Cancer as a Disability: Resources Serving to Help and Support Cancer Survivors and their Family Members Catherine A. Marshall, PhD, CRC Sharon R. Johnson, MS, CRC

GETTING STARTED Resources for Helping with Initial Treatment Issues American Cancer Society Patient Advocacy Foundation Lance Armstrong Foundation Gilda’s Glub Worldwide

BACKGROUND Cancer is a devastating problem that pervades all aspects of people’s lives. Cancer is terrible to deal with while it is happening, but it can also leave you with emotional and physical problems that last long beyond the original treatment. When these problems – fatigue, chronic pain, depression, weakness, confusion – start to take over your life, you can become very disabled.

You may need to find someone to help you figure all of this out if you can’t do it yourself. There is a lot of information about cancer and it is very complicated. Don’t be afraid to ask for help. Depending on the help you need, like using the Internet, this could even be a child or grandchild. Help using the Internet could be from a friend, a neighbor, or even from a stranger you meet at the library.

If you need help understanding how disability law applies to you, the best help could be from a professional you are working with such as a:  VR counselor  social worker  tribal advocate  an attorney you or someone in your family knows.

Resources for Helping: Cancer as a Disability Americans with Disabilities Act (ADA) Vocational Rehabilitation Independent Living

Americans with Disabilities Act: (ADA) This is the name for a federal program that sets rules for employers about disabilities. Part of the ADA is about making sure that places where people work are easy to get into, move around in, and use the bathroom and working space, even if you are in a wheelchair, or use crutches or a cane, or have trouble with stairs and small doorways. Another part of the ADA is about making sure that employers do not treat you badly or unfairly because of the illness you have, or because of the problems you have due of your illness, or the treatments you need.

Vocational Rehabilitation: (VR) This a very old program that is available in every state in America. It gets its money mostly from the federal government, and some from the state governments. People who have a disability and who are unable to get or to hold a job because of that disability are given many kinds of assistance to get a job, keep the job they have now, go back to their old job, or get trained to go to work in a new kind of job. There are also many Tribal VR programs that are run on reservations, and have these same services for tribal members living on or near that reservation.

Independent Living: (IL) Many people with disabilities need special help to get back to their lives, to their jobs, to the way they used to do things before they became disabled. The Independent Living program was created to help them get counseling, and find people who have the same kind of problems so they can help each other.

How These Programs Can Be Of Help To You

How These Programs Can Be Of Help To You Americans with Disabilities Act (ADA)

The ADA is a law that can be very helpful for people who are trying to keep the job they held before getting sick. It can keep employers from firing or laying off workers who are disabled and need to use sick time because of that. The ADA can help employers know how to change their entrances and work spaces so it is the best arrangement for a disabled worker. If an employer is building more or different space for their business, it will give them plans and rules so the new space is easy for people with disabilities to use.

Unfortunately, there are some things about the ADA that can make it less useful to people who are disabled. The courts have supported an employer’s right not to hire someone with a history of cancer, for instance, whose condition, the employer fears, might increase a company’s health insurance costs. The ADA only applies to businesses or employers that have more than 15 employees, and if you work for a very small business they do not have to do what the law requires. In addition, there are no clear penalties for not doing what the ADA says, so some employers just ignore it.

The ADA does not apply to Indian Reservations or Tribal Governments. Even so, the ADA can help you when you are asking an off-reservation employer to make what are called “reasonable accommodations.” Reasonable accommodation means that there are sometimes very small things an employer could do to make working easier or possible, and many employers are most willing to do these things because they are small cost or no cost things. rest during the day work 5 or 6 hours per day earlier or later start or end time lighter duty job for awhile.

How These Programs Can Be Of Help To You Americans with Disabilities Act (ADA) Vocational Rehabilitation

VR is one place you can go to get help to work with your employer to accomplish kinds of things we just mentioned, or to find a new job and have the employer understand ahead of time how some small change in they way things are done at their business could make it possible for you to work there. Once you are found eligible, you will work with a counselor on a one-to- one basis to find out what is best for you, what kind of job you need and want, whether you need to learn new skills, and how you will get this done.

Your counselor will help you put together a plan for going back to work, then will help you get that plan started and finished. Even after you go back to work, or find a new job that is right for you, your counselor will stay with you to be sure things are working out, and help you ask your employer for changes that could make working easier for you. After you are working successfully for some months, VR will close your file. However, if things change and you need their services again, you can go back for more help.

How These Programs Can Be Of Help To You Americans with Disabilities Act (ADA) Vocational Rehabilitation Independent Living

Independent Living helps people stay in their own homes. IL can help people find the people and programs they need so they can live as independently as possible for as long as possible. If you are in a wheelchair, and cannot get into or out of your home, ILcan help you find a way to get a wheelchair ramp built. As their name says, they help people be independent and make their own choices for as long a possible.

Native American Cancer Education for Survivors (NACES) Quality of Life Tree

Working It Out: Your Employment Rights As A Cancer Survivor Available from the National Coalition for Cancer Survivorship that is available to by going to s/essential/employment.aspx#top