Watch our inaugural podcast, where Heather and Jessica talk about what a developmental disability is, and why it matters. Find the full transcript below!
Jessica (00:06)
Welcome to our inaugural podcast. I am Jessica Tomko and this is
Heather (00:12)
Hi, I’m Heather Tomko.
Jessica (00:15)
And we are here today on behalf of Beyond Definition, the new project that is a joint project between Project Beyond Diagnosis and the Pennsylvania Health Law Project.
Heather (00:31)
We are so excited to be here today. We are new at this, so please bear with us as we learn the ins and outs of podcasting. But we’re really excited to be talking about this with you all. So before we dig in too much, we will introduce ourselves and share a little bit about why we’re here.
Jessica (00:55)
Absolutely. I am Jessica Tomko. Heather Tomko, in case you’re wondering, is my sister. That’s the commonality with our last names. I am 35 years old. I have a disability called spinal muscular atrophy. I’ve had it since birth. So I have been a disability advocate pretty much since as far back as I can remember. I work at Carnegie Mellon University doing grad admissions and I also do, as I mentioned, some disability advocacy work on the side.
Heather (01:31)
So I am Heather. I am a year and a half older than Jess. And as any older sisters will know, that half year is obviously very important.
Jessica (01:44)
the younger sisters will be well aware of that as well.
Heather (01:47)
I am a lifelong Pittsburgher. Jess and I have the same disability, so also a lifelong advocate out of sheer necessity. And I am a content creator. I share about my life as a disabled woman online.
Jessica (02:12)
So that’s also a bit about us, which we think is important to share because it directly informs why we are involved with this project. Disability advocacy has always been very important to us. As Heather mentioned, sheer necessity. If something isn’t working for you, you have to help to make things work and hopefully it helps others in the process. So that’s why we’re involved, passionate about helping to improve the system and helping to improve the lives of not only us, but other Pennsylvanians who are dealing with similar issues. So we were asked to be involved with this project for those reasons due to our close ties to obviously disability justice as well as our work more so Heather, with content creation and being involved in that sphere.
So Heather, do you want to share a little bit about this project beyond definition?
Heather (03:21)
Absolutely. I think that a great way to kind of level set why we’re all here is to talk about the goals of this project. We have three main goals. And the first is to educate people about developmental disabilities, which more on that in just a minute or two. The second is to ensure that all disabled Pennsylvanians have equitable access to programs and supports in the state. And then the third is to empower disabled Pennsylvanians to create that meaningful change for themselves and for the whole disability community. So with that, can dive right into that first goal and maybe even share a little bit about what a developmental disability is.
Jessica (04:23)
Yeah, I can share first of all that I have a developmental disability. Heather has a developmental disability, which to be honest was something I didn’t even realize because this terminology is often misused and misunderstood. So it’s really important to educate ourselves and others on what this terminology is and what it means. So everybody’s using common language because if we’re not speaking about the same things in the same way, there’s no way we’re going to actually achieve equity or justice in any meaningful way. So I am going to reference notes here. It’s a little bit of a lengthy definition, but a developmental disability. It’s an umbrella term, so it covers many, many, disabilities, and it references a severe chronic disability that - and then here’s where the bullet points come in.
It’s caused by a mental or physical impairment or a combination of the two. It occurs before the age of 22 and it is likely to continue indefinitely. And then it also results in limitations of at least three of the following things. So either self-care, receptive or expressive language, learning, mobility, self-direction, capacity for independent living or economic self-sufficiency. And then finally, it requires a combination of lifelong individualized specialized services or supports. And this definition is straight from the Developmental Disabilities Assistance and Bill of Rights Act of 2000. So that’s when it was formally, formally defined according to the law, and that is the actual definition.
So as I mentioned, it’s an umbrella term, which means there are many, different disabilities that fall under this category. But some of them, just so you get an idea, are ADHD, forms of muscular dystrophy, which Heather and I have a form of, SMA, autism spectrum disorder, intellectual disability, which will be coming up a lot in our future conversations. So keep that one in mind. Cerebral palsy, Down syndrome, blind and low vision, deaf and hard of hearing, as well as many, many, more. So Heather, if you want to help connect the dots and explain a little bit of why this matters and why we’re talking about this.
Heather (07:03)
Yes, so in most states, diagnosis determines the different kinds of services and programs offered by the government that you are eligible for. Unlike other states, here in Pennsylvania, we don’t use that definition of developmental disability that you just told us about to determine eligibility. So Pennsylvanians with a developmental disability that is not intellectual disability or autism fall under a different category and are eligible for different services and programs. Why is that a problem? Well, the services and programs offered between those two different departments aren’t equal, the same things aren’t offered. And so it leads to pretty huge disparities between those with and without intellectual disability and autism. But all of these people still have a developmental disability. And I know this is something that you and I can and will talk about in detail in our future podcast because those services that aren’t offered end up impacting pretty much every aspect of our lives and lead to a lot of challenges in living as full and independent of a life as we’d like to.
Jessica (09:02)
Spoiler alert, Heather and I are in the system that does not provide as robust of services, which is a big reason why we are very eager to discuss this because it does directly affect us. Full transparency, any changes, any improvements will directly impact our lives as well as lives like us. And so it’s really important for us to you know, to try to make some sort of headway, at least to get people to understand that there are two different systems and that they are not equal, that there are big differences between them. For no other reason than, you know, maybe time’s changing, misunderstandings of different definitions, misunderstandings of needs and of disability in general, because the services that are offered are not based on the needs of the people with the disabilities. They are based on the diagnosis, which in theory kind of sounds like it makes sense, except it’s not the... when you don’t use the correct or the common definition of the disability, it creates severe disparities.
I think we can go a little bit into what those two systems are, just so everybody kind of knows what we’re talking about in the future as we delve into this. I’ll start off. The two systems is ODP, which is the Office of Developmental Programs. And as we mentioned earlier, these waivers require a diagnosis of intellectual disability or autism.
And then there’s Office of Long-Term Living, which is what Heather and I fall under. And these waivers require a diagnosis of developmental disability except for intellectual disability or autism or other physical disability that is deemed severe enough to have these needs.
Heather (11:23)
And when Jess says waivers, to put a definition on that, I think it’s hard because so much of this work involves terms that a lot of people don’t know and that are really important when you’re talking about these kinds of programs. So waivers are Medicaid-funded programs, but they allow disabled people to live in the community instead of in an assisted living facility. So they’re all waivers because they waive the rules and apply the funds from Medicaid towards home and community-based care. So they’re what allows Medicaid to pay for caregivers. So people like me and Jess to live in our homes instead of in an assisted living facility.
Jessica (12:30)
And it’s important to note that they cover a wide range of services. And between the different systems, they cover different things, as we briefly mentioned. But they do cover more than just the typical Medicaid kind of insurance. They cover the caregiving, as Heather mentioned. And then based on the waiver that you’re in, they cover additional things like home modifications or transportation, nursing, things like that.
These services are very, very important to us in order to live as independent and as full of a life as we can. Without some of these services, we would be out of luck. And so it’s really important to us that we try to make sure that everybody gets the services that they need and that it’s not based on some kind of arbitrary definition, some arbitrary line that was determined many, many, many years ago that now that we have a better understanding of disability, that it’s time to take a closer look at this and amend things when necessary. So that’s kind of the goal of this project overall. We want to make sure everybody understands the different systems, the differences between them, and the consequences of being in one versus another. So we will be delving into various topics of certain things that are covered or not covered or addressed or not addressed in the different delivery systems. By delivery systems, I mean ODP versus OLTL. We’ll be going into that more over the next few months, and we hope to educate ourselves and others. I know that I have learned a lot even over the past few months of kind of digging into this a little bit more. It’s eye-opening to see... Quite frankly, what other people with disabilities are getting that I’m not based on just the diagnosis that they have and not based on their needs or their goals in life. So yeah, it’s definitely been a learning experience so far. We’re excited to learn more and help share what we learn with others so other people understand as well.
Heather (14:55)
Thanks for tuning in. We’re excited to dive in a little bit deeper in the future, but hopefully this has set a good stage for understanding developmental disability and what it means and why it matters for us.
Jessica (15:16)
Yeah, so hopefully you can tune in next time and we’ll be able to share some more and we’ll be sharing out stories of other people and how they’re impacted as well. So we look forward to sharing more with you soon.
