Episode 25 Transcript

Published: Thursday December 14, 2023

Bill Krebs: Speaking Up on Intellectual Disability

Advocacy in the Evolving Landscape of Self-Direction


Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week we will explore topics like confidence, ambition, resilience and finding success against all odds. We are creating a collective community that believes that all things are possible for all people.

Open hearts. Clear paths. Let’s go.

Welcome back to Pushing Forward with Alycia, I am Alycia Anderson and we have an amazing guest today, his name is Bill Krebs. He has spent 26 years fighting for the rights of people with intellectual disabilities. Bill and I met at a conference this year and it is my absolute pleasure to grow our friendship. Bill, thank you so much for spending a little time with me today. Welcome to pushing forward.

Bill Krebs: Thank you. Thank you for having me here.

Alycia Anderson: Thrilled. So I just.. I just shared a little bit about who you are. What did I miss? Did I miss any nuggets that we need to share with the audience about who you are as an advocate?

Bill Krebs: Well, my name is Bill Krebs I live in Philadelphia. I work for Keystone Human Services, as the advocacy coordinator here in Pennsylvania. I take care of Pennsylvania, New Jersey, Delaware, Connecticut. So when are people ask… need help, who do they call? Me, and I try to problem solve it with them because I’m a person with a disability just like them.

Alycia Anderson: Can you speak to a little bit about your disability, whatever you’re comfortable with?

Bill Krebs: Yes. When I was a kid, I didn’t say much. I always kept to myself even when I was in kindergarten, I isolated myself. I didn’t play with the regular kids.

So when you don’t do these things and you don’t intertwine, they think somethings wrong with you. So, they told my parents, could he stay back for another year? So… and this is kindergarten, you know, we didn’t… and the rights to education was coming along pretty soon.

So my parents came home and they said the school wants to keep you for another year in kindergarten. Will you stay back for another year? I said to them, wait, let me think about it. And I said, yeah.

You know, why I stayed back? Because, when you’re in first grade you get homework. You don’t get a chance to take naps, and the best part was the free milk and cookies! I wanted free milk and cookies, so I stayed back for another year.

So when I was in regular classes in first grade, I couldn’t keep up with the regular kids. I always isolated myself again. I sat in the back so the teacher would never call on you. You raise your hand the teacher would call on you. I never did that stuff, so I stayed back for another year.

Then I got bumped up again to the second grade. Same thing they told my parents he’ll grow out of it. You know kids, he’s shy. He don’t know better. It went on to about fifth grade, where they finally got a chance to see what was going on.

The rights of education came along for special education kids who had a problem. Back in those days everybody was labeled being ADHD. So what did they do… put them on Ritalin. I wasn’t hyper, so I couldn’t be put on Ritalin. I just didn’t keep up with the regular kids.

So when they tested me, they took my parents and told me they’re gonna… they’re gonna get a guy who’s gonna ask you questions. So when he tested me, he did all these validations and he came out with it all. He said that my parents in the school he has developmental delays, he has the intellectual disabilities, but that wasn’t the word… it was called retarded.

You know, he has an IQ of 68. He will not add up to anything. You better put him away somewhere cause he’s a risk factor. He’ll be lost. He won’t understand things. Didn’t know what they were talking about. And that’s how I got into the system that we are in today. For my label, you know…, but you label jars, not people.

Alycia Anderson: Oh, I love that… you label jars, not people.

And you know, I think that’s a thing from a child’s perspective. It happened to me too, where the decisions that are being made for us in school are being led by nothing but unknowns and assumptions. And it really can’t dictate so much in your path.

Yeah. So thank you for sharing a little bit about your background. I think it’s really important to understand where you’re coming from and your perspective.

You do a lot of work around self advocacy in the intellectual disability community. Can you define what the term self advocacy means within your community?

Bill Krebs: In the intellectual disability community, it’s only for people who are labeled with intellectual disability, being self advocates.

We do not label people with autism being that way, because when they’re autistic, when they get high functional, they come to be Asperger’s. People like us who have intellectual disabilities were high functional. We don’t go nowhere, we become troublemakers because we know the system pretty good, and we want to help other people like yourself to understand what goes on.

We don’t label people with mental health being, you know, being self advocates. They have peer specialists.

People with intellectual disabilities don’t have peer specialists, but we want peer specialists. We want to have friends to, but a label holds you back from what you want to do.

Alycia Anderson: And is it fair to say that it means that you’re fighting for the power to control your own destiny, that you are standing up and advocating to be counted and to receive services?

Bill Krebs: It doesn’t work that way. It doesn’t! Because if you live a self-determined life, they say it’s all about you.

The systems are like a limousine driver. You’re the backseat driver. You pick up the phone, you tell the driver where you want to go, and you drive this system. The system does not allow you to do that.

Now we have a thing going on, state to state, I want to tell you guys a little secret, it’s called directing your own services, you take the money out of the providers hand and you do what you want with it. Like me, I have a budget. My broker tells me what I’m doing. Mine’s all transportation to get me to work where I’m at today, you know, to get me to conferences where I need to go. It takes me to wherever I need. I hired a guy, who’s my worker or woman… whoever goes… whoever wins the bid. It pays my pass for the buses in the city.

That I need to go, and if I can’t get there by bus, I have an allowance for Uber. So Uber takes me there. So don’t forget you could self direct it. Don’t let the agency say you can’t because you could have a surrogate someone helping you, a family member, or a friend to help you direct what you need.

Alycia Anderson: I think it’s really powerful the way that you use your voice and the work that you’re doing.

Bill Krebs: I think every self advocate, you know or person with a disability, should have a mentor, somebody they can use as a role model so they know what’s going on to guide them and show them. Mine wasn’t a person with a disability. It was a person who worked in the system who saw that potential in me, who saw my ability, not my disability. I ran into this guy at a conference and he had this neat poster board with this other guy who had a disability on it.

And I came up to him and I asked him what he does. He said I do family living and I do employment.

He said, “So do you work?” He asked me, and I said no, I came from a day program. I… I’m in the workshop, you know, they don’t believe that I could work one day.

He said that’s impossible. So next thing I know, he came to my self advocacy group and I was volunteer at the office. My other self advocates went into this room boardroom to talk to him. He had his boss and they were talking about neglect and abuse for people with disabilities in group homes… when nobody says anything.

And he said what is this guy standing out here? He’s gotta come in here too. So I came into the office. Came into the boardroom. He said, “I want your input. What do you think?” And then he was really impressed with me, he took me under his wings. You know and that’s where I learned about the system from somebody else who took me.

He said, “Bill, I do employment. I know you’re in the workshop. Tell me about your experience. If you’re gonna go with me. We’re going to go to Virginia Commonwealth University.” I said, “Why?” He said they’re doing whip it, counselors. What we call them today is benefit counselors. Every state has them people just really don’t know about them. So he said we’re gonna start it in Pennsylvania. I want you to go with me, and he told the deputy. He said, “Bill… is gonna go.” He said, “Bill will never learn.” He said, “Yes, he is. I’m taking him under my wing.”

So every time he went to an event he would take me with him, because he knew I wanted to learn more.

And our minds are like sponges. You’re hard headed in the beginning. Knowledge is water. You stick to sponge in the water. You suck up what you can need. You trickle out what you don’t need, and you stay firm so you don’t get burned. And you pass it on to the next person. And that’s what I learned from this guy.

And he invited me to Thanksgiving to his family, and I wasn’t even family. I had my own family, but he said I would like you to come. He became more than a friend he became a best friend. Even the day he retired, he still calls me and asked me what’s going? How’s work coming along? Do you need any help? Because he was the one in our state with this other guy who made the waiver what it was before it changed over back in the days.

Alycia Anderson: Any of our listeners out there that sees something and someone else and give them an opportunity, even if they don’t see it in themselves, so that’s powerful. From the employment standpoint, since we since you brought up the topic, what does employment look like? What are the opportunities out there or the lack there of for people with intellectual disabilities? Like what is that environment like today?

Bill Krebs: It’s really hard because we always get to the same old job. We don’t get a chance really to explore what we really want to do and when we do it, it’s called customized employment where you take your ideal and you bring it to the table and say, hey, I have XYZ can you help me with ABC and then they look into it and you match each other as a partner.

I used to put screws and nuts in a bag for three years, and used to get a half a cent [a bag]. While the supervisors pay used to get $0.05 a bag and then he got a quarter and administration got $0.50 and that bag that we made went to the Dollar General store where they sold it for $1.59. So everybody was making money except for people with disabilities.

In the next seven years, like I said. They taught me how to dress myself, how to read a bus schedule, how to punch clock, and I really punched the clock because they had those time clocks that you put the card in, but I didn’t know you put the card in. I came up and punched the clock every day and I said to him, what do I have to sign in? When do we check in here? You see me? My peers see me. We don’t have to hit it. Then I realized after seven years doing that. Put screws and nuts in the bag. Who’s screwing who and who’s nuts were doing it.

Because people with disabilities, this was employment for them. What did we do with as employment? We worked at your local supermarkets pushing shopping carts, stocking shelves, being a bagger, being American greeter at Walmart, being a local janitor. Like janitor work, because that’s all they did.

But if I was a person on welfare to work, they had a better choice of working and still keeping their benefits. People with disabilities if they start working, if they didn’t know what was going on, they will lose their benefits, lose their waiver.

Alycia Anderson: This is a perfect time to take a quick break. You are listening to Pushing Forward with Alycia and we will be right back.


Alycia Anderson: Welcome back to Pushing Forward with Alycia. I am Alycia Anderson and we have an amazing guest today. His name is Bill Krebs. He has spent 26 years fighting for the rights of people with intellectual disabilities.

Yeah, and I think that this is a really important point to touch on as well is #1 the subpar payment and roles that are offered for people with disabilities, specifically intellectual disabilities. And also the big issue that’s out there of if you need services from the state or government to obtain your medical care and the things that you need to make your way through each day with the disability you can only make a certain amount of money before you lose that. Can you talk a little bit about that as well?

Bill Krebs: Yeah. So what you do is before you go to work, think over what you really want to do and then tell your employment specialist that you need a benefit counselor to go over how much you can make. So you don’t jeopardize everything like you’ve said.

You may have housing, you may lose your Section 8. You may lose your food stamps. Because you make too much money now. It’s really not fair for people with disabilities.

You know, we want to work. We want to be like everybody else, but nobody gives you the opportunity to learn and grow and really, to prosper and really work and maintain something.

You take people who have the same sex marriage, they get married. They keep their benefits. People down on SSI, get married, they lose their benefits, and it’s the end of their one check.

So, What? What’s the difference? Don’t I want everything everybody else has?

Then we depend on the system. We don’t have enough to feed us. We go to food stamp. We don’t have enough to pay for our medical. We get medical assistance. That’s all people we get when we’re on SSI. You know, for being disabled, you know? But do we really want that? Do we want? That that we want to be like everybody else, but we don’t have that opportunity.

Alycia Anderson: Totally. Can you talk a little bit about the story of you accepting this job that you have currently, because I love this story about. So when you went to go work for your organization and…

Bill Krebs: Well, I’ve been here. I’ve been here… approximately for five years. I saw the director of this organization before he stepped down and retired. We did a documentary together called I Go Home based on this institution called Pennhurst, where people put in and he used to work there.

I was never put in an institution, but when they ask me, and they interviewed me. I said, yeah, I was in an institution, my mother was the institution. They’re like institutions. They tell you what to do. They tell you who you can have friends, who you can’t have friends, what time you have to come in, what time you can get out, what food you can eat, what food you can’t, what you can dress up.

So when I came to this organization I liked the Director. He was always upbeat with his employees. He was always smiling and he always had a cheerful mix and I came up to him one day and said, “I wanna work for you.” He said, “What!?!”

“I wanna work for you,” I said, “Joe, show me your hand. How many people with intellectual disabilities work for your organization?” And he couldn’t put up his hand. I said, “Ohh. They must have cut off your hands because you have nobody with disabilities working for you.”

And he was really offended, but he said, “if you want this job Bill, I’ll tell you what. You come up here. I just posted it, an advocacy position. You want it?”

And then I had to travel 2 ½ hours. I don’t drive, so I had to take a train. Got an Uber. Came to his office.

His secretary said, “What are you doing here, Bill?”

I said, “I’m here to see, you know…, You know who.”

She said, “Let me check his schedule, see if he’s busy now?” She said, “Forget it. Just go ahead in there. I know who you are, Bill. Don’t worry. If he yells, he’ll yell at me for letting you come in…” And he came in and he said, “Bill, what are you doing?”

“I just saw you at the conference yesterday,” and I said, “I’m here for that job.”

He said, “You are?”

He said that, “I got good news and bad news. It’s good news that you could take this position. Bad news is that I’m retired so I don’t know if you can take this position.” He said this as he picked up the phone. He called this other guy who came in, and he said “What’s Bill Krebb’s doing here?”

He said, “Ohh I invited him. I want Bill to take this position.”

He said, “What happens if we don’t take this position for him. Then you won’t have a job or my position. Because when I move out, I’m making sure you take my position. But if you don’t show what I want to do, then you don’t have this position.”

He said, “Hold on. Let me call my assistant who’s taking over my position.” So he called up and this lady walked and said, “Bill Krebs? What are we here with this guy? Are we all going out to eat?”

They said, “No we’re gonna hire Bill Krebs as the self advocacy coordinator.”

Oh my God, my hair stood up on my chest and when they said self advocate because I’m like Oh my God, they’re labeling me with a disability. I don’t want to be the self advocacy coordinator. I wanna be the advocacy coordinator of this organization because if you ask the professional who works around me, they won’t know I have a disability.

So guess what… she said, “Bill.” She walked out with me, she said. “Can you come up here in a week? Well, I’ll I wanna do my clinical director to interview you for this position and if it works out, one of them will pick you.”

So then I came up. I didn’t have the money. They sponsored me to come up. Because remember, I didn’t I was out of the workshop, so I didn’t have no little income. And people with disabilities who are on flexible income that really doesn’t flex them.

So I went up there and there was five clinical directors. They sat around the table. We went to a buffet and that’s what I wanted to eat. I told them I want to go to buffet cause the buffet is like people. It’s a variety of spices in life and you can pick and choose what you want in life, like the food.

So they all looked at me. They asked me a question for 10 minutes. And I had to give them a rebuttal in 5 minutes so my answer was and I tell people with disabilities they are like speed dating. You sit around with a stranger and they ask you questions about yourself and you gotta answer them. And at the end of this speed dating they gotta pick if they want to go out on a date with you or not.

But this was employment. This wasn’t like I said, like speed dating I knew, it felt like it, so they all sat around, they couldn’t figure out who was gonna… this one lady who’s my supervisor at the time. She’s retired now. She said, “I’ll take on Bill. He can come working on my office. I’ll teach him everything you know.”

And I never looked back.

Alycia Anderson: When we were talking about your story, you said it took four raises and then you.

Bill Krebs: Yeah, I’ve been here for five years and got four different raises. But you know what it is? It’s the cost of living doesn’t affect your check for people with disabilities who need more help? It would burn your check out. You know, if you need more support.

You know, thank goodness I have a waiver.

Alycia Anderson: Can you talk a little bit about what the waiver is and what those services provide for you?

Bill Krebs: A waiver is you waive your rights to be put away in an institution, only people with intellectual disabilities and autism are entitled.

Every state has a state waiver. It depends where you’re going.

Like my waiver, my waiver at one time was run by the provider agency like I told you earlier, I direct my services and my services for my outcome is employment to keep my job. You know, it helps me with my transportation. Like I tell these guys out there.

Every state is built differently and they do different things with their waiver. What, one state doesn’t do. We don’t do it, you know, and it’s and my dream is to have a universal waiver. Like I live in Philadelphia. If I moved to, Pittsburgh, my services would still be rendered. But if I move across the borderline to Ohio my services won’t render.

Alycia Anderson: We need, I mean there’s. Such a systemic issue with…

Bill Krebs: Well, we have universal healthcare, Obamacare that we would call it, right that you could put ability anywhere in anywhere in the United States. So why can’t we put ability, in our waiver? It’s Federal Money… only the states gotta agree with it.

Alycia Anderson: In your role at Keystone, tell me some of that self advocacy work that you’re doing for within your organization?

Bill Krebs: Well, we started…, we started two self advocacy groups, one down here in Delaware where I’m at based at and one in Pennsylvania. The one in Delaware is called Speak Up Delaware. So I come in as the advisor from that these people came down from Sunbury, PA, and they said they wanted to see what it was like to have a self advocacy group and they invited me to come up there and start one with them.

Alycia Anderson: You have just such a light. You are such a positive, beautiful person. I just. I love it. You make me smile constantly. I know you’ve been in front of some pretty famous people on the speaking tour. You’ve been in front of senator, who’s the most famous person? That you’ve met in this work that you’re doing?

Bill Krebs: There must have been two people, one was Barrack Obama. I was invited to come down to Washington, DC for the Developmental Disability Council. But my biggest thrill was when I went to Indianapolis, IN for the Governors affair for people with disabilities, presenting my Beyond Tokenism.

I ran into Congressman Hawkins, who signed the ADA. I wanted to see this guy before I died and I saw this guy and I took a picture with him and I asked him could I can I take a picture with you? So I can show my friends that, hey, I wasn’t making it up look at what I’m doing.

Alycia Anderson: It’s so impressive. I think that the work that you’ve done in legislation and getting the advocacy out so broad and so far has been really powerful and congratulations on all of that success and you just keep doing it because the work that you’re doing is… It’s just so needed. It’s so impactful and it needs to be more visible, right?

Bill Krebs: Well, we hope the next generations will get it out there because when we’re gone, who’s going to take over for us if we don’t teach them in high school, they teach people the history of disability to make it is because we make histories of everything else, but they forget about people who made it possible for other people like myself to pass the torch.

Because when that torch is out, what’s next?

Alycia Anderson: 100% so to wrap up, I always ask our guests, I’m going to put you on the spot. I ask, I ask our guests if they could give us a pushing forward moment, a little inspiration, a mantra. Do you have any little Nuggets?

Bill Krebs: I always say, believe in yourself because I believe in you.

Anything’s possible. It’s possible.

Just look at yourself. Now look at me.

Remember, you’re not a Doubting Thomas.

Your name was not Doubting and your last name is not Thomas.

So do anything’s possible.

Possible, just do it.

Heck, with whether they believe in you or not.

Believe in yourself.

Because that’s the way to go.

Alycia Anderson: I love it.

Well, thank you so much for spending time with me today, we’re going to put your information in the show notes so everybody can follow you, look at all of your YouTube videos, all of your speeches, and contact you for bookings.

I’m so happy we’re friends. You and I are going to be in contact working together from here on until forever. I know it. Thank you so much for your valuable time today and all of your expertise Bill.

And thank you to our listeners out there for joining this conversation and for supporting this podcast and for subscribing and for showing up each and every week.

This is Pushing Forward with Alycia and that is how we roll on this podcast.