SPECIAL ISSUE

May, 2009

WORK Participants: Earning, Independent and Thriving

By Noelle K. Kurth, M.S., KU Research & Evaluation Team



In July 2007, the Kansas Medicaid Buy-In, Working Healthy, began offering personal assistance services (PAS) to enrollees with traumatic brain injuries, physical disabilities and developmental disabilities. The services are available through a state plan amendment, known as Work Opportunities Reward Kansans (WORK). For Working Healthy enrollees who qualify, WORK can provide a package of services that includes assessments, PAS, independent living counseling and assistive technology services. Further, WORK participants are able to direct their own services by hiring their own attendants and either serving as their own fiscal manager to pay for their services or choosing someone to do so on their behalf. As of March 2009, 102 Working Healthy enrollees are participating in WORK. 

In March, evaluation staff traveled to Hays, Lucas and Norton, Kansas to speak with three individuals participating in the WORK program. We wanted to know how their lives have been affected by being enrolled in Working Healthy and having PAS services through WORK. 

Brent Orton lives in Norton, Kansas and works part-time at the local hospital. Brent is the first to tell you that he has been faced with some debilitating challenges in this life: “After cancer, I ended up with a stroke. I’ve lost usage on the left side of my body…then I had a five-way heart bypass…all I would do is I’d get up, fix me something and it was the same thing almost every meal and it was not healthy, not diabetic at all. But it was all I could do to get up and walk and fix it for a minute or so and sit back down…My back starts hurting if I stand very long…” Brent’s diabetes, heart problems and cancer recovery contributed to a general malaise he felt toward life and his home. After spending most of his life working as a truck driver, Brent had to face new circumstances in which life looked completely different. For a year, Brent was living in a home that wasn’t safe for him and eating a diet that could potentially kill him and he didn’t care, “I had a recliner and I’d sleep in it most of the time at night. It was just like I didn’t care. I was depressed. And in the summer I would just sit there and sweat.” 

After about a year of living depressed and in poor health, Brent heard about the Working Healthy program and thought that if he could work a few hours and get out of the house it might be good for him. He inquired about a job at the place he had spent the most time in the past several years – the local hospital. A hospital administrator found a job for him in the laundry department. Brent would be able to sit when he needed to as he washed and folded towels and he’d be able to keep up with the work they had on a part-time basis. Then, very shortly after that, Brent found out about WORK and that he could hire his own personal attendant to help him at home. 

Over the course of the past 6 months, Brent’s life has changed due to going back to work and having found Martha, his personal attendant. While before he never left his house and lived in conditions that he admitted were depressing and isolating, now he is working, making money, getting out in his community and his health has improved. Due to his pain and limited mobility, Brent’s eating habits were not consistent with a healthy, diabetic diet, but Martha and the self-directed services available through WORK have helped turn his diet and health around. Martha cooks diabetic-friendly, low sodium meals and freezes them for Brent and, with the purchase of a microwave through WORK, he is now able to reheat these meals for himself. As Martha explains, “We got these little containers which are about a serving size and we’ve labeled them with dots so that he can read them. We have a chart on the refrigerator door, so he can just pull out yellow, I think that would be chili, and he can just heat it up in the microwave so he doesn’t have to stand to cook, but yet he’s getting a variety of food. It’s also a very inexpensive way to cook.” With this new diet Brent has lost weight, consequently improving his mobility and his doctors have told him his diabetes and heart are in the best shape they have been in years. 

Part-time employment has also helped turn things around for him. Getting out of the house, making money and interacting with others has changed his perspective. He no longer feels like staying inside all the time. Martha assists him to go out in the community and pay bills and buy groceries on his own, where in the past he would have just asked his sister to do it for him. Most recently, Brent has decided to become a part of a mentor and respite program for kids who stay at the local in-patient mental health facility. And finally, he knows he is needed somewhere – his job. When the weather was bad and snow piled up he was unable to get out of the house and called in absent to work, or tried. His supervisor however, has on numerous occasions sent someone to Brent’s home in order to plow him out and get him to work. Brent’s words, “The WORK program has given me a whole new outlook on life, a whole new lease on life.” 



Scotty Schneider is a rancher from Hays, Kansas. He has acreage and a cow/calf operation southwest of Hays. Scotty has worked the ranch for many years, as well as working as a high school teacher, coach, case manager and contractor. Scotty, you could say, is a “jack of all trades.” There probably isn’t much of anything Scotty doesn’t know how to do. So when an unexpected and unknown health condition affected Scotty, his world was thrown out of balance for a little while – but not for long. Having a health condition that affected his seeing, hearing, mobility, and speech and baffled many doctors took a toll on Scotty and his family. They spent a lot of time going to doctors and having surgeries and procedures. During the worst of it, Scotty was not working, but he isn’t one to stay down for long and his family needed the income. While he wasn’t able to continue coaching or teaching, the ranch and farmland were still there for him. 

With the coordinated efforts of Working Healthy, Vocational Rehabilitation (VR), the Kansas Assistive Technology Cooperative (KATCO) and the AgrAbility program, Scotty has been able to get back to work on his ranch. In Scotty’s words, “without the Working Healthy program that let me keep farming, we’d all be on welfare probably.” Through Working Healthy and the WORK program Scotty has been able to get the help he needs at home, “I tried to do as much as I could. My wife would have to come in [from work]. My daughter would come home and help. That kind of stuff. They basically donated their time before the WORK program.” Scotty’s VR counselor and Working Healthy Benefits Specialist were able to work together to determine what supports he needed on the ranch and KATCO and the AgrAbility program were able to assist in getting him assistive technology, such as a four-wheeler and automatic barn doors, that enable him to work on the ranch with more ease. These various support programs and individuals coordinating their efforts as well as Scotty having the PAS services he needs through WORK have allowed him to get back to the work he loves and contribute to his family financially. Scotty does, however, worry about the longevity of programs like WORK: “This program has really helped me. It’s got my self-esteem building back up again. It’s putting hope back where before it was kind of bouncing back and forth. So I’ve got nothing but praise for the Working Healthy WORK program. I just wish more people knew about it. It bothers me a little with the economy like it is…that this is one of the programs that gets cut. How will that affect me down the road? You know back East I think the opportunities are a little more available with more people and bigger cities. Out here they think its no man’s land…We kind of get forgotten about.”

What Is KATCO? 

The Kansas Assistive Technology Cooperative is a consumer run organization that helps people with disabilities gain economic and functional independence by coordinating and providing financing for the purchase of assistive technology (AT) equipment and services.  

What Is AgrAbility? 

AgrAbility is a national project created to assist people with disabilities employed in agriculture by linking Extension Services at land-grant universities with disability service organizations to provide practical education and assistance that promotes independence in agricultural production and rural living.

Kurt Bretz lives in Lucas, Kansas (home of the Garden of Eden) and works full-time at a local hay distribution business. Kurt is a young man who lives with his happy family full of jokesters. He enjoys his job, especially working with one type of hay in particular – Timothy. In Kurt’s words, “I love my job. I do bagging and I work with Gene [his boss] in the weighing, shredding and cleaning.” Kurt has lived his life with a disability that in school, community and work hasn’t slowed him down for a moment. His friends and neighbors cite him as a vital member of the Lucas community. 

Kurt has worked at a variety of jobs in food service and grocery over the years, but enjoys the job he has bagging hay the best. Kurt comes home most days for lunch. Before being able to access PAS through WORK, Kurt’s mother would either have to leave her job or his grandmother would donate her time to drive Kurt and assist him with his personal needs during the lunch hour and sometimes after work. In the words of Kurt’s mother, “Before we were asking her [grandmother] to do it and she wasn’t getting anything for it and she’s just on Social Security. So now, so she can get paid for what she does. She picks him up from work when I’m working so I wouldn’t have to take off work to go get him. She just goes and gets him and she fixes his meals.” 

Working a full-time job keeps Kurt busy, but he is active in the community as well. He enjoys going to the movies, camping and boating on nearby Wilson Lake, playing video games with friends from work, and writing about his favorite professional wrestlers. Mostly though, Kurt enjoys making and spending his hard-earned money. He doesn’t mind paying his monthly premium for Working Healthy/WORK as long as he is able to one day save enough to buy that red boat he has his eye on. 

While these are simply three examples of individuals living in rural Kansas whose lives have changed for the better due in large part to the services and support they received and continue to receive through Working Healthy and WORK, others are out there living in all corners of Kansas. They work in all variety of jobs and contribute to their communities in countless ways. We hear their stories. We know their hard work and the hard work of the many people who helped make these programs available was very worthwhile. 

To Whom It May Concern, 



First, everyone who has had a hand in developing the WORK Program and for those who have spent many hours traveling, promoting, assessing, and signing people up to receive the benefits deserves a gold medal, like the Olympians. 

Most everyone wants to become a productive contributing citizen in America. This becomes even more true when the citizen has a disability. This is where my adventure begins. I graduated from college and weeks later I had a job doing what I loved most - assisting people to find the resources they needed in their communities. What I loved even more was becoming a productive contributing citizen. I was paying taxes. I would say to people, “I have a job and I pay taxes.” I felt very proud that I could give back and pay into a system for the future. 

There became a point in my life where I wanted to be closer to my family, so I moved back to my hometown. I was able to get a very similar job and buy another house. So, I worked another four years. Still feeling productive and contributing to society. Then it happened just like it has to millions of other people, I unexpectedly became unemployed. I sat around for 

days thinking, “Ok God, no this is not the part that I wanted to experience like the rest of the world.” Boy, did I get a wake up call. For two to three years I slowly began to try to take everything in as a learning experience. I was now on the “other side.” I no longer had insurance. Instead, I had “pre-existing conditions,” and if I did work I could put at risk the benefits I did have. I was very depressed. Of course, I no longer felt like I was a productive, contributing citizen, but some days were better than others. 

As the months went by, I just kept telling myself that God has a plan for me. One morning the telephone rang, and when I answered it the voice on the other end said, “Do you want to come work for me at the durable medical equipment store?” I had a part time job. Boy, if only I could have danced a jig! I had a part time job. Yipeeeeeeee! SSA said that as long as I did not work over a certain amount my benefits would be fine. Did I feel secure with that answer? No, but I went to work with a prayer. 

When I received my first raise I cried because I did not want it. I knew that there was a possibility that I would be making too much money. My SSDI benefits could be in jeopardy which meant my home could be also. I had to choose not to work so many hours, not even part time. 

Angels come in all different shapes and sizes. Not all of them are women. Some of them are men who are balding on top and you can’t always see their wings, BUT they have them. They really do! He introduces himself. “Have you ever heard of WORK/Working Healthy?” He began to explain the two programs and several times I stopped him and said, “Not possible. I’ve never been eligible for anything and especially not Medicaid, there has to be a catch somewhere.” He just kept reassuring me that there was a program that could help. The woman that had been assisting me to stay independent for the last six years for free could now be paid and I didn’t have to choose between medicine, groceries, and paying the bills. 

Finally, I have made it through my first Medicaid review with the support of my angels. I am beginning to see the light at the end of the tunnel financially and my home is more secure than it has been in a long time. Most importantly, I am once again a productive contributing citizen who is paying for part of her services. And believe it or not I survived another career change and I love every minute of every day. 

Again, thank you for this program and for the people that ran many miles to make it a reality. You are the Olympians. 

Sincerely,

Michelle A. Campbell

Working Healthy is published quarterly by the University of Kansas CRL, Division of Adult Studies and the Kansas Health Policy Authority. Additional copies and copies in alternate formats are available upon request by writing the University of Kansas Division of Adult Studies, Attn: Noelle, 1122 West Campus Rd.. JRP Hall Rm. 517, Lawrence, KS 66045, by phone 785-864-7085, by emailing: pixie@ku.edu

KU Research Team:

Jean P. Hall, Principal Investigator

Michael Fox, Co-Principal Investigator

Noelle K. Kurth, Project Coordinator

Shawna Carroll & Emily Fall, Graduate Research Assistants

Emily Tonsfeldt, Student Assistant

Kansas Health Policy Authority:

Mary Ellen O'Brien Wright, Senior Manager

Nancy Scott, Program Manager

Daniel Lassley, Employment Consultant

Many people with disabilities want to work but worry that doing so could jeopardize their vital health and long term care coverage. Working Healthy offers people with disabilities who are working or interested in working the opportunity to get or keep Medicaid coverage while on the job. Through Working Healthy people can earn more, save more, achieve their career goals, and still maintain their health coverage.

Working Healthy is a Medicaid program. To qualify for this program, a person must:

• Have a disability determined by Social Security;
• Be no younger than 16 and no older than 64;
• Be employed;
• Have total income of less than 300% of the Federal Poverty Level;
• Not be receiving Home and Community Based Services;
• Not be living in a nursing facility; and
• Have resources that are less than $15,000.