In this week’s episode of Mom Autism Money, Dena Gassner is back to teach us the ins and outs of Vocational Rehabilitation.
Your state’s office of vocational rehabilitation can provide funding for job training, college, and even entrepreneurship.
Dena has used her VR office to secure nearly $20k in startup funding for her own business, and used it to facilitate her son’s college education.
This programming can be immensely helpful, but you’re going to want to come in with a concrete plan. Otherwise, you or your child could end up being funneled to a job that pays less than minimum wage.
We also talk about:
-Federal student loan discharge based on disability.
-Why you should not shy away from expensive college options even if you’re not loaded.
-Why you probably shouldn’t take out Parent PLUS loans as the parent of a disabled child.
-How Dena and her son approached the college selection process.
Listen
Show Notes
Check out Dena’s Center for Understanding FB page.
Find your state’s vocational rehabilitation office.
Find your state’s office of protection & advocacy if you’re having trouble with your VR office.
Learn more about federal student loan disability discharge.
Learn more about the special minimum wage certificate.
Check out Project Search.
Check out Think College.
Find your local chapter of The ARC.
Find your local chapter of The Autism Society.
Contact Dr. Connie Anderson to check audit availability for Dena’s class at Towson.
Full Episode Transcript
Brynne: Welcome to Mom Autism Money. We are so happy you’re here with us today. This week, we’re going to be talking about vocational rehabilitation, which is a program that provides disabled people with funding and resources for their career. Whether that be college funding, providing supports for higher ed, job training, or even startup funding for your entrepreneurial venture.
Like almost everything else that we talk about, how things work and which populations are actually served is going to vary a lot depending on your state. To talk to us about all of this today and kind of break it down, we’re sitting down with Dena Gassner. If you think that’s a familiar name that’s because we talked to Dena last week about applying for SSI and SSDI. She has a really great system for going about it. It’s a really hard, complicated process, but she actually used some of that SSI money to pay for her son’s room and board while he was at college. So if you’re listening today cause you’re interested in the college aspect, I would definitely recommend going back to listen to that one, as well.
She came back this week to educate us on voc rehab. She has a ton of tips and walks us through how she’s used this program to get literally $20,000 in startup funding for her own business. And she also used these programs and services to help with her son’s college education. We’re also going to touch on some other really cool topics, like the fact that federal student loans can be discharged if you’re disabled, why you should not shy away from expensive college options, even if you’re not loaded, and why you should probably not take out parent plus loans as the parent of a disabled child. We’re also going to talk a little bit about how Dena and her son approached the college selection process.
So there is going to be a lot of college talk today. I don’t want anyone to run away though and say, that’s not the stage of development we’re at! Because again, we have tips for adults as well. If your son or daughter is an adult, if you yourself are a disabled adult, you have access to all of these programs, too.
Another big reason you’re going to want to listen today even if you have a younger kid, is because a lot of the stuff that we’re going to talk about is stuff that you want to start thinking about, and even acting upon his early as middle school. Without further ado, let’s talk to Dena.
(whooshing sound)
Brynne: Thank you so much for joining us today, Dena. And before we get started, I’m wondering if you could tell us a little bit about yourself and also your experience with some of these services that we’re going to be talking about today.
Dena: I am a 63 year old PhD candidate writing a dissertation, uh, frankly, on social security access. So that’s kind of funny. What I find is that with a lot of these systems, it isn’t the person’s limitations or challenges that is inhibiting them accessing them, but something the literature calls “administrative burden,” which is just intentional red tape.
And it’s sort of like there’s a hidden curriculum to this that nobody tells anyone about. So when I’m working with families on accessing social security or voc rehab, when I tell them about the hidden curriculum, I find that they get really anxious and very overwhelmed and frustrated.
And I try to get them beyond that to: It is what it is, and let’s just work within the system’s framework. So that’s the approach I take. I’m on the national board of directors for the Arc US. I think I’m in my last year of my tenure with them. And I’m heavily involved in autism research, uh, nationally and internationally, as well as doing a lot of policy work for the Interagency Autism Coordinating Committee or the IACC.
Um, this is my first year in that appointment. And what we do is advise the white house on where funding for research monies through the NIH and the CDC should go. So I wear a lot of hats. Um, but all of this started because I had a kiddo that was diagnosed with autism at three. They misdiagnosed him with intellectual disability.
So I tell people my career’s been developmental. So as he would pass through different thresholds for services and supports, I’d develop a new area of expertise. So now he’s in his thirties and my expertise area focuses primarily on adult needs. I was very surprised, but not necessarily disappointed to get my own autism diagnosis at 40.
And so my son and I experienced very different journeys. He was, he never knew a day where autism wasn’t part of his language. Where understanding himself through the lens of this language wasn’t available to him. He never knew a day we’re getting supports was unacceptable. He never had a day where injustice that he faced was ever internalized as his doing.
Obviously at 40, I had a very, very different experience. So my focus right now is primarily on individuals like myself, for whom there was no diagnostic label for what we experienced. Or worst case scenario the labels we were assigned came with ensuing medical maltreatment and malservice because it was incorrect or partial.
Right? So for example, many autistic women who were not identified because the, you know, the nuances of autism were not understood, experienced misdiagnoses or partial diagnoses of like mental health issues. You know what autistic doesn’t experience anxiety, for example? If all you get is a diagnosis of an anxiety disorder, the underlying developmental issues will never be addressed.
I’m in that kind of cohort of individuals who are, you know, having to unpack social conditioning about how we experience the world and trying to reintegrate our identities to incorporate our Autism.
That’s me in a nutshell. In terms of systems, my son and I have endured multiple systems in multiple states.
He was massively underserved in our state of origin. And when my daughter left for college, my son and I relocated first to North Carolina, and then to Nashville near Nashville, Tennessee, to try to get him in a school system that understood that his problem was less about autism and more about global processing differences, learning disabilities in every academic domain.
But once we provided the intensity of support that he genuinely needed, we were able to clearly see that he was very capable and he went on to graduate from Marshall University, graduated from high school with an honors diploma, but it required intensive, intensive supports for him to achieve those goals.
Interestingly enough, you know, he’s, he’s doing very well, but we navigated Voc Rehab out of Tennessee, voc rehab out of West Virginia. And now we’re back negotiating VR through Kentucky. And the systems are going through a massive, uh, struggle with, with COVID. We’re really struggling to maintain services for these agencies and to get adequate support across the board for people with IDD.
Brynne: Moving into the vocational rehabilitation, I’m wondering if somebody is on SSI, they do have that goal, that is something that they want to do. They want to go out and have a job or a career. What are some of those strategies that can help them transition towards that route, bearing in mind that however you might want to do it, this system is built in certain ways. And again, just trying to maximize your odds for success within that system.
Dena: Sure. So VR is a protocol that has some, some hidden curriculum. If you’re being very black and white about it, their job is not to send you to college. Their job is to provide essential training and assistive technology and employment support for the purposes of getting a job. Right. So if you go to the voc rehab and you say, I don’t know what I want to be when I grow up, then they’re going to try to sell you the least expensive mechanism for employment.
So if you say, oh, I’m vacillating between being a massage therapist and an occupational therapist, they’re going to lean you toward the first, massage therapy because it’s a six month training program and not very expensive for them.
Whereas OT requires four to six years of college. And for our population, they often don’t take a full course. So for example, my four year PhD program is now in year eight and a half, right? Because we process through these systems sometimes more slowly, we run into barriers. And so they’re always going to try to encourage you to take the least expensive, quickest outcomes.
So you have to know that going in, you can’t go in and say, I want to go work in a museum because you don’t have to have a degree to work in a museum. You have to go in with a specific job title. So for example, my son chose that he wanted to be a museum technician, and this is the guy in the basement of the Smithsonian that does the intake on the dinosaur bones, right?
Like it’s a very specific job and it does require a four-year degree. So by using that particular job title, we were then able to get them to pay for college. Now I’ll tell you the secret. We didn’t think he would graduate from college. We wanted to buy a couple of years for him to develop a little bit more.
Socially, emotionally, cognitively at his own pace. So we sort of sent him away to college to develop some independent living skills with some support through the college autism program there at Marshall University. And you know, if he got a bachelor’s degree or a two-year degree, well, that would be gravy.
Well, you know, the little snob did it. Now, he only took nine hours of credits per semester. He had a 20 hour a week one-on-one academic coach. He had the external support of the college autism program, which made it so that he got travel trained on how to use the bus and made sure that he went to the supermarket, even in a blizzard because he only drinks chocolate milk, you know, and so on.
So it was a very extensive wrap around protocol in order to get him to achieve that goal. But we were able to get first, the state of Tennessee and then the state of West Virginia to pay for that because we knew how to utilize that system. Now, some people who may not have benefited say from the exit testing to identify a career path may present to VR saying, I’m not really sure what I want to be when I grow up, they may ask for further assessment to help them choose a career path. They can have trial work periods with a job coach where they go try out various jobs. I mean, there’s some very valuable assets to that, but if you’re looking at a post-secondary goal, you want to go to college, then you really do need to identify that job that you want to do.
What they also don’t tell you is you can change your mind. And again, for many autistic people, they can be very cognitively rigid and they lock onto something and they’re afraid to change their objective because they’re afraid they’re going to lose something, but that’s not the case. So for example, at one point, I thought that I wanted to do private practice social work and public speaking. Well, the public speaking all crashed and burned. So I had to change my career objective in reflection of that, right. They can provide, I mean, they’ve purchased computers for both of us. Now, they don’t provide a computer just to help you go to college.
There has to be a specific disability related reason why you uniquely need a laptop because everybody has to have a laptop to go to college now. Right? So in my son’s case, he needed a laptop of a certain capacity because he has to have a reading software that reads out loud to him. So they won’t load that software onto a personal computer, but they’ll load it onto a government computer.
So we were able to get PCs for him. I do a lot of public speaking and training, as you can tell. And so I argued that I needed a Mac because they produce a better product. And then later I was able to say, I’m in the middle of a dissertation and I can’t transition to a PC. I still need a Mac. So there’s ways you can negotiate to get whatever you need.
But some states only provide VR services to people with intellectual disability because that’s their priority right now. Some states will provide assistive technology to people with developmental disabilities, but they won’t provide job coaching for them, for example. So again, plugging into those regional support mechanisms, the ARC, the autism society, there’s other global groups that are like disability coalitions.
Like those bodies can really help you nuance what you need to know for that individual state.
Brynne: Absolutely. That’s just so huge because it sounds like even though there might be funding available to pay for your kid’s college, there might be funding available to cover some of this technology that will get them through either the job training or the college or university that they’re attending.
But if you don’t ask for it the right way, you’re going to get denied. So it sounds like just really being able to talk about how this technology or how this training or education is going to help you reach that long-term goal, you’re allowed to set your own long-term goal, but having it, and then being able to reference back to it as the end point.
I feel like a lot of parents might be familiar with that process. It sounds a lot like going through an IEP where..
Dena: Very similar. Yeah. But the other thing I will say, too, that in terms of utilizing voc rehab, I don’t want to underestimate the value of networking with other parents. Some of these people have already figured this out through trial and error.
And so, you know, picking the brains of other people can be very helpful. But as you can imagine for autistic adults often isolated in their communities without a support network already in place, finding those informal social supports is impossible. So I think we really need to, again, look at our local support services and provide a different level of care for those individuals.
And there’s two other really important things people need to know. Number one, if you crash and burn, you don’t pay this stuff back. People are afraid they’ll have to pay back the money that’s been invested. Number two, you don’t have to give the equipment back. It’s yours to keep, unless you’re like negligently with intention, like blowing things up.
I mean, that’s not a problem. The other thing parents don’t know is there is a student loan forgiveness protocol whereby any of the loans that the student took out can be forgiven by the federal government with a relatively simple process. It was absurdly easy compared to all these other things we talked about.
And so I tell parents A, go big, right? Don’t be afraid to look at an out-of-state program. And secondly, don’t be afraid to indebt your child. If you don’t think that your child is going to be working full time or full time for a few years, cause it’s, there’s a timeline involved. Go big, go out of state, go to the very best program money can buy and put all the debt on the student. Do not take out parent PLUS loans.
Because those don’t get forgiven. Right. And those have accruing interest. The only way parent PLUS loans get forgiven is if the parent doesn’t work full time. Right. And they apply for disability. But I mean, my son had, I don’t know, $20,000 in student loan debt, that was just erased. And the last bit of wisdom I would give around post-secondary is please, please consider not using the community college system.
That’s shocking to a lot of people. But the vast majority of students with IEPs go to community college. That means the disability support officer at that community college is going to have maybe a hundred kids on their caseload. And in a class of 30 students at a community college class, I’d say 60% of those students are going to have disability needs.
And it means you have to complete to be heard in terms of getting support services at the community college level. However, if you take nine credit hours, say the smallest state university in your state. In a class of 30 students, there may only be two students with IEPs and this disability support person may only have 15 or 20 kids on their caseload.
That was one of the first judgment calls we really messed up on. We sent him to a very, very tiny private college in Florida. And every student in the class had disabilities. And so he was completely ignored because he was a high support needs student. Cost a lot of money, but we dismissed all those student loans with this process.
I just want to like wave a flag for Marshall University. My son flourished in their program and the program is so successful. They have the highest retention rate in the country. For students succeeding to matriculation because the program is individualized to the student and the program has a global balance of needs.
Right? So some years they may take students that have higher support needs. Other years, when those students are still in the program, they may have to accept students with lower support needs to make sure they have enough staffing to address everything. But it’s just amazing. And the rising junior and senior summers, students can go there to take three credits over a six week period.
When the campus is slower, the academics are quicker in terms of it being a six week program, you have class every day, but the campus isn’t so crazy wackadoodle with so many people. It also helps the families to say, all right, here’s a gap we hadn’t really thought about teaching him to do his laundry or here’s a gap.
We haven’t really taught him how to order his prescription medications. And you don’t have to stay at Marshall to use the summer program. So again, go big invest in that six weeks. Just to identify what really needs to be worked on for them to be more effectively prepared for school.
Brynne: Absolutely. I’ve been wanting to ask someone this about the college process for so long.
How did you pick a school and everything? And it sounds like picking a school where the population of the student body that has a disability is actually lower in some ways can work towards your advantage. You also said that your son ended up at Marshall eventually, which has a very robust program for students with needs.
So how should parents kind of evaluate which schools have programs that work and when should they prioritize, I guess that ratio that we were talking about about advisors to students?
Dena: I would say, if you want to send your kid to the community college to take a class or two, in other words, they’re not using VR funding, they’re not seeking a degree path.
They’re just trying to see if college is for them. You know, maybe right. But the other challenge that families face is kids who don’t want to be disabled anymore. It’s that’s a whole can of worms where we have a young person who has internalized ableism. They may have shame around getting services and they want to go to college and just do it on their own.
It’s a disaster. I just have to say, it’s extremely rare that those kids survive it because they do need those essential wraparound supports. And again, disability services can be very inundated with, with needs. My recommendation, my very fierce recommendation is to find a program that either has embedded specific autism supports in their disability services.
So, say for example, on the east coast, there’s Mercyhurst in Pennsylvania, there’s Adelphi where I’m a graduate student that has a program. A lot of programs articulate. They have an autism specific program. What we found is that most of those programs expect the individual to attend class autonomously.
And so for my son, even the college specific programs, the autism specific programs, were not intensive enough. They expect you to use them to help translate maybe a little help with our executive function. But basically they’re just going to provide some structure. So. Instead of going to class for two hours a day, and then just watching video games all day, they make you show up at a certain time to do a certain amount of study.
Right? The Marshall program is different in that, as I said, it’s individualized. So my son is a rule follower, so they didn’t need anybody to make sure he was going to class or going to bed at night or that he was meeting his criteria. He never failed to show up for the job, but he needed a master translator.
So his coach would say to him, okay, we have a paper due in two weeks. Tonight, Your assignment is to go to your dorm room and write five important things about world war two and France or whatever the topic was. And then my son would come back and he would give him his five key points. And then the coach would say, okay, write three sentences about each of these five things.
And then he would do that and he’d come back and he’d say, okay, let’s expand these sentences into paragraphs. And you can see how labor intensive that process was. My son dictated most of his verbal work after they got past the bullet point status. We also were able to hire a second tutor during science class because the professor thought asking tricky questions was appropriate, you know, whatever.
And so we hired his teaching assistant to be Patrick’s tutor. And she voluntarily went to the professor and said, can I reword the test so that there’s no trickiness. It’s on grade level. It’s the same curriculum, but not tricky. Like, you’re not going to find that anywhere else, like that’s above and beyond that minimum accessibility standard for a college to provide. For other kids, you know, they had a lot of social extrovertism.
They were more like my presentation of autism and they would get into a lot of social challenges. Right. They would get into trouble at the cafeteria or students would have so much performance anxiety that they would be walked to class. And they would go in the front door and exit a side door. And so those students got a different kind of support, right?
There are a lot of college programs out there. You’re going to want to evaluate them far ahead of time. Right? You don’t want to be doing this their junior year. You need to be doing this. Like, I don’t know, eighth grade, ninth grade so that you can kind of determine the cultural supports, the environmental supports, how much autonomy each program requires before you’re pressed to make a decision.
Right. I encourage a lot of parents to exam and all of that. And then minimize how many visits you’re going to make based on say the two or three programs that you think are going to work. And then the individual gets to choose where there’s a fit. You know, for example, Patrick was challenged in the program we looked at in Florida over and over again, right. To prove his competency. And he sensed that, he was very shut down. He was very overwhelmed and angry at the way he was approached. He goes to Marshall and he brought with him in his backpack, unbeknownst to me a movie that’s actually an elementary school interpretation of people settling the United States.
Right. And so, you know, I’m having all those mommy panics about, it’s not on grade level. Don’t bring that out. Like I totally screwed it up to be frank. And the guy who interviews him, Mark Ellison, who I adore upon seeing Patrick’s video. Mark’s one of the whispers. He goes, what do you have there? And I’m like, oh my God.
Oh my God. Oh my God. Patrick pulls out this video. And he goes, well, it’s the story of when, um, when America did XYZ and Walter Cronkite plays whatever. And he goes, and he opens this map that came with the movie that I didn’t even know was there. And he goes, ‘As you can see in that time, America was very rough and the terrain was very much like Afghanistan today.’ And Mark goes, ‘That’s brilliant, Patrick.’ And he was accepted into the program based on that interaction.
But culturally, Marshall looks for strengths in non-traditional ways. Right? So that’s a very unique experience. So those are the kind of nuance differences that people need to examine to see what works for their kiddo. And what doesn’t.
Brynne: Absolutely. That stuff matters so much. Now, if you, maybe you want to pursue a college education in pursuit of this as well, but VR does have funding to help entrepreneurs and self-employed people too. From the anecdotes I’ve heard, it’s an extremely difficult way to try to get them to spend their money, but it is a way that they can do it.
So I’m wondering if you might have any insights into the potential support that people can get from the VR office in this situation?
Dena: Yeah. I’ve actually utilized that system twice in two different states. And the reason it’s so difficult to navigate on the inside is that they don’t do it very often.
Right? It’s, it’s a skill set that many of the VR offices is simply haven’t developed. And quite often, even when they have approved it, it’s been for very simple things. Like they asked me to change my employment goal to something like being a hot dog vendor or cleaning houses. Like it’s very, frankly focused on employment options and skillsets that are kind of oriented to people with intellectual disabilities.
And so, I mean this whole wave of individual with simply developmental conditions and not intellectual conditions, it’s really pushing them. You know, they, they just kind of like don’t know what to do with us. So the trick to using self-employment options is number one, you have to be able to demonstrate the ability to identify something that you have the skills to do, and that there’s a place in the market for, and that it’s not really a glorified hobby.
So for example, I told them that I wanted to open an office to be able to do public speaking. Well, I had an extensive experience with public speaking. I was able to demonstrate that I had made some money at it, and they were listening to many of these trainings.
So they knew there was a need in a market for what I had to offer. But they really struggled to justify it because I wasn’t able to do the financial management of the office. And I had to call them out on that ableism and point out to them that the Rolling Stones do not manage their books. Although Mick Jagger is actually an MBA just to let you know, but you know, they don’t manage those day to day things.
This is what neuro-typical people do. They lead with their heart. They lead with their interest, and they hire people to do the things they’re not really good at. But there was a double standard for me. Because they wanted me to be able to demonstrate that I could do everything it took to run a business, and that was just totally inappropriate.
So I had to hire the office of protection and advocacy. Again, like VR, every state has a different name for this, but they are the entity that guards, uh, people’s civil rights. And one of the areas is in navigating VR. So I had to use another agency to advocate for me with VR, but ultimately I received what was in effect, after I created an expense sheet, I was able to generate almost $20,000 into startup costs to get this business started. Now, you have to create that list of needs everything from the trash cans to your business cards, to start up costs for a phone, technology equipment, you need to start a business. That’s how self-employment works.
And so, again, like I said, using the office of protection and advocacy who had that insider insight into how to navigate self-employment was quite helpful for me.
Brynne: Absolutely. And I’m wondering with this funding, when you’re listing startup costs, do you have to prove that all of these expenses are related to the disability?
Or can you just use them for startup costs generally?
Dena: Yeah. It’s, it’s more of the second, right? So you who can run a business without a laptop, right. And they purchased QuickBooks for my accountant to use, to manage my finances. They paid for the phone and they paid for the first six months of the phone bill for my business phone.
Right. You know, I had to open a separate bank account for the business expenses. So that’s kind of how that works.
You know, they do pay those startup costs.
Brynne: Gotcha. Gotcha. Now, along a similar line, I do want to take a second to just acknowledge this thing that exists. I’ve seen a lot of young adults funneled towards this program before, especially when they reach out to their VR office and there’s not necessarily like a clear goal, right?
Like there’s not a clear career objective. It’s kind of that situation where you’re going to VR and just like, okay, what do you have for me? But there’s this thing called the special minimum wage certificate. And that’s part of a really old law that dates back to the great depression. So what it does is it funnels young adults into these programs at places like Goodwill participates in it a lot or other employers who view giving disabled people work as charity in and of itself.
And then they’re paying them like, a ridiculous amount of money. Sometimes it can be less than a dollar an hour.
Dena: Yeah. There’s, there’s a tremendous amount of controversy around this. And, you know, I’ve adopted a philosophy that there’s no functional purpose for this. In terms of Goodwill, they’ve shifted away from helping people with IDD largely.
And they are leaning toward COVID long haulers and people who have chemical dependency issues because they’re easier to work with, to be frank about it. And you know, a lot of families feel like they’ve been mistreated in that transition. Our point of view is what is the purpose of what you’re doing? And so a lot of families who have engaged with these models say, well, my child really loves feeling like they’re doing something and they’re going to work.
First of all, they call their adult person, a child, which grates me anyway. But what they’re really looking for is a day program that’s engaging and meaningful, right? And so instead of spending this money on these sub minimum wage jobs, and not properly compensating folks for their work. What we really need to do is create meaningful day programs that are engaging and meaningful, so that they’re like going out in the community, they’re going to the movies.
They’re learning how to make a purchase at a supermarket, things that are more valuable for their day than going and sorting things on hangers all day long and getting paid a dollar an hour. Right? I don’t believe in a sub minimum wage, I think if a person’s working, then they should be paid minimum wage.
They should be making their $15 an hour. But for that to happen, we’re also looking at part B of the problem. These caps on social security are below the federal poverty line by thousands of dollars a year. So we definitely need to increase what people can have in terms of assets. You know, it goes back to my very first statement.
What we’re talking about is an undue amount of administrative burden. Many government entities, I won’t pick a side here, but you know, they talk about this through the lens of preventing fraud, but most of the fraud in these systems happens from the provider point. You know, the consumers very rarely defraud these systems.
So we really need to make these systems more accessible. The social security red book, which is supposed to be the Bible for navigating that system does not even have the word ‘accommodation’ in it. I think that says everything. You cannot go to a social security office and use the word accommodation and expect to get something for it.
You know, we have a long way to go in terms of policy and systems change. But in the meantime, I think creating agencies who hire highly knowledgeable people in specialized areas from IEP to early intervention, to social security, to voc rehab, to help families navigate these systems is really important.
And I also think that we need to face the reality that there’s an entire wave of adults out there who have never had services that need much more intensive support than what we’re acknowledging to do the same.
Brynne: Amen. Amen. So I’m just wondering how parents can kind of bring this up and help connect their school district with that VR office so that they can work collaboratively together to get this handled early.
Dena: Well, I think first of all, parents need to be examining the construct of post-secondary programs, regardless of where the student is in middle school for the most part, I mean, there’s going to be a subset of kids who are, you know, moderately, intellectually able, whose needs exceed what we could consider usable in a traditional post-secondary setting.
But if you had looked at my son in the seventh grade, immersed in an educational system that was massively under supporting him and then using his functional capacity without supports to decide whether he was worthy of, you know, being even included in the mainstream classroom. It would’ve looked like he would never go to college.
Right. We left the school district in North Carolina because they decided that his academic needs were so significant that they weren’t going to give him a teacher to be able to access the environment. So they took him off diploma, track entirely. So I always tell parents to aim really high. There’s also a program called project search, which helps people with developmental and intellectual disabilities for whom traditional college may not be an option where they can work in a university setting doing, you know, job tasks and experimenting with different jobs.
There’s also think college, which is more and more sending people with intellectual disabilities to have a traditional, post-secondary experience, some of them can live on campus, but they take classes that are more oriented to autonomous living. And then they audit classes of high interest. Right. But they can also be working with the football team on campus.
So the idea that we just think that it’s okay to not provide any information about these options. For these families in middle school so that they can start looking at these multiple trajectories that are options is absurd. You know, and frankly, it’s a violation of IDEA. IDEA is very clear, but they’re not only supposed to prepare them for post-secondary experiences, but life beyond high school, that’s not just an IEP on academics, right.
We should be providing a global wraparound of transition services that includes daily living skills to help prepare these students to do well.
Brynne: I’m wondering if you can tell us a little bit about just what those transitions services look like, and it sounds like funding for those services can be available through VR, but I’m not sure if I’m right on that.
Dena: So VR doesn’t usually, well, again, it’s state to state. Some VRs have summer programs with job coaching that they will pay for before they exit high school. But generally there’s like a hard, fast invisible wall between post-secondary training in high school and after high school and VR kicks in after high school.
But with those exceptions excluded, you know, these are services that should be provided by the public school. So for example, in our case, although my son demonstrated some remorse, we did opt to do a fifth year for him so that we could slow down the academic approach and focus on transition to college skills, right.
Those independent living skills, and it was usable for us. For high intellectually able students and even into my son’s range of more moderately affected the stigma of staying in after their rising senior class leaves becomes too much. So there’s a program, for example, in New Jersey where they do have a more effective community college program.
And they did it by suing the public school system to move some of the transition funding into that community college. So they had three high school teachers who were assigned to teach out of the community college. Kids would exit their program in a timely fashion at 18, and they would move to the community college.
They could either take community college coursework and have the additional support of the high school teachers and their IEP. They could be finishing high school there. And have that special education support at the community college, or they could have employment happening at the community college and have that special education support.
In my mind, that’s a much more doable model because they’re with same age peers, you know, my son was 20 years old and still in high school. And that comes with an entirely different level of stigma. That’s not ideal, but I think, again, this is something that public schools need to be doing. And it was a great model because it wasn’t a community college that was inundated.
And they also had recreational programming, which a lot of community colleges are just boxes where people take classes and there’s no social interaction. That’s a limitation for our people who are evolving and having emergent social capacities cause if the community college doesn’t have. Uh, recreational environment, then people come in and take classes and go home.
There’s no opportunity to continue their developmental trajectory in terms of developing new skill sets. And there are exceptions, you know, you just have to really dig into your local community and evaluate it. When I was in Nashville, I took a community college class. And that’s how I learned how inadequate I actually dropped the class in four weeks because I became so overwhelmed at the lack of consistency and support, but that was one program in one state in one region.
So you really have to like, again, interact with other parents, interact with other networks and agencies in your community and really examine what’s available for you.
Brynne: Such wise words.
Dena: And I don’t want to leave out housing, right? I have a friend whose son went to Mercyhurst. They don’t have private dorms at all.
They have basically apartment housing for everyone. So that means that the autistic individual has to be able to live with two other people and collaborate in terms of living together. At Marshall, my son lived in a flat in the gifted programming, dormitory housing, and he had a room that was so small that when you sat on the bed, you could touch the other wall.
But it was his private space. And then ultimately he moved into an apartment off campus. For Mercyhurst, you absolutely have to cohabitate with other people. There are no private rooms at all. These are the kinds of things you really, really have to look into.
Brynne: Definitely. There’s so much nuance to consider.
Dena: And it’s the little things like when Patrick was at home, I taught him how to do his laundry. And I said to my daughter, Patrick is not able to do his laundry. He doesn’t sort the light and dark. And she said, mom, college students don’t do that. I’m like, oh, thanks for that reality check. So I bought him all beige clothes, you know, or sent the jeans that have all faded, you know, so that he couldn’t mess that up.
But we also went into the dorm and we painted red nail polish on the settings, on the washer and the dryer. So he didn’t have to hold the memory of what to do. And call on that every week. It was automatic. Right? And when he lived in the dorm, he used a coin. No, he used a card system. You had to swipe a card. Well, he didn’t have to do that at home.
So the college autism program sent us his person over to show him how to use the laundry equipment. And then he moved into his own apartment and it was a coin system. So the college program sends somebody over to orient him on how to use a coin system for the laundry. And it was only at that point that I realized the reason he couldn’t sort his laundry is because I use the terms light and dark, which were very abstract and meaningless.
But when I said specifically put your black shirts and your jeans in this load and everything else can go in this load, suddenly he could sort his laundry. So it wasn’t about his skills. It was about my teaching limitations. Right. So, you know, we, what else did we do? We put a black magic marker, drawing an arrow around how to shut off the water in his apartment.
In case, you know, he overflowed the toilet or something. We left a key on campus with the college autism program in case he locked himself out after he did once. There are natural consequences that are very teachable moments. He never locked himself out again. When he had to sit on the stoop and August in the heat, waiting for somebody to come rescue him.
It was interesting. We knew the people who own the building. Uh, where he rented. So every month he would take his rent check downstairs and he would sign it and they would load in all the information for him. The skill set, a person needs to enter post-secondary options are not adult level needs. Right.
We keep thinking that they have to be autonomous. But that’s a lie nobody’s autonomous or independent. We are, we’re all interdependent and collaborative. If we’re successful. And we learn how to use other people to help us when our parents, can’t be there at that’s why we sent him to college. So he would go down the hall and ask his roommate what was on his foot when he developed a blister and what to do about.
Right. We wanted him to learn how to depend on someone else. We weren’t ever seeking for him to live independently. And that’s a very different bar. We anticipate him needing a housekeeper once a month for the rest of his life. We anticipate that he will be able to live in his own apartment, but probably will need to live near his sister.
So she can make sure that the paperwork is turned into social security on time and things like that. But he can, you know, he lived in his own apartment for two years. And in middle school, they told me he would never be able to live independently. They told me that when he was three. So, you know, I just tell people, don’t listen to all of that, try to just open the very next door and maximize opportunities and they’ll do what they can and then give them the freedom to fail.
And just say, you know, you didn’t fail. The system failed you. Or we chose a goal that was, you know, beyond what you could do. I can’t be a brain surgeon. You didn’t succeed at college, let’s find a different path, right? Like no failure option is what’s really important. I hope any of this is helpful, usable, translated appropriately. So people can really utilize it.
Brynne: Oh my gosh. A thousand percent. And thank you so much for being here with us today. Before we go, I do want to ask you what are like the top, like one or two places where people can find you and connect with your work. Everything that you’ve provided today is so, so helpful to me as a parent. And I know we’re going to have listeners to want to connect and learn more, as well.
Dena: Currently I’m in the very bitter throws of writing a dissertation. And I’m really keeping my availability very, very limited right now because I just can’t do anything but dissertate. Plus I’m doing all of this international science research. I’m on five or six different research studies. So really right now is not a good time for people to be able to find me in terms of individual casework or anything like that.
I do have a Facebook page called the center for understanding that people can join. If they just want to see me, uh, they’re posting autism research and autism news and disability news more broadly. I do like have a little bit of a Facebook addiction. So I post not my work, but the work of other people there quite often, and that’s the best place to be exposed to my work.
I’ll probably be doing some training events occasionally, and that’ll be publicized there. But unfortunately until I finish this dissertation, my access to, you know, the general public is pretty, pretty tightly guarded, but I’m really glad that you persisted. And we got to have this time together because I’m really better at giving this information to broader audiences because I can impact more people that way.
As compared to me working one-on-one with a family. I’m hoping after my dissertation to develop a train the trainer model, where I can actually teach systems navigators more detail about how to do this. I want to acknowledge that part of the reason I’m effective at this is because of my broad reaching knowledge of how autism expresses itself in a variety of people.
I’ve helped over a hundred families work through this system. And I don’t think that’s replicable, but what I taught you today is replicable. And I think that we can create agencies that do nothing but the systems navigation support. So that’s where my longterm professional goal is, and I love doing autism research.
So I’ll be probably camping out there. Lastly, let me just say, I teach a class at Towson University, a transition to adulthood class in their health sciences department. It’s taught online and some semesters people can audit that class. Other semesters, uh, like for example, I have five occupational therapy, PhD students right now, like that we can’t move those folks, but people can contact my supervisor.
Who’s Dr. Connie Anderson to ask what semester they might be able to come in and take the class free standing from the. Autism certificate program if they’d like to. So those are just some places that I can, I can see people and find people. And that whole semester focuses on all of these systems, all of the social justice issues.
We talk about the neuro-diversity lens and exiting the medical model.
Brynne: Thank you so much again, Dena.
Dena: It was a blast. Thank you for having me.
Joyce: Thank you.
(whooshing sound)
Brynne: Thank you so much to Dena for sharing so much knowledge with us over the last couple of weeks. I know Joyce and I learned a ton and we’re hoping that you did, too. If you enjoyed this episode, we’d appreciate it so much if you could leave us a five star review and subscribe to the podcast on whichever platform you’re using to listen, whether that’s Apple Podcast, Spotify or another one altogether. We hope you’ll join us again next week for a discussion with Blake Bauman of ASPIE-R coaching about how to teach career and life skills to ask the teens and young adults. All right, we’ll see you guys next week!
Joyce: Bye.