February 2003 Policy Brief
University of Kansas Department of Health Policy and Management
Number 2, February 2003
People with disabilities share their early experiences
Working Healthy is now in its seventh month of operation. In this issue, we
share findings from discussions with eight early enrollees. They offered
their opinions, talked about changes in their lives since enrolling, and
also touched on other issues that affect their employment efforts. The participants
in the interviews represent a variety of disability types, educational levels,
race, age, geographic locations, and gender. The group also included both
enrollees who pay a premium and those who do not.
How's Working Healthy Working?
All of the participants feel that Working Healthy is a worthwhile addition
to their lives:
“
I can’t say enough about it… For people with disabilities who choose
to work it’s just a great program.”
They also expressed their deep convictions about the value of work and the
responsibility to be productive:
“
We are trying to better our life. We don’t want to be labeled as living
on SRS or things like that. We don’t want to be a sponge and soak on
other people. We want to provide for ourselves. We want to be a regular person
in society. We don’t want to be on AFDC and things like that. We want
to be a working member of society and living our normal life and living the
American dream.”
Two participants expressed concern about the “marriage penalty” inherent
to the Working Healthy program. In one instance, the spouse of a Working Healthy
participant lost his medical card due to his wife’s earnings. In the
other instance, a current Working Healthy participant who is in a long-term
relationship expressed concern about getting married because doing so might
make her ineligible for the program.
How participants' lives have changed
Only one person in the interview group had increased her earnings subsequent
to enrolling in Working Healthy. One person had been laid off in October,
but was very pleased that Working Healthy allows for a six-month extension
of eligibility in such situations. All of the interviewees were glad to have
more disposable income due to the loss of their spenddowns. Many reported
being able to pay off outstanding pharmacy bills or make purchases that increased
their ability to work, such as fixing a car or buying a used one. Most of
the participants with mental illness also reported they were better able
to get the medications they need because they had often gone without their
medications due to their spenddowns:
“
I really thought the spend down process was just ridiculous. I had this huge
amount and actually, if I didn’t work in a pharmacy where my boss would
let me charge all the medicines and everything until I came up with the spenddown
amount, there was no way I could make this work, because it was just a ridiculous
situation and having it just kind of balloon on me every six months seemed
really crazy. But …when you said you could just make a [premium] payment … it
seemed so logical.”
How did participants find their jobs?
Working Healthy was established under
the Ticket to Work/Work Incentives Improvement Act. Part of that legislation
provides “tickets” or
vouchers to people with disabilities to use in obtaining employment services.
When asked
how they had found their current jobs, five of the interviewees indicated they
had responded to newspaper ads or to word of mouth information. Of the remaining
three, two received assistance finding their jobs through their community mental
health centers and one had found his job through the local community developmental
disability organization.
Barriers to employment
Many of the people interviewed had jobs that are not commensurate with their
educational level or experience. One, with a Master’s degree and teaching
experience, is currently working from home typing text for cookbooks. Given
her typing speed, she makes about $2.30 per hour. Another interviewee with
a bachelor’s degree in education and many years of teaching experience
is currently working in food service.
The participants cited numerous barriers to work, or to better work. Several
reported having experienced overt disability-related discrimination by potential
or former employers. One had been told that she would not be hired because
she would cause the employer’s health insurance premiums to increase
and one had been fired when she had to be hospitalized. Another stated that
employers “see
the disability first” and do not consider a person’s ability to
do the job.
Although many interviewees expressed the belief that their disabilities were
the biggest barrier to work, further discussion indicated that other factors
were equally, if not more, important. Foremost among these was advice from
various professionals including physicians and case managers. These service
providers had often discouraged the interview participants from getting jobs
or increasing employment levels due to the often misguided belief that doing
so would cause a loss of benefits or automatically result in a worsening of
their patient’s or client’s condition.
Some of the implications from this research are that doctors and other professionals
need to learn more about work incentive programs for people with disabilities
and also about the availability of job accommodations that can make working
a reasonable and even healthy goal for most people with disabilities. In addition,
people with disabilities want to work and Working Healthy is one way to support
that endeavor.
IN A NUTSHELL:
Overall impressions about Working Healthy from early enrollees
• Working Healthy is a good idea and is appreciated
• The apparent marriage penalty is a real concern to some
• Many enrollees are now better able to get the medications they need
•
Participants have more disposable income to put back into the state’s
economy
• Most of the interviewees found their jobs independently, usually by responding
to a newspaper advertisement
• At least some of the participants are working in jobs well below their
educational level or abilities.
• Several had experienced overt disability-related discrimination by potential
or former employers
• In many cases, medical or other service providers had discouraged participants
from increasing their work efforts, seemingly based on outdated perceptions
about work incentive programs and job accommodations
This Policy Brief is published by the KU-CRL Division of Adult Studies in cooperation with the Kansas Division of Health Policy and Finance. The Policy Brief and other information regarding the Working Healthy program can be found online at http://www.workinghealthy.org
Additional copies and copies in alternate formats are available upon request by calling
1-800-449-1439 or emailing pixie@ku.edu
KU Research Team
Jean P. Hall, Ph.D., Principal Investigator
Noelle K. Kurth, M.S., Project Coordinator
Division of Health Policy and Finance
Mary Ellen O'Brien Wright, Working Healthy Program Director
Nancy Scott, Benefits Specialist Team Leader