"To Work or Not to Work"
that is a question being asked by
many individuals with disabilities and their family members as they begin to
think about going to work in their local communities. This fact sheet addresses
frequently asked questions by family members and provides answers to dispel the
concerns. After reading this, it is hoped that family members will agree that
the answer to the question: "To Work or Not to Work" is "To Work!"
Question: I have been told that my son / daughter is not ready to
work in the community.
Answer: Customized employment eliminates the need for a person to
"get ready" to work. If your son / daughter wants to go to work, then it is
time for him / her to go. A key aspect to customizing employment is finding
work that matches your son's / daughter's interests and skills. Using this
approach, a personal agent or employment specialist works closely with a job
seeker to negotiate a specific position that uses the person's talents to match
the needs of a business. The goal is not just to locate any job, but a job
specifically negotiated that capitalizes on your son's / daughter's interests
and abilities.
Question: But, my son / daughter does not have the skills to meet the
demands of a real job and needs training.
Answer: Many people with significant disabilities do not transfer
skills learned in one setting such as a workshop to another such as a community
business. One of the reasons is that it is difficult to simulate the features
of a job in a setting that does not have coworkers and the demands of a real
workplace. For instance, your son / daughter may be in a training program to
learn how to work in an office. The participants in the program take turns
completing tasks such as sorting mail, delivering messages, and folding letters
and stuffing envelopes. However, typically position descriptions change from
business to business. The way that one office prepares and delivers mail can be
very different from another. The time spent learning the task in the training
program would be better spent in the actual workplace where your son / daughter
is employed.
Question: The workshop is a safe place, and I don't think my son /
daughter should be alone in a community job. He / she has never been without
the support of the agency's staff.
Answer: Looking for a "safe" place to work is also part of the
customized employment process. First, "safe" needs to be defined in
relationship to your son's / daughter's support needs. For example, a person
who has a history of walking out of any door at home or the workshop may have a
very different safety concern than the person who just lacks community based
experiences. In some instances a workplace that limits access to the outside or
machinery may be warranted. Another person may just need to have a little extra
support from a coworker.
Your safety concerns will be taken into consideration when negotiating
work. It is only natural for you to be concerned about your sons or daughter's
welfare. For example, part of the negotiations might include arranging for some
additional supervision or creating a job where your son / daughter works
alongside a coworker who is aware of the support need. Once again, an agent
would work closely with an employer to negotiate a job that minimizes your
son's / daughter's disability and provides the workplace supports necessary for
him / her to be successful.
Question: How would my son / daughter learn the skills in the
workplace?
Answer: Key to the negotiation process is the employer's
willingness to support whatever your son / daughter needs to become successful
at work. For example, sometimes a job applicant with a disability will need
more skills training than the employer is able to provide. In such a case, a
trainer sometimes called an employment specialist will go to work with the
individual and provide additional on-the-job training. Or perhaps, the person
needs to use an assistive technology device to get the job done like using a
reaching device to pull items off of a high shelf. Another, job applicant may
need a modification in a company's policy that would allow him / her to work a
flexible schedule. Workplace supports vary from individual to individual and
are tailored specifically to meet the needs of an individual in a customized
job. At the end of the process, when the deal is struck, the result is a custom
made job for your son / daughter.
Question: I don't know what kind of job my son / daughter would like.
Answer: A personal agent or employment specialist will spend time
getting to know your son / daughter as well as your family. For instance, an
employment specialist may spend time with him / her in the community doing
preferred leisure activities, talking with family members, meeting with friends
who know your son / daughter well, and so forth. The time will be spent
discovering his / her interests, abilities, and support needs.
Occasionally there still may be uncertainty about of what your son /
daughter might like to do. If this happens, several types of jobs will be
identified that appear to match your son / daughter's expressed work interests.
Then, he / she can have a brief work experience, perhaps 3 - 4 hours within
each job type, to more specifically identify his/her work preferences and
support needs. This information will be used to customize a job on your son's /
daughter's behalf.
Now prepared, the personal agent or employment specialist will begin to
identify potential places of employment in the local business community. You
may even be asked if you know employers in your network that would be willing
to support a person with a disability in the workplace. The agent will meet
with employers to learn more about the business and specific needs of the
company. Whenever an employer has some suitable opportunities that match your
son / daughter's specific interests and needs, the job negotiation process will
begin.
A good customized job individualizes the employment relationship between
employees and employers in ways that meet the needs of both. A proposal will be
prepared for the employer's consideration that will highlight your son's /
daughter's abilities and how he / she can bring value to the business. Once a
proposal has been made and both the job applicant and employer agree to the
proposal, a work start date will be set.
Question: How will my son / daughter get to work? The community
rehabilitation program provides door-to-door transportation service.
Answer: A critical aspect to customizing a job for your son /
daughter will be finding work opportunities at locations where transportation
will not present a barrier. Every situation is different. For example, some
people may travel to work using public transportation, while others, ride with
co-workers, take specialized transportation services, or walk. Part of getting
to know your son / daughter will be exploring various transportation options.
This information is vital to the strategic plan for customizing employment,
since it influences the scheduling requirements and the work location. For
instance, your son / daughter may have access to the public bus system, but
lack the skills needed to get to the bus stop and ride the bus alone. In this
case, a transportation trainer can teach your son / daughter how to get to and
from the job on the bus. Or, another option might be that the place of business
is on a friend's route to and from work. This could become part of the
employment negotiation process. For example, employment negotiations may center
a round a specific work schedule that would allow the person to work a schedule
that matches the friend's daily commute times.
If you are not comfortable with these options, staff can determine if
there is a specialized transportation service in the community that can offer
door-to-door service. Or, perhaps a college student or senior citizen would
like to earn extra money providing transportation. You can be assured that the
support needs of your son / daughter will be meet so that everyone feels
comfortable. He / she will not be left alone until the skills to get to and
from work independently have been demonstrated.
Question: But, that would cost extra money. I don't imagine that he /
she would be making very much anyway.
Answer: Your son / daughter would be making at least minimum wage
or more based on what other workers earn who are performing similar job duties.
The amount would be negotiated with the employer at the time of hire and again
during the course of employment for pay raises. In addition, if your son /
daughter is receiving social security benefits, he / she may be able to claim
an Impairment Related Work Expense (IRWE). This is a work incentive designed to
assist people with disabilities in paying for expenses that are needed to work.
Specialized transportation is one such expense. Basically, a person can deduct
the cost of services and items needed to work and reduce the amount of
countable income. When Social Security calculates how much a person will
receive in the monthly check, an IRWE allows him / her to keep more money than
if there were no work expenses. While he / she will not get all of the cost of
transportation covered through the work incentive, your son / daughter should
have more money available than if not working or working in extended employment
options (sheltered workshops).
Question: Well, that raises another serious concern! My son /
daughter can't loose Social Security benefits and Medicaid. The reality is that
he / she needs the benefits and health care coverage.
The answer is to get informed! You should contact your local Social
Security Administration Office to locate a Benefits Planning Assistance and
Outreach Specialist. This person can sit down with you to explain the basics of
how work will impact your son's / daughter's monthly benefit check. You also
will need more information on work incentives. These incentives were developed
to encourage Supplemental Security Income (SSI) recipients and Social Security
Disability Insurance (SSDI) beneficiaries to become self-sufficient. The IRWE
is just one of the work incentives that can help your son / daughter. Others
include the Earned Income Exclusion, PASS (Plan for Achieving Self Support),
and Section 1619 (a) and (b).
Under Special SSI Payments for People Who Work: Section 1619 (a) and
1619 (b), a worker can continue to receive Medicaid. Under Section 1619 (a),
your son's / daughter's check could be reduced as low as one cent due to work
income, and he / she would receive Medicaid. Eligibility continues as long as
your son / daughter meets the basic eligibility requirements and the income and
resources tests. Under 1619 (b), Medicaid coverage continues even when earnings
become too high to receive a SSI payment but there are threshold levels in each
state. Some states have eligibility rules for Medicaid that differ from SSA's.
This is information that you will need to discuss with a Benefits Specialist to
find out exactly how work will impact your son's / daughter's benefits.
However, he / she can always earn more money working than by just receiving
benefits alone. If you are still feel insecure and unsure after meeting with a
representative, talk to other family members who have adult children with
disabilities who receive SSI and are working in the community. You can also
download a booklet produced by the Social Security Administration, The Redbook,
which provides more information and sample calculations on how work can impact
benefits at
http://www.ssa.gov.
Question: My son / daughter has friends in the extended employment
program. Going to work would mean losing those friends.
Answer: If the opportunity to make friends is important to your
son / daughter, then this along with other key information would be taken into
consideration during negotiations with employers. Every workplace culture is
different. For instance, some are friendly and others are not. To understand
the workplace culture, the person representing your son / daughter would ask
the employer questions and look for signs that the workplace is friendly and
supportive. For example, employees who appear to be enjoying their jobs may
signal a pleasant place to work.
Developing a good fit between a person and the social characteristics of
a workplace is as important as learning how to perform a job. Many people with
significant disabilities report making new friends at work and an overall,
satisfaction with employment. Your son / daughter would have support
establishing relationships with coworkers. Social activities that are available
to other employees would also be available to him / her. Going to work also
does not mean that your son or daughter has to give up friends from the
workshop. They can still socialize outside of the workshop setting. Working
should expand his / her social opportunities and not limit them.
Question: What if my son / daughter loses the job? Can he / she go
back to the workshop?
Answer: Negotiating a customized employment opportunity for your
son / daughter hopefully will prevent this from happening. Rest assured that
staff will work hard to solve any problems that come up during employment and
to address any support needs that could lead to job loss. This includes
re-negotiations with the employer, if necessary, to further customize your
son's / daughter's job.
But, of course people still lose jobs. If this occurs, staff will work
with your son / daughter to find a new job in the community. A new position
will be negotiated based on what is learned in the first job about his / her
interests, work skills and support needs. Remember, our program staff is always
willing to talk with you whenever you have additional questions!
Information for this FAQ sheet came from T-TAP: Training and Technical
Assistance for Providers Project. Contributors for this issue include Dr.
Katherine Inge, Project Director and Ms. Pam Targett, Training Associate. For
additional information, you may contact ODEP at (202) 693-7880 or T-TAP,
kinge@atlas.vcu.edu or (804) 828-5956.
For more information on T-TAP, please visit
http://www.t-tap.org.
|