2020. We're calling this one "CapABLE Supporting Families Challenged by Disabilities". I want to welcome all of you to the program.

We do have a full lineup for you this week. And just to give you a little bit of background on today's episode, there was a live event that was scheduled pre-COVID called CapABLE and it was scheduled as an exhibition fair. 

0:01:13

You remember those, right? Folks at tables and booths, raising awareness for their services, promoting things, helpful things, whether it is a home and garden show, a boat and RV show, or a show for families challenged by disabilities. Where we really have folks promoting services that can be helpful for these families. 

And the plan was that there would be a podcast booth and we would highlight some of the vendors and help them raise awareness of their various services. And then COVID happened, and like so many other aspects of our lives, CapABLE adapted, which is what kids and teens and adults and families challenged by disabilities, that's what they are especially good at doing, right? They adapt.

0:02:03

And so, we follow their lead and adapted the format of the CapABLE event to something we are all familiar with now. We turned it to a virtual event. I couldn't set up a podcast studio in the exhibition hall, but we were able to invite some of the participants to join us remotely. So, that's what we have in store for you this week as we consider support for families challenged by disabilities.

We do have some terrific guests joining us, Dr. Pankhuree Vandana. She is the medical director for the Center for Autism Spectrum Disorders at Nationwide Children's Hospital, also an assistant professor of Psychiatry at the Ohio State University College of Medicine.

She's going to be talking about transition challenges as kids with disabilities grow up and start to take on their own healthcare, that transition from being a child to being an adult. We're going to talk about that.

0:03:01

And then, Ali Rahim is with the Ohio At Home Healthcare Agency and Medforall and he's going to talk about home healthcare in this age of remote technology and what that looks like. 

And then, Cara Lloyd and Marci Straughter will be here to talk about self-determination, making decisions for yourself. And even when you have a disability, your voice is important and you want your voice to be heard and your choices heard. And so we'll talk some about self-determination with them. 

And then, finally, Logan Philipps is the very first attorney-at-law that we have on our medical podcast. He's with the law firm Resch, Root, Philipps & Graham. And we're going to talk about the legal considerations that go along with families challenged by disabilities, things like guardianship, trusts, those sorts of things. And so, all the different legal considerations surrounding disabilities. So, we will talk about that toward the end of the program.

0:04:04

Before we get to them, I would like to mention once again an opportunity for the health professionals in the crowd, especially my fellow pediatricians. The American Academy of Pediatrics has put together a virtual course called Harnessing the Power of Traditional and Social Media and Healthcare. It's happening November 14th and 15th on a computer screen near you. 

And it's important because in a world of fake news, biased reports, misleading social and digital content, it is very important for child health experts to employ effective communication and engagement strategies on television, radio, podcast, newspapers, magazines, blog posts, websites, and of course, social media channels like Facebook, Twitter, LinkedIn, and Instagram.

However, this is not something we are typically taught in medical school or residency training. And learning these skills on your own takes time and often lots of mistakes.

So, here is what the AAP is offering, a virtual conference which you can attend from the comfort of your home while learning from health communication experts who maybe made mistakes before you. They learned by doing. 

0:05:13

And they are ready to share what they know with you and live in recorded sessions on November 14th and 15th with recordings online and accessible to attendees even after that date.

Details and registrations are available at the landing site for the course. And I'll put a link to that in the show notes for this episode, 475, over at pediacast.org. Early bird registration, it's only $150 if you sign up by October 26th. And as a bonus, you can earn up to 17.5 hours of Category I Continuing Medical Education credit and 10 points of MOC II credit for those maintaining their certification with the American Board of Pediatrics. 

Again, link to the details and registration available in the show notes over at pediacast.org for Episode 475. I will be there and hope to see some of you.

0:06:05

Also, I want to remind you that PediaCast is available wherever podcasts are found. We are in the Apple and Google podcast apps, iHeart Radio, Spotify, SoundCloud, Amazon Music, and most other podcast apps for iOS and Android. If you like what you hear, please remember to subscribe to our show so you don't miss an episode. 

Also, please consider leaving a review wherever you listen to podcast so that others who come along looking for evidence-based child health and parenting information will know what to expect. 

We're also on social media and love connecting with you there. You'll find us on Facebook, Twitter, LinkedIn, and Instagram. Simply search for PediaCast. 

We also have that handy Contact page over at pediacast.org, if you would like to suggest a future topic for the program.

Also, I want to remind you the information presented in every episode of PediaCast is for general educational purposes only. We do not diagnose medical conditions or formulate treatment plans for specific individuals. If you have a concern about your child's health, be sure to call your healthcare provider. 

Also, your use of this audio program is subject to the PediaCast Terms of Use Agreement which you can find at pediacast.org.

0:07:09

Let's take a quick break. We'll get our many guests connected to the studio and then we will be back to talk about supporting families challenged by disabilities. It's coming up right after this.

[Music]

Dr. Mike Patrick: My first guest this week is Dr. Pankhuree Vandana. She is a child psychiatrist and medical director of the Center for Autism Spectrum Disorders at Nationwide Children's Hospital. Also, an assistant professor of Psychiatry at the Ohio State University, College of Medicine.

First, thank you so much for stopping by and talking with us today.

0:08:09

Dr. Pankhuree Vandana: So, glad to be here. Thank you.

Dr. Mike Patrick: We have talked about transitioning before on PediaCast. What is it that we mean by the term transitioning?

Dr. Pankhuree Vandana: Literally speaking, it comes from the word "tranzisio" which is a Latin word and means going across or over. But when we're talking today about transitioning, essentially, what we're talking about is transition of our youth and teenagers across the spectrum into adulthood.

Dr. Mike Patrick: And I suspect there's a lot of differences between families on when exactly transitioning would occur. When is a good time for parents to start thinking about this?

Dr. Pankhuree Vandana: A good time for transition, of course, is individualized. But 14 to 16 is a good time when you really start to think about what that would mean for the child or the family in the next three or four years, what would it take for the family in the next four, five years for them to get their child or their youth ready for when they turn 18 or 19. So, I would actually say about 14.

0:09:16

Dr. Mike Patrick: Yeah, so that's a good time to start thinking about it. And then, how do you do this? How do you accomplish transitioning? What are the first steps look like? And then how do you progress from there?

Dr. Pankhuree Vandana: That's a great point that you make because when we in sort of healthcare think about transitioning, we do think about transitioning sort of as a point in time. The person turns 18 and then in healthcare, we're like, "Oh, pediatric services are ending unto adult care services." 

But as you pointed out, it's a pathway. It's a process, right? And so, all along their developmental course, as the child and the youth is getting into their high school years and starting to accomplish more skills, I think that path of transition just comes along with that.

0:10:03

There are many objective milestone if we were to talk about it. In milestone, when you're thinking about transition, those milestones that you think about is going to college or obtaining employment, or creating that social circle, moving away from parents, healthcare transition. 

And there's some subjective milestone that we talk about, being able to take care of yourself, make important decisions, manage finances. So, all of these things that we're talking about, this sort of milestone of transition, are things that our teens will start to learn and work on as a process starting the age of 14.

Dr. Mike Patrick: And why is this such an important process for families?

Dr. Pankhuree Vandana: For many reasons, if you just talk about just transition in general, we know when these kids are in school, when our youth are going into middle school and high school, they still have that structure. They have the structure of school. And that external structure really provides that their ability for them to explore and sort of explore their individuality, as well as their own skillset, while having that external structure to support them in this process.

0:11:13

But once they're past that point of graduating high school, of that turning 18, a lot of that structure goes away and vanishes. And then, they are sort of in their own world. 

Of course, they have families. And if you talk with parents of kids and youth who are 18, they will say 18 for a day plus one day looks the same. It doesn't look any different for them.

But they start to become their own guardian, right, so they can make medical decisions by themselves, so they're expected to make healthcare decision by themselves. They are legally supposed to make decisions by themselves. 

So, it's a big deal at that point, the way we and society treat them as their own individual being, being capable to make their own life decisions.

Dr. Mike Patrick: And this is a really big process that a lot of families struggle with in typical normal times. Tell us a little bit about transitioning when a family is challenged by disabilities. We have a child in the house with any number of physical or mental disabilities. And then, how is that process different for these families?

0:12:20

Dr. Pankhuree Vandana: It's different in many ways and if you just start from the child, the youth themselves, if you look at, for example, if you discuss a child who has developmental disability for a minute, they're going through the same physical process of development and they're turning 18. But their actual psychological development may lag behind. 

So, even though they turn 18, the kind of skills that they need to accomplish, to function as an 18-year-old is not there. So, there's a push and a pull that happens in a situation like that, there's a dissonance that occurs. 

And so the child, and especially our sort of what I call some of our higher functioning kids with some skillsets, they realize that they're 18 and they want to have that autonomy and want to pursue that. But at the same time, need that help from the parents, which can lead to some interesting dynamics.

0:13:13

Besides that, if you look at the structure of our support services, a good majority of our kids get the support services through school. And as soon as they're out of school, they don't qualify for services just because they have autism or intellectual delay or cerebral palsy or things like that. They have to actually qualify by showing that they're lacking certain kind of skillset. 

So it's sort of almost like a falling off a cliff situation for them, that services stop and then they have to reengage in this whole new set of adult services that they have no contact with for the last 18 years of their life.

Adding to that, there's some other things that definitely make it particularly challenging or interesting for our families with kids who may have disabilities. This is also the age of onset for some of our problematic mental health situations.

0:14:09

So, some serious severe mental illness can come but if you look at the literature, onset of anxiety and depression symptoms in youth who have not had it before as a result of transition stress can also come up, further complicating that process.

And let's for a minute think about our families. This is usually the time for even our typical family, the parents are sort of taking that backseat and saying, "Okay, I'm done with that caregiver responsibility. My child is going to take over. I'm going to be able to take care of themselves on their own." 

For our families who have kids with disabilities, actually, the support system is lost. And now the parents are on their own at this juncture of life stage, taking over all of these tasks by themselves. And so that just adds to that caregiver fatigue or frustration or anxiety, if you may use at this juncture, just making the transition process even more challenging.

0:15:09

Dr. Mike Patrick: One resource I think families have or at their disposal that all families hopefully have is their primary care physician or their medical home. How can families really tap into that resource? And from the provider's standpoint, what kind of services should we be providing for these families?

Dr. Pankhuree Vandana: That's a great question. We as providers are thinking about transition when you see a kid at that age. It's very important to think about it and talk to the family about it. 

In that 30 or 50-minute appointment when you see a child, the family may have some pressing clinical issues that they want to address. And so it's almost in some ways important to schedule a talk about transition, just because it's going to really sort of curve that pathway to successful outcomes once we as the pediatric providers are done handing over care. So, I think being mindful in carving our time in our clinical care is important.

0:16:07

The other thing is to make sure that we have the team or we arrange or help the family have that team of professional that they need to assist them in that process. And it could be the IP person in school, it could be their care coordinator to the Board of Developmental Disability. It could be their Partner for Kids care coordinators. It could be anybody but a team that are going to help the parents through this process in addition to us.

Some other things to think about is helping the family get ready for the transition piece or the youth ready for the transition piece. Allowing the youth to start to practice being autonomous in their own clinical care can start very early, like making sure that we're talking directly to the patient, making sure that we're giving the youth an opportunity to asks us questions, learning how to call for refill. 

Like very simple things which allow them to take on a more active role in their healthcare, and something that we can train them in our appointment and which would in the future serve as they are transitioning into adulthood.

0:17:12

Dr. Mike Patrick: Absolutely. And then, COVID comes along and just complicates everything. How has transitioning change or how are we adapting to the process of transitioning despite COVID?

Dr. Pankhuree Vandana: That's a great question because we're all sort of struggling in our own ways with what is happening right now. One of the things that we've been noticing that's really struck our transition age youth is the pause in services that they were scheduled to get as they were transitioning. 

So, there were people or kids who were supposed to get their vocation training and that's stop and that's become a virtual. Or kids who were going to start actually seeing their adult provider and there's been a pause because some physicians are not accepting. We're not accepting new patients. So, there's been pauses in many different ways.

0:18:06

In addition to that, I think our family just have a new set of stressors to deal with so kind of transition takes a back seat. So, I think there's just been a pause in our services at this point in time. 

Unfortunately, the kids who have graduated are graduated, so now they're sort of in that vacuum on their own waiting for the next set of services to start.

The good thing is as slowly things are in their own new ways starting to get back to normal, some of the services are restarting. However, this is a very important role that healthcare practitioners and clinicians can play at this point in time while other services are really not up and running, and work with the family on creating plans and building up skills, it's even at home while they're waiting for some of the services to start. It's something to think about at this point in time.

0:19:00

Dr. Mike Patrick: Absolutely. And even telehealth and virtual communications is going to be so important. And as I was thinking about this, when you're talking about like the IEP and the teachers and specialists, really, in sort of this new era, we have an opportunity for folks even to come together more easily than they used to be able to do in the form of Zoom meetings. And maybe we're not quite there yet, but it seems like that's a short step in the future, right?

Dr. Pankhuree Vandana: Absolutely. I'll be delighted to say that it's been so much easier to have the rest of the team on Zoom while you're seeing the kid just because it makes it so easy. I'd also say that our teams are more comfortable being on Zoom. It just makes them more comfortable interacting. 

So, I think their engagement actually is even better in this process while they're doing it from the comfort of their room. So, definitely a powerful solid tool that we need to continue to innovate upon and use in the future more effectively.

0:20:05

Dr. Mike Patrick: Yeah, absolutely. It's one of those things where the pandemic has certainly been horrible and change our lives in so many ways. But there's also all of these good things that come out of it, too. And one of it is the ability to communicate in different ways and to get people together into coordinate care even. So, I think it's an exciting time that will likely change in some degree the way that we practice medicine forever.

There are lots of places that families can learn more about transitioning and I had mentioned at the beginning of our time together that we have done transitioning on the podcast before. And so, if you'd like more information about this process, PediaCast 402 is one that you want to check out. We called that one "Transitioning Your Teenager to Young Adulthood." 

We also had a CME podcast, so Continuing Medical Education for healthcare providers. That was Episode 25 on our PediaCast CME program, "Transitioning Pediatric Patients to Adult Healthcare". 

0:21:05

And I'll put links to both of those in the show notes for this episode, 475.  So if you want to learn more about transitioning and that process, you can check those as we talk much more about details about transitioning. 

And then, I'll also put a link in the show notes to the Center for Autism Spectrum Disorders at Nationwide Children's. Before you go, tell us a little bit more about that program.

Dr. Pankhuree Vandana: The Transition Program at the Center for Autism Spectrum Disorder is a program that is run by our autism specialists, psychologists, and our behavioral health clinicians, as well as our trained clinical social workers who have tons of experience with working with this population. 

And the age group for actually that program is age 14. As I said, that's when you start thinking about transition. 

And so, the big picture idea of that program is, yes, these kids have the core symptoms of skills deficits of autism, but they have a lot of strengths, right? And these families have a lot of strengths. So, how do we start to work upon those strengths, use those strengths, and ask them to work up on some of the skill deficits using those strengths to get them ready for age 18?

0:22:20

And so, it's a very individualized program. So, if you have one youth who need probably more help with social interaction but they've got everything else planned out, like they're very good at organization and planning, but their social skills is something they need to work on, then the program will be individualized to that need. 

For some of our other youth, it's more pre-vocational skills or just daily structuring, the life skills, so then the program could actually gear towards that. For some of our youth, we may start with some very basic self-care skills, showering, bathing, things like that. 

So, the program really individualize the plan but the big idea is using your strength, how can we work on your skills deficits and get you ready forward that age 18, 19, when you're out there.

0:23:07

Dr. Mike Patrick: Yeah, absolutely. And then how do primary care providers get their families in touch with the Center for Autism Spectrum Disorders? How does that connection takes place?

Dr. Pankhuree Vandana: Great question. So, there are many ways that they can do it. I think the most effective way to do it is through our Behavioral Health Intake Program. So, if primary care physicians contact the Behavioral Health Intake phone number that we have and request that this child be referred to the Center for Autism Spectrum Disorders Transition Program, that information is sent to the center itself. 

And then, you will have a clinician from the center actually contact either the clinician or the family directly to gather information about what their needs are. And then, based on that, we'll be able to decide what the best fit is for their program.

For a lot of times, we have youth and kids who are referred to us thinking that this child maybe a good fit for a transition program, but we may think, "Well, the child may need more intensive behavioral skills before we can transition." But once they are connected with us, we take over and we continue to coordinate with the primary care physicians but then also work with the family themselves and then move them along this path.

0:24:20

Dr. Mike Patrick: Yeah. Really terrific work and an important service that you provide. And we will put a link again in the show notes to the Center for Autism Spectrum Disorders at Nationwide Children's Hospital. You will find that over at pediacast.org for Episode 475.

So, Dr. Vandana, child psychiatrist and medical director of the Center for Autism Spectrum Disorders at Nationwide Children's. Thanks once again for stopping by today.

Dr. Pankhuree Vandana: Thank you so much for inviting me.

Dr. Mike Patrick: Next up, we have Ali Rahim with Ohio At Home Healthcare Agency and Medforall. First, let me just thank you for stopping by and visiting us today.

Ali Rahim: Of course. Thanks for having me. It's an honor.

Dr. Mike Patrick: Really appreciate it. So, we have been talking about transitioning for folks who are challenged with disabilities, so that transition time from the teenage years to adulthood and more independence. And home healthcare is really important for these folks during this time, right? Tell us a little bit more about why it's important.

0:25:17

Ali Rahim: Well, thanks again for having me and that's a great question. I think home healthcare agencies are playing multiple roles in people's lives, especially when it comes to receiving services at home and in the community, specifically about in terms of transitioning. 

If you look at the entire support network of transitioning adults outside of family and home healthcare service providers, I feel like the agencies are one of the pieces of the puzzle that spend the most time with individuals receiving services. So, this puts us in a very important position when we start consider what transition might look like. 

And to start, we have to have so much insight into the personality of the individuals. We know so much their likes and dislikes, tendencies, motivations. 

0:26:11

So, that puts us in a very unique position, which actually makes our role pretty critical I would say because with this knowledge, we need to be able to find a good way to communicate that to the rest of the care team. 

And that's a little tricky one, especially when you're using old methods of communication and collecting data. So, that's a different topic.

But in terms of the importance of our role, just the fact that we know so much about individual, so beside that information, we can also be a very safe place for them to try new things, new methods and basically, be able to fail in a safe environment.

0:27:00

Dr. Mike Patrick: When you think about these transitioning folks, the family and the parents really provided a lot of that support. And as they transition, there's still that piece of support that they need, but it can vary so much from one person to another and exactly whether that support is physical, emotional, mental health. 

There's all sorts of ways in which these folks who are challenged by disabilities need support. And I guess for you guys, no case is like any other, right? Each person and each situation is really unique in terms of what's needed.

Ali Rahim: Very much, very much. And not only it's unique, it's also ever changing, especially if they're coming from setting where like if they're even staying at home currently and either they might or might not have an existing service provider in place. But I feel like, sometimes even if you are doing a job right, that causes the changes to be occurring faster and faster, so being able to keep up with those changes and maintaining that momentum is pretty critical. 

0:28:14

But yeah, again, going back again to the role we can play, I feel just because of the trust we are building with individual, just based on the fact that we spend so much time with them, we can suggest different options for their future and get an honest response. 

Unlike the rest of the care team, we see the individual in all settings. We help them out in home, take them out to appointments and bring them into the community. So not only does this help us understand the individual as a whole person but we are always available to support them, as they advocate for themselves more and more and as they transition from one care provider. Meaning, not necessarily care provider but the different disciplines and practices like as you mentioned, the psychiatrist they work with, the behavioral therapist that they might be interacting with.

0:29:10

So, we can act as a voice of reason for them, too. Again, I'm repeating this but allowing them to fail in a safe environment, that allows them to explore their independence and grow as an individual in the way that they desire and they choose.

Dr. Mike Patrick: It is well worth repeating. I think that's a very important point that you're supporting, but you're also really providing venue for them to be self-determining as well and to make decisions for themselves. And to be a sounding board to some degree and helping them because you've seen other people in similar situations and you might think of ideas and resources that maybe they hadn't considered.

How has COVID impacted traditional home healthcare services? What's different now since the pandemic began?

0:30:06

Ali Rahim: I feel traditional, quote and quote, home healthcare agency have been put on, there's a lot of, based on like we mentioned in the first part of the question, so we do take important part in the lives of individuals. And one of those pivotal moments is the time they're getting ready to transition to the next step. So this always been an important role.

And with COVID, basically, I mean, this is just for our agency, I would say because Ohio At Home, the home health agency that I run primarily hires OSU students. The first few months of the COVID was extremely difficult because we lost a good portion of our workforce due to the college closure. And that was preventing our staff to be able to come back to campus.

0:31:06

Over time, we adjusted, for us and the staff, we just diversified the recording and digitized our training and hiring practices, and also started improving one of the newest service models which is remote support and remote monitoring services.

So, we have to do some adjusting. But one of the lasting effects of the COVID-19 will be, I would say expediting the unavailability of agencies going digital. Direct care is still needed, obviously, but now people are reconsidering the need for caregivers to be always physically present. And that's across the board, counties and healthcare agencies are becoming more aware of what a provider is actually providing, the services, and the goals, and outcomes. 

0:32:00

So, everyone is more cognizant. It used to be that if there's a need, just throw people at it and hopefully, there would be some good outcomes. But I feel now, counties especially are doing more due diligence in defining the goals and outcomes and then holding agencies accountable to make sure those goals are met.

But again, going back to digitalization, I feel this is long and time past due. And I guess the home health agencies have to transition too, because the old methods of communication, paperwork, paper documentation, and old methods of scheduling are not working, obviously. 

And I feel like COVID is pushing agencies to the point that they either have to adjust or they want to fail or they going to fail themselves or they're going to fail the individuals they're serving. So, that's going to be an inevitable result of COVID.

0:33:05

And I think it's a positive, I mean, I'd like to look at the silver lining. So, obviously these are hard times for everyone, but it's giving agencies more reason to look into new ways of service delivery, being able to conduct their businesses as a whole and just be more efficient with the limited resources they have, which are becoming more limited.

Dr. Mike Patrick: Yeah, absolutely. Tell us a little bit more about Ohio At Home and Medforall and how they are responding digitally. How is your model changing?

Ali Rahim: Ohio At Home and Medforall are sister companies. I founded Ohio at Home back when I was student at Ohio State studying Computer Science. So, I would describe Ohio At Home as a technology first company. We are dedicated to improving the lives of people with intellectual and developmental disabilities. 

And basically, our mission is to extend beyond fulfilling the basic needs of our client. So, pushing the in-home healthcare field into the future is inevitable part of our practice.

0:34:08

We use remote support services to safely empowering individuals and help them gain confidence and independence in their own homes, and hopefully, in the near future, also in the community. And again, our history of hiring OSU students has proven success. This kind of ties back into a first question of how we can help, specifically agencies can help individual's transition.

Just because of their age, I would say, just the fact that Ohio At Home hires younger caregivers, they're easy to relate to in a non-threatening way. And this friendship like relationship that they can have with their clients make them more relatable role model and that would encourage the transition of these individuals to independence. 

So, that's Ohio At Home. And I would say, Medforall, Medforall is just here riding along with Ohio At Home. 

0:35:09

Again, Medforall is primary focused on technology pieces that on one side helping agencies to be more efficient but building a line of business applications to help agencies utilize their limited resources better with helping them with scheduling, dispatching, communication, documentation, goal tracking, and so and so. And also, in the other side, we developed assistive technology for the individuals to be able to live more independently on their own. 
But then, the sweet spot, what's beautiful and this was not by planned is as we learned and started providing remote support services, we realized that the combination of these services, assistive technology and line of business application, is a natural way to provide remote support services. 

0:36:04

So, one of the areas that Medforall is focused on right now is working with the city of Ohio to understand part of the new methods of providing remote support services, as they're just monitoring for events or can it be more than that? Such as we can think of it as areas where agencies can be involved with, making sure their environment of care is safe and comfortable by adjusting the temperature, turning off the lights at a certain time, so individuals can rest, especially if they're living on their own. And hopefully in the near future, even remote object manipulation, using robotics and other devices that will assist people with physical disability.

Dr. Mike Patrick: It's a brave new world, right? 

[Laugh]

Dr. Mike Patrick: I mean, so many things are changing and there is a lot of possibility and it's really fantastic having people like yourself really on the frontlines of this and thinking creatively and coming up with solutions that will eventually just helps so many people.

0:37:09 

For those who are interested in learning more about Ohio At Home and Medforall, we will have links to your services in the show notes over at pediacast.org for this episode, 475, so people be able to find you very easily.

And with that, Ali Rahim, thank you so much for stopping by today.

Ali Rahim: Of course. Thanks for having me. Great talking to you.

[Music]

0:38:00 

Dr. Mike Patrick: Our next guests are Cara Lloyd and Marci Straughter with Dynamic Pathways in the Ohio Self Determination Association. Thank you both for stopping by.

Carol Lloyd: Thanks, Mike.

Marci Straughter: Thank you.

Dr. Mike Patrick: Really appreciate it. So, let's start out with just what is self-determination and why is it important? What do we mean by that phrase?

Marci Straughter: Self-determination, it means speaking up for yourself and speaking up for others and to show people that they have a voice. If they can't speak or have a communication device, see if they can have something plugged in to have their voices heard. Because it's really good to have your voices heard because right now, it's voting season and things like that and we need to have our voice heard to say who we love for president and what things that we need.

And also to learn your rights and responsibilities because there's not a lot of people that know that the rights that they have. Like I didn't know I can vote until I was 25 years old. 

0:39:04

And also, a lot of people doesn't know that they can go to college. And there's resources and there's places for people with disabilities to get education and get certification and degrees.

Cara Lloyd: I think sometimes just it's important to know, like Marci was saying that self-determination is really about your belief that you have control and that you have a say in your life. So people with disabilities, sometimes I think we get caught up on people being self-sufficient or independent. And you can still be a really good advocate for yourself and have a lot of self-determination and it has nothing to do with your ability to be self-sufficient or independent. 

It's really about feeling like you have a voice in your life, just like Marci was saying. And just taking pride in problem solving for yourself and being okay with being assertive in standing up and being creative about that stuff.

Dr. Mike Patrick: Really great points all round. Cara, from the family standpoint, when a parent has a child with a disability, how do they bring that up? How do you start to encourage that self-determination process?

0:40:13

Cara Lloyd: I'm a parent of young children. They don't have disabilities. But just thinking about what it feels like to be a parent that we put a lot of pressure on ourselves to make things perfect and wonderful for our children. And unfortunately, when families get a diagnosis, whether it's after birth or in utero of a child having a disability, I think there's a grieving process that happens. 

And so part of that grieving process is kind of feeling like you have to take care of this child and shield them from the world and make sure everything's okay, because that's just who we are as parents, is that we try to protect our children. But really, the best thing that parents can do when they have a child with disability is treat that child like you would treat like any other child and start self-advocacy and self-determination from the very beginning. 

Because what that's going to do, and I want Marci talk about her mom too, but what's that going to do for these kids is that not only you're going to pave the way for them to speak up for themselves and have self-determination, but also they're not going to expect anything less from the community.

0:41:09

So, when they're treated as equals from birth, when they go out to the community and they're facing the world as a person with disability, they're going to accept nothing less than to have the community respect them the same way that they were shown as the parent. 

And Marci's mom was a really strong lady. Marci, talk about your mom and her teaching you self-determination.

Marci Straughter: Okay, myself, how I first learned how to was my mother. When I came out of her stomach, she was there for me all through my 14th brain surgeries. And she was there teaching me in elementary school and junior high and high school. When I was in elementary school, the things that I didn't understand, she would get like Cat in the Hat books and make sure that I was learning also at home to learn in school too, because sometimes, they would go fast for me to understand. 

0:42:03

So, to have that support when you got home to get to your goals and what you want to do, I wouldn't be here without my mom if she would not taught me those educational steps by reading Cat in the Hat and helping me with to getting my diploma, helping me practice and make sure that was on point. She even helped me when I graduated college at Columbia State, too.

Dr. Mike Patrick: That is really fantastic. Marci, do you have a sense of what age should that self-determination process start? Or does it matter what age?

Marci Straughter: I think it should start when you're in the eighth grade and then, from there, going into high school because going into high school, that's when you come to get in to your adulthood. So, if you learned that from high school, it would be good. I learned also from high school because I have job programs and things like that to help me in my career based on learning how to do a job. 

0:43:10

So, high school and junior, eighth grade and junior high. And then, once you go there, you can go to college if you want. You can get a job if you want, but I think those are important ages to do that.

Dr. Mike Patrick: That really make sense. Cara, what's the best way for us to support families who may be having a difficult time with self-determination? Maybe we're a family that is not impacted by disability, but we have friends and love ones and neighbors in the community who are. Can we play a role in helping them realize self-determination?

Cara Lloyd: Yeah, I think, just like I was talking before about creating this expectation around the child and if they're going to make decisions for themselves and they're going to live the life that they want to live. If you have friends and family of people that have children with disabilities, just supporting them in that mission. 

0:44:07

Marci was talking about that middle school, high school age being pretty important, and I think that's true. There's a training that OSDA provides in the state of Ohio called Project STIR. And we got that training from, we actually borrowed it from the University of North Carolina.

And we can talk about that too, but there are several programs and lots of advocacy groups around that you can join and be a part of. And Project STIR is a training actually put on by people with disabilities for other people with disabilities, so being able to see as a young person with disability like these mentors.

And we got plenty, like Marci, Marci gets up and speaks about going to college. She speaks for herself. She doesn't need someone to advocate for her very often. And so, having that role model, I would say getting involved in that kind of stuff is a great way to learn and then also to teach the next generation behind you, just keep the message going.

0:45:05

Dr. Mike Patrick: Yeah, absolutely.

Marci Straughter: Yeah, I think that Project STIR is really, really an important part because, like I said, it teaches you that you can, you have your right to go to the state house. Or that we have Advocacy Day at the state house in April and we get to talk to our legislators and we get guest speakers. 

As a matter of fact, last April, I was one of the speakers, but I got to go talk to my representative and tell him what's on my mind and what I'll change for the disability community. 

And just like last, I think that's last year, I went to Washington D.C. with a couple of my DD counsel friends because I'm on Ohio DD counsel and we went to Washington. And we went on to Capitol Hill, in different places, and talk to our legislators. I got to talk to Sherrod Brown and tell him what I would like to happen in Ohio. So, to have all those resources there is really, really important.

0:46:18

Dr. Mike Patrick: What's the role of the Ohio Self Determination Association? I think this is an organization. This is the first that I've heard of this. And so, what do you do and how do you help?

Cara Lloyd: So, the Ohio Self Determination Association, you hear us called it OSDA, is a non-profit organization that just kind of creates change and empowers people with disabilities and their families to direct their own services and direct their lives. 

There's a 19-member board that is made up of equal parts people with and without disabilities. There are parents on the board, family members, providers, people from local government and it's all volunteers. So, there's no paid board members. OSDA doesn't have any employees.

0:47:00

But the mission is just to expand awareness of self-determination. So, we provide training like Project STIR. And we actually get a grant every year, every year when we apply from the Ohio DD council. So, that's money coming out of Ohio to actually improve advocacy in the state. 

That's my role, is that I'm not a board member and I don't often speak on behalf of OSDA but I am happy to do so today. But my job is just to manage that grant. 

I orchestrate projects throughout the state. Now, this year because it's COVID, we haven't been able to do as many. 

But it's a three-day intensive training, happens at a hotel. People with disabilities come with one ally. We on purpose set that person, the future high leader in front, the allies behind just to assist if needed. And it's really an incredible event. It's life-changing for a lot of people.

So, OSDA just promotes that. They work with policy makers to try to make change in the state of Ohio on behalf of people with disabilities

Dr. Mike Patrick: I bet that that's been a little bit more challenging in the era of COVID. Have you been able to incorporate virtual connections and this kind of support?

0:48:07

Cara Lloyd: You know what, Mike? This is what's so awesome about working with these Ohio leaders, is that people with disabilities are used to overcoming challenges. That's like an everyday, I shouldn't say every day. That's a pretty regular thing. 

So, we were on Zoom really quick. I mean, I think we have regional meetings and there was a regional meeting just a few weeks ago that had over 250 people on it. So that was people with disabilities and also support folks, too. 

But we, I mean, gosh, Marci, how many Zoom calls a week are you on? I mean, we're still connected. And actually...

Marci Straughter: I'm on Zoom calls almost every day. And I'm on GoToMeetings every other day. And I'm on a lot of board, on a lot and lot of boards and we have our meetings and we have to do it through Zoom. So, I'm on Zoom calls almost every day.

0:49:01

Cara Lloyd: Honestly, it makes it easier for some people because there's a lot of transportation issues for people with disabilities. And that's one thing when Marci was talking about Legislative Day, that was the voice we heard a lot with people of disabilities,  is "I have to get where I need to go." 

And so, in Columbus, we're really lucky. We have a COTA. We have a lot of programs that can get people where they need to go, but that's not that way in a lot of places in Ohio. 

So, Zoom has actually made it a little easier because most people have a smartphone. So, some people that maybe couldn't make all the meetings that they wanted to are able to connect through virtually.

So, we really as I was there thinking about what's the future is going to like and when we have  those in-person meetings, are we also going to bring future people in virtually? Because we just opened ourselves up to even more people to include.

Dr. Mike Patrick: Yeah, absolutely. And I'm going to include a link to the Ohio Self Determination Association in the show notes for this episode over at pediacast.org. And then, the other organization that I had mentioned there in the beginning Dynamic Pathways. Tell us about that.

0:50:02

Cara Lloyd: Dynamic Pathway is actually who OSDA has a contract with for the project that I do. Dynamic Pathways is a consulting company that support the DD system in the state of Ohio. 

So, this is just a little part of my job. Another part of my job is I have a contract providing behavior support all across the state. So, we have contracts with different county boards, the DD, and we help with behavior support. 

We also help manage some human rights committees around the state. So, Marci talked a lot about the rights of people with disabilities and making sure that they understand those. 
And so, there are sometimes that because of behavioral needs that we end up infringing on people's rights. If you think about someone that might need help with getting out of unsafe situation, we're maybe restraining someone, we tried so hard to never have to do that.

But there's a human rights committee in every county that does not allow. They're there to uphold people's right. And we have to have lots and lots of justification to meet a rule in order to do something that is against someone's right. So, it's just another governing body making sure that we're upholding people's rights.

0:51:11

Dynamic Pathways also does training classes around the state for providers and for county boards of DD. I actually just did one on autism with the West Ohio Fire Department, which was pretty interesting. So, they were happy to hear about autism. 

And then, we offer some nursing classes as well. We have direct support professionals that work with people with DD. And they have to have a special certification in order to give medications because that's such a scary important thing, that people receive the right medications correctly. So, we have nurses here that do those training classes, so that it can directly support professionals, that's DDI.

Dr. Mike Patrick: Well, we really appreciate all that you do and all the support that you provide to folks and families. So, once again, with Dynamic Pathways and the Ohio Self Determination Association, Carol Lloyd and Marci Straughter, thanks again so much for stopping by today.

Cara Lloyd: Thank you.

Marci Straughter: Thank you.

0:52:08

Dr. Mike Patrick: Our final guest this week is Logan Philipps. He's an attorney with Resch, Root, Philipps & Graham Law Firm in Central Ohio. And first, welcome to the program, Logan. Really appreciate you being here.

Logan Philipps: Thank you, Dr. Mike. I appreciate it.

Dr. Mike Patrick: I have to say in 15 years of podcasting, I think you are the very first attorney that we've have on PediaCast. So, that's something special.

Logan Philipps: Well, when you can avoid lawyers, you're probably doing something right, so.

[Laughter]

Dr. Mike Patrick: Yes, in general, that's true. Although, you also help people. And so that's what we're going to talk about today is the services that attorneys can perform for families challenged by disabilities. What are some of the ways in which you can help?

Logan Philipps: Yeah, thanks for asking. I'm happy to, hopefully, the listeners here will find something that they can use. I like to tell people that I'm the lawyer that people like. I don't fight with anybody. It's really great. It's nice to be able to do that kind of lawyering. 

0:53:03

So, what I do is I work with families with their loved one with the disability and usually that's a child. And I help those families make sure that when the parents are gone, their child will be cared for and will have the assets that the parents have accumulated over their lifetime and also government benefits, like Medicaid and social security,  to be able to provide for that child.

Dr. Mike Patrick: And I can imagine that these are important services for these families. But I also suspect a lot of folks don't know that these kind of services are available. 

Logan Philipps: We see a lot of people at all ranges sort of the spectrum of knowledge when it comes to the importance of planning for special needs. Some families come in and they say we know that we can't leave money to our child with special needs the way we're going to leave it to our typical child. And then other families will come in and say, "Hey, I was at something. They say I needed the trust. What does that mean?" 

And then other families come in and they're actually coming in for something maybe different, like a guardianship. And I then inform them, "Hey, this guardianship is an important step but what happens after you're gone?" 

0:54:10

We need to make sure that the Buckeye tickets are still being purchased, that those can still get purchased after you're gone. That the camps can still get paid for after you're gone. Because most of the time, mom and dad are paying that out of pocket and when they're gone, they need to arrange for those to continue to be paid for when they're gone.

Dr. Mike Patrick: Yeah, absolutely. You talked about making sure that state benefits are being met. I imagine if you're a family traveling through this and especially if you're new to it, maybe you have a child who just recently has become disabled, how do you go about finding out what services and benefits that are even out there for you?

Logan Philipps: I tell people, when they're in my office and they haven't been in contact with their County Board of Developmental Disabilities, I say, "What I'm going to do for you is important but it should be on hold until you contact them." 

0:55:03

I tell them, I give them the phone number and I say, "When you are leaving here, leaving the parking lot, call this number and begin that process." Because the County Board of Developmental Disability is really the gatekeepers for all of these services.

And those services are tremendous, lots of support is there to help families with a child with disabilities.

Dr. Mike Patrick: And then when they encounter complexities or barriers or roadblocks or just aren't really sure how to get around a specific thing, that's when having someone with some legal knowledge can be beneficial, right?

Logan Philipps: Sure. I'll give you an example of a family that comes in to see me. A husband and wife who have three children and one of those children happens to have a disability. And they're doing all of the things that parents do for kids, they're paying for camps, paying for soccer. They're saving for their retirement. They have life insurance and when they die, they want those assets to be able to enrich the lives of their children. 

0:56:04

Well, what if the child with the disability is also relying on for Medicaid, a Medicaid waiver that providers support for that individual to go to work, transportation to go to a day services facility? What if that person has a waiver and that person is living independently with 24-hour support so that they can live independent? 

Well, if parents just leave the money outright to that child, we've got a problem. So, I work with families to make sure that that money doesn't cause a problem. It only enriches their lots.

Dr. Mike Patrick: Absolutely. One of the themes of our podcast today has been helping those with disabilities transition from being dependent to being more independent and kind of crossing that bridge from the teenage years into adulthood. When is the good time for families to seek legal counsel as we think about transitioning?

0:57:02

Logan Philipps: So, the other part of my job is helping families to do exactly that. So, I spend time, I like to say that I am a lawyer who works with families with children or loved ones with special needs. So, part of that is planning for the future and that involves trust and making sure that assets are set up right so that they enhance lives.

The other portion of that is helping people transition to adulthood. So I answer a lot of questions about guardianship and alternatives to guardianship. So, at about the 17-year birthday, parents start to hear from providers, maybe the county board, maybe a doctor, maybe the school, "Hey, what's going to happen after they're 18 and they're an adult? Are you going to get guardianship? Are you going to become an assistant decision maker to help him continue to make these decisions?" 

So, the guardianship is a court-driven process where a person becomes a guardian of another person. Basically, it's a continuation of that parent-child relationship. 

0:58:07

And a power of attorney is different than that, it's one adult, the person with disabilities, allowing another adult to support them and help them make decisions, or in fact, take action for them if they can't do it themselves.

One of the best parts of my job I think is helping families decide whether a guardianship is the right strategy to help their adult child transition. I believe in least restrictive for everything and a guardianship is very restrictive. And Ohio law, and I believe in following that, says that we should go from least restrictive to most restrictive. 

So, lots of times families come in my office and say, "We need a guardianship" and after discussion, we find out that they can support their individual with disabilities without having a guardianship and really allow that individual to make decisions on their own, but be in the background to support them in case something goes wrong.

0:59:10

Dr. Mike Patrick: I suspect that there's a lot of these conversations that families don't always think about the complexities and the in and outs of, as you mentioned, Ohio law. And so just making that appointment to talk with an attorney about what the options are. And you probably bring up often considerations that the family hadn't really even thought of.

Logan Philipps: Oftentimes, having done this a lot and talking with families, I get to kind of uncover for families what we need to think about. I'll tell you that two resources that are out there that cover both of what we talked about, both areas are two books that my law partner and I were asked to write for the Disability Counsel of Ohio. 

They're available through the county boards and the one about trust and stable accounts and those things is called Planning for Bright Tomorrows. And the other about guardianship and alternatives to guardianships is called Guardianship in Ohio. 

1:00:08

And even that book Guardianship in Ohio starts off with the alternatives to guardianship that are at least restrictive and then we talk about guardianship. So, always focusing on the least restrictive.

Dr. Mike Patrick: Great. And we'll put those resources in the show notes for this episode, 475, over at pediacast.org so that families can find it easily.

Another theme of today's podcast has been how COVID has impacted all of this. How has your legal firm kind of pivoted in order to continue to provide services and counsel and help families in this era of isolation and distancing from one another?

Logan Philipps: Luckily, it hasn't impacted, at least from my end. And I haven't heard any kind of complaints from families. We are as busy as we've ever been and that's because we were quick to transition to Zoom and other platforms, so that we could talk with families and plan for them. 

We did have a period of time where we were having signings outside under a tent. We called it the World's Lamest Tailgate. During that time in March, in April, when we really didn't know how this COVID spread and it was sort of wipe everything down, don't come inside buildings, we were actually having virtual signings over Zoom. And then people were driving up and then they were signing their documents in the parking lot. 

That was kind of strange and I'll never forget that. That's for sure.

Dr. Mike Patrick: Yeah, absolutely. It's a different world and I think that a lot of these changes are going to be permanent moving forward to some degree.

So, we are here in Central Ohio. And, of course, you are here and provide services to folks in the state. We have an audience that really spans the entire country, how can families find attorneys like you who specialize in this type of work who maybe aren't here in Central Ohio?

1:02:06

Logan Philipps: In Ohio, I know that we are a firm who does that, another firm who does this kind of work in up north is the law firm of Hickman & Lowder. And we worked with those attorneys before with clients. 

But from a national perspective, two places where folks can go to find lawyers who hold themselves out as attorneys who do this kind of work, they won't call it a specialty probably, they're just calling an area of focus like I do. And one of those is, if you go to Special Needs Answers, okay? 

Specialneedsanswers.com is a list and I'm on the website right now and it says you can put in your city or ZIP code and you can find a special needs planner. That also has not only lawyers but also have other kinds of people planners, other professionals who work in that arena. 

And then the other national organization is called Special Needs Alliance. Special Needs Alliance is specifically for attorneys. And they have find an attorney box right there that you can use.

1:03:21

Dr. Mike Patrick: Yeah, perfect. And we'll put links to those resources in the show notes as well, so folks can find everything all in one convenient place. 

And then, tell us how families can get connected with your particular law firm.

Logan Philipps: Sure, great. Thanks. The way they get in touch with me is to schedule an appointment. We can do that via Zoom or live and they do that by calling 614-760-1801. That's 760-1801 and they'll talk with Peggy who will schedule an appointment.

It cost nothing to come in and talk with me. If you have questions or you just want to set up a phone call to talk about things, let's do it. The way I look at it is everybody is going to do planning at some point, so I'm happy to help. And we can figure out whether now is the right time or if it's going to happen later on in life.

1:04:11

Dr. Mike Patrick: Yeah, great. And not just phone calls, you do Zoom meetings too, right?

Logan Philipps: Absolutely. So, when you call Peggy, they'll be scheduling a Zoom meeting or an in-person meeting, whatever the client would like to do.

Dr. Mike Patrick: Absolutely. I find that I'm preferring Zoom and FaceTime now to regular phone calls. Did you start to get used to it? It's nice to see someone's face?

Logan Philipps: Certainly. I like the Zoom because you can read emotions. You can figure out, you can look at them and see are they really getting it. What I like about Zoom meetings too is so much of what I do as a former teacher is I find that I'm teaching clients about the trust. 

And so, we have a white board that we can share on the screen. So I can actually draw and then it appears on the client screen. So, they see that a trust looks like a treasure chest and the trustees have the keys, and the beneficiary is the child, and here's how things get in, here's how things get out. 

And it's all drawn for them, so they really come out with an understanding of why they're doing the things that they're doing, not just that they have to do the things that they do.

1:05:17

Dr. Mike Patrick: Really fantastic. I absolutely love that. Logan Philipps, again with the law firm Resch, Root, Philipps & Graham. Thank you so much for stopping by today.

Logan Philipps: Thank you for having me.

[Music]

Dr. Mike Patrick: We are back with just enough time to say thanks once again to all of you for taking time out of your day and making PediaCast a part of it. Really do appreciate that.

1:06:06

Also, thanks to our guests this week, Dr. Pankhuree Vandana, Ali Rahim, Cara Lloyd, Marci Straughter, and Logan Philipps. Really appreciate all of them sharing their expertise and their services with all of us.

Don't forget, you can find PediaCast in all sorts of places, really, wherever podcasts are found. We are in the Apple and Google podcast apps, iHeart Radio, Spotify, SoundCloud, Amazon Music, and most other podcast apps for iOS and Android. 

Our landing site is pediacast.org. You'll find our entire archive of past programs there, along with the show notes for each the episodes, our Terms of Use Agreement, and the handy Contact page if you would like to suggest a future topic for the program.

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And we love connecting with you on social media. You will find us on Facebook, Twitter, LinkedIn, and Instagram. Simply Search for PediaCast.

1:07:00

Also, I want to remind you about PediaCast CME. That stands for Continuing Medical Education. It's our sibling podcast. It's similar to this program. We turn up the science a couple notches and offer free Continuing Medical Education Credit for those who listen. 

And that, by the way, includes not only doctors, but also nurse practitioners, physician assistants, nurses, pharmacists, psychologists, social workers, even dentists. And since Nationwide Children's is jointly accredited by many professional organizations, it's likely we offer the exact credits you need to fulfill your state's Continuing Education requirements. 

Shows and details are available at the landing site for that program, pediacastcme.org. You can also listen wherever podcasts are found simply by searching for PediaCast CME. 

Thanks again for stopping by, and until next time, this is Dr. Mike saying stay safe, stay healthy and stay involved with your kids. So, long, everybody.

[Music]

1:08:13

Announcer 2: This program is a production of Nationwide Children's. Thanks for listening. We'll see you next time on PediaCast.
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