- [Announcer] "Flatland" is brought to you in part through the generous support of AARP, the Health Forward Foundation, and RSM.

- Hi, I'm D. Rashaan Gilmore.

Welcome to "Flatland in Focus."

For this episode, we'll be talking about some of the obstacles for youth with developmental disabilities.

As they transition from school to career.

(upbeat music) A recent study found that only 19% of people with a disability were employed compared with a whopping 66% of folks without a disability.

While support programs do exist in both Missouri and Kansas, parents of folks with disabilities face multiple barriers such as limited time, income, confusing paperwork and timely support.

One of the biggest challenges named by parents though is navigating the transition from early education to adulthood for their kids with disabilities.

So let's take a look at some of these obstacles and hear from some who are creating the networks they wish they had access to.

(inspiring music) - This is my favorite picture.

He was a newborn.

When I found out Gerald had autism.

Oh, it just seemed like resources were not here.

I'm on the internet.

I'm looking, oh wow, that's in California.

Oh, that's in Arizona.

Your insurance only covers a thousand dollars.

You know, therapy is $189 an hour.

I mean, I felt like I was out here just swimming trying to figure out where to go.

Our biggest challenge at his age right now and his transition into adulthood is just gonna be putting things in place where he is safe and comfortable and can grow.

- My son Kendall, was a teacher's pet.

Absolutely love school.

Wish it could be seven days a week.

Wish there could be no such thing as summer break.

So this is an assistant communication device and this is how Kendall communicates.

He had just such anxiety just trying to get him to understand that school was over.

We thought we were making the right move with him being in a day program where he would learn social skills, he would learn some job skills, and it was a disaster.

And I got a call saying, Kim, come and get him.

He's flipping out.

We've called the police.

I get there.

My child is handcuffed, shackled and muzzled.

It's a never ending worry as a parent.

I mean my son is a big black male in a society that is very hostile to black males.

And so you add a disability that plays out with troublesome behavior on top of race and absolutely, I live in fear.

I can't shelter him.

I have to do my duty as a parent and prepare him to first of all be a man, earn his own way, and be as independent as possible to prepare for life when I'm not there one day.

- A lot of the supports that students are required to receive while in post-secondary education drop off as soon as the person graduates and so up to the student and their family to connect that individual with services.

You shouldn't have to be a lawyer to be able to access services as a disabled person.

If you're on SSI, you're automatically eligible for food stamps.

But a lot of people don't know that.

A lot of them are eligible for housing support.

A lot of them are eligible for a lot of other different services but some people don't understand that system or they have to go to every single office to get every single service that they need.

- You have to apply for and receive benefits in order to get some of the supports like a job coach.

And it seems like a never ending trail of paperwork and people who talk in very bureaucratic language and so many families throw up their hands and say, "This is never gonna work."

- We often talk about this transition cliff that people experience that you've had kind of your K-12 public education, you've been engaged in that way, and then what happens afterwards?

How do we effectively plan for that transition?

Plus, we really want people with disabilities to be driving that process of what do they want to do after school?

What is their goal and vision for the future?

A key focus of disability policies ranging from, you know things like the individuals with Disabilities Education Act and the Americans with Disabilities Act that really says that again, people with disabilities have the right to fully participate in their communities.

However, we still have societal and institutional barriers that are limiting people from achieving that right.

Participating fully in society means being paid a competitive wage for the work that you're doing and environments that take away that right and that access are not aligned with disability policy.

And we've seen plenty of, you know, federal kind of pushes to make sure that we are providing access to competitive integrated employment that while the initial thought on these types of environments was it would support transition into competitive integrated employment the data hasn't borne that out.

Instead, people wind up in these settings for the long term.

- Over these past almost 10 years, we have gone from serving most of the individuals in those sheltered workshops to serving over 300 people in the community.

We are utilizing a 14(c) that gives organizations permission to pay sub minimum wages.

You cannot operate a subcontracting program like this without paying sub minimum wages for the individuals that we serve.

We would go bankrupt.

The 14(c) certificate allowed you to say, "Well if a person without a disability can do a hundred of these in an hour and your son can do 20 then he makes 20% of whatever the prevailing wage is.

(intense music) In 2014 was when the WIOA legislation was passed.

Prior to that, students could go straight from high school into a sheltered workshop.

Functionally, the big thing that happened was it said that was no longer allowed unless they had tried community employment first.

But I remember going in meeting with high school transition coordinators and having them be so frustrated with me.

I have this group of kids who I want to send to you.

Why can't I just send them to you?

The teachers are just under-resourced and they don't have time to, they can't be experts in this.

That's not their job.

I mean, the reason Missouri has been able to be a holdout is because they have this, the funding is set up differently.

Many, many states, the shelter workshop systems were tied into the Medicaid system.

And so when the federal laws changed about Medicaid dollars being used for sheltered workshops that essentially moved those states forward.

In Missouri the workshop do not take Medicaid dollars.

They're funded through the actual work contracts that they get.

Because of that, they haven't had to move as quickly.

(intense music) - They're sending a lot of money back to the federal government because of the way that it's funded which creates this ever cycling process of not providing enough services for disabled clients.

- We are hoping to show a path because the SB40 dollars, I mean that money was there for the sheltered workshops.

That's why it was set aside.

If the world is going to change then that money has to be used to help support these workshops to make those changes.

We've got people who are in their forties and fifties who have never had any services except to come to work at the workshop.

It's not something you can just say today we're gonna be done.

'Cause if you did, either you would go bankrupt because you can't meet your contracts or you're gonna pull a rug out from all these people who you've been serving for 40 years.

- We can only really support these youth by helping them to connect to their talents and their gifts.

Now that we have those talents and gifts now let's help you to find a job even if it's self-employment that really aligns with your talents and gifts.

(intense music) So we are getting ready for our second annual KC Diversibility College and Career Fair.

Let's come together and let's provide on the spot sign up, application, intake.

We understand that we won't be able to complete every process but let's do as much work as we can to get families through the finish line.

- I'm just working through like a different kind of job that really just like helps me bring people happiness.

- What I like is it gets all of those vendors together, the businesses.

There's a lot of government agencies, colleges and I've gotten more information today than I have in years.

So it's really, really good.

And then he came as a guest and you found some really good things too.

- We're getting all kinds of information here about vocational rehab and classes that he can take and assistance that he can get to help him learn how to be independent.

- There was so much power in us coming together.

We truly figured out we're better together.

Creating those seamless delivery systems.

That's the ultimate goal.

- We still have a long way to go.

And particular in this actual just belief in what disabled people are able to do.

That very simple question of what do you wanna be when you grow up is a big like changer.

That's an actual perspective that this child is gonna grow up to be something.

So what do they want to be?

- All right.

Welcome back to the studio for the in-studio discussion portion of today's program.

With me around the table today is Halie Bishop, the Employment Program Manager at The Whole Person, Amanda George, a Developmental Disability Services of Jackson County EITAS, Kim Riley, founder of the Transition Academy, Evan Dean, Associate Director of the KU Center on Developmental Disabilities, and Shacara Pearson.

A self-advocate living with cerebral palsy.

And I wanna start with you Shacara.

Can you tell us what Cerebral palsy is and how you are navigating life?

- Well, cerebral palsy for those who don't know is a brain injury.

And the part of my brain that doesn't work is the part that tell your legs and arms to move.

I need help with getting myself dressed and taking a bath and cooking and cleaning and getting places and stuff that normal people can do as far as everyday physical things.

- It seems to me that while there are a number of things that you just mentioned that you do need assistance with are there things that you enjoy doing on your own?

- Yes.

I enjoy making my own appointments and putting my own personal calendar together and making my own decision to be able to go hang out my friends and put stuff together with them to go hang out with them.

- You know, Shacara talked about making her own decisions.

Having that personal agency, that self-determination where does that factor into the programming and work that you do?

- I know the whole focus of high school is typically like let's figure out what's next.

Unfortunately, students with disabilities do not have that same right, in many cases.

And so we're there to show them what opportunities are available, but we start with understanding much like Shacara, what are you interested in?

Everyone has a talent, everyone has a skill, a gift.

Let's figure out your talent and skills and then let's connect them to career pathways and help you to be successful in life.

- I think that's so beautifully said and I think about a lot of the nonprofits that I know of I have worked with.

I mean there's usually some compelling story behind it and I'm interested in your compelling story.

Why did you start Leadership Academy and what is the work that you're most proud of?

- Well, of course my inspiration like many of us is my son.

My son Kendall.

He is 24.

He will be 25.

I know that's hard to believe since most people think that I'm 25.

- I was shocked.

Absolutely.

Yes.

- I yeah, I know.

So just for the record, yeah that's what's going on with us.

I just remember constantly being summoned to school for a meeting.

And it was like we're going to have a transition meeting.

And I thought, oh great, we're finally gonna roll up our sleeves and really give him a chance to test drive some opportunities and figure out what he's interested in and then support him in reaching his goal.

And what I was realizing that we were just gonna sit around the table much like we're doing and talk in philosophical terms.

And I started reimagining the solution that I wish was in place for Kendall.

And slowly but surely that became the Transition Academy.

- What are the role of like shelter programs as they're called?

What do these programs, these workshops do in Kansas and Missouri and what's the spectrum of resources available to people living with disabilities who want to work - So I think we need to really focus on national and state policy that really shows that competitive integrated employment.

So that's working jobs like we all work, you know alongside people with and without disabilities for competitive wages is really the outcome that we're talking about and that that we want for people.

You know, a lot of our research has shown that the way to really show those competitive integrated outcomes is for people to have experiences like Kim was talking about, to really, you know think about the careers that you want and to go out and have employment experiences work in the community and things like that.

- Pushing sheltered workshops are more not as inclusive environments definitely kind of sequester individuals with disabilities away because they're not ingrained and they're not out in the community doing competitive employment.

I think finding individuals with disabilities competitive integrated employment out in the community not only helps people feel more comfortable and more accepting of that community and helps them realize like they can work.

This is something that they can do and eventually hopefully makes them a more inclusive employer in general.

But I think they're missing out on really quality, loyal reliable employees if they're not hiring individuals with disabilities because they do wanna work.

They take pride in working, a lot of them.

That's their goal.

They wanna do work.

- So does The Whole Person have a whole different perspective on how it approaches this truly, you know community integration sort of perspective?

- I think it's really similar to what Kim and Evan have both said.

We really pride ourselves not just as in the employment sector, but as the Center for Independent Living where individuals with disabilities make their own choices and we pursue the interests that they have.

We work a lot on finding them more customized placements.

So maybe there's certain aspects of the job that they can do really easily without accommodations and maybe there's parts that are more challenging.

So we work with the businesses and the employer to try to find the right fit for those individuals.

- What are some of the misconceptions about the abilities of people who are differently abled or who have developmental disabilities?

What are the biggest misconceptions that most of us have?

And I would be willing to bet that these are some pretty broad brushstrokes that most of us use.

- I learned that people who don't know folks with developmental disabilities assume just what they've heard their whole life.

Maybe that people aren't able to make decisions that they can't work, that they need a safe separate program in order to be taken care of.

What is also alarming is the low expectations that people have.

- Say some more about that.

What are these low expectations that they can't deliver?

They can't really show up or what is it?

- Yes.

How, how could they ever understand a job?

How could they do more than attend a day program or stay at home?

They could never run a business.

They could never work independently.

They could never, what would they do with money?

- What are some of the biggest challenges that you find in trying to convince them if needed of their own abilities?

- Well, a lot of youth with disabilities have just not been exposed to a whole lot.

The bar is so low as Amanda's shared.

And so if they've just been in school from like maybe ages three all the way up to 18 to 21 they know their school routine and then they've kind of just been reminded that they're different and in a negative way.

So many times they have self-esteem issues.

Many times they don't want to be outed.

And so.

- So the stigma is a big part of all of this.

- The stigma is huge.

And if more people with a disability disclose their disability then we would actually, as a society see how normal it is and we could break down some barriers.

- What is it that employers may be getting wrong?

- To Kim's point, a lot of what we're saying is like you do this, you hire people with disabilities and work with people with disabilities all the time.

So it's not really different.

Some of the other myths that we hear about hiring people with disabilities is that the cost of accommodations is gonna be so high.

- [Host] Big one.

- But really there is research showing that to the majority of accommodations don't cost anything.

It's more about kind of giving people a little more time to complete projects or be having a flexible schedule.

Things that a lot of us need also.

And the accommodations that do cost money are usually $500 or less.

- So that really just begs the question, Halie, for people that you serve at the whole person what is it that they walk in the door seeking or needing most?

- A lot of our consumers just come looking for advocacy or how to advocate for themselves whether that be in the employment realm or maybe in a different area of their life.

But a lot of them aren't sure how to approach an advocate.

They know what they need and they know what they want but they don't know how to go about asking for that from the people around them.

- Okay Shacara, I've gotta ask you this question.

You know, what kind of resources and supports have you been able to connect to to help you live the life that you want to live?

- Well, for me, I go through Ethos and I have a case worker, who helped me find different opportunities.

And I'm going through a program called Job One to find a job.

And Job One helps people with developmental disabilities that wanna get on the real world and have a real job and earn real money.

But a lot of people think that people with any kind of disability can't do anything.

But that's not true.

- So what was the process of finding these supports like for you?

Did you have trouble navigating to those resources?

Did you struggle to access them?

- I had to have a conversation with my support coordinator and I really had to tell I had to tell her that I really wanted a job and she supported me through my job process.

People with disabilities just need to speak up but some people with disabilities don't have the support to speak up so they just sit around and then stay at home all day.

But there's more to life besides sitting at home all day.

But they don't have the opportunities to or the resources to get out there and find a job.

- Disabilities is one of the most bizarre sectors that I've ever been in.

There is no like one stop shop.

It is very word of mouth.

Disabilities, there are a lot of meetings.

You go to the meeting and in a split second you're supposed to make a decision of what you're supposed to do with the rest of your life.

And no one else is treated like that.

Everyone else is like, okay, here's a database.

Here is, you know, search here.

Disabilities is very much like someone sizes you up and down and says, you know what?

You fit in this box.

Instead of you just being able to navigate on your own.

And that is one of my frustrations is that there isn't like a centralized up to date list of resources where you can literally search by your interest, by the disability supports that you need by your zip code and then get a customized list.

I'm actually working on a solution to that because I feel like it's just a basic human right.

- At EITOS we say we wanna stop being the best kept secret in Kansas City.

And so we're trying to put our name out there so people know we serve people from birth through death who have developmental disabilities.

And we can get you a case manager.

We can help with transportation.

We can help with finding those community resources.

What we need to do is make resources for people with disabilities, the same kind of search approach and availability as we would have for anything we needed.

What is so exciting is to see, it's always the parents usually the moms who make a difference in the service system and in the community.

You can go all the way back to the beginning of the disability movement and see these passionate parents saying, no we are not going into an institution.

My child's gonna stay home with me.

We've come a long way, but we still have separate education.

And that I think sets the stage for separate everything.

- What above all else, do you wish that our audience the people that you see all throughout Kansas City as you go about in your life what do you wish they knew or understood or appreciated or respected about people with developmental disabilities?

- Well, I wish people would understand and respected that people with disabilities like me are real people and we have real feelings, but more often than not our feelings get pushed aside and people think that we don't know anything or we're just gonna sit in a little chair or we're just gonna just sit there.

But that's not true.

But a lot of people think that because a lot of people has told them, you're not gonna do nothing.

You're not gonna be anything.

You're not usually gonna sit there.

And I've been told that several times by many different people.

But I'm determined to teach people that I can be more than when people actually see.

- To say I'm so deeply and overwhelmingly blessed to have you all here.

I appreciate the work that you're doing.

Thank you so much.

And Shacara to you.

Thank you for sharing your story with us.

You've been hearing from Halie Bishop, Employment Program Manager at The Whole Person, Amanda George at Developmental Disability Services of Jackson County EITAS, Kim Riley, founder of the Transition Academy, Evan Dean associate Director of KU Center on Developmental Disabilities and Shacara Pearson.

You can find additional reporting on transition resources for people with developmental disabilities at our website, flatlandshow.org.

But please join us too for "Flatland Follow Up" on Instagram @FlatlandKC.

It's a live streaming discussion where we invite anyone to come and join the conversation as we talk more about this important issue.

This has been "Flatland in Focus."

I'm D. Rashaan Gilmore.

And as always, thank you for the pleasure of your time.

- [Announcer] "Flatland" is brought to you in part through the generous support of AARP, the Health Forward Foundation, and RSM.

(upbeat music)