advocacy, using your personal experiences as a cancer survivor and joining with other survivors to help change the laws and healthcare rights/regulations to provide you and other survivors what you need to live the healthiest and most satisfying life possible

504 Plan, special educational accommodations outlined in Section 504 of the Federal Rehabilitation Act (1973) to address the needs of children who do not meet the full criteria of “disabled”

Americans with Disabilities Act, federal law that prohibits many types of job discrimination by employers, employment agencies, state and local governments, and labor unions based on an individual’s actual disability, perceived disability, or history of a disability. In addition, most states have laws that prohibit discrimination based on disabilities, although what these laws cover varies widely. Any employer with 15 or more workers is covered by the ADA

Family and Medical Leave Act (FMLA), protects the job security of workers in large companies who must take a leave of absence to care for a seriously ill child, medical leave when the employee is unable to work due to his/her own medical condition, or for the birth or placement of a child for adoption or foster care

Comprehensive Omnibus Budget Reconciliation Act (COBRA), a federal law that requires public and private companies employing more than 20 workers to provide continuation of group coverage for 18 months to employees if they quit, are fired, or work reduced hours

Canada Health Act ensures coverage for all Canadian citizens and non-citizens who require medically necessary (as defined by provincial and territorial health insurance plans) hospital and doctors’ services

cancer predisposition syndromes (CPS), a group of inherited genetic disorders that increase an individual’s risk of developing certain types of cancer. These syndromes are caused by mutations in specific genes, which can be passed down through generations, leading to a higher likelihood of cancer occurrence in affected families.

age of majority, the age at which a person is granted by law the rights and responsibilities of an adult; full age

comprehensive health insurance plans (CHIPs), insurance plans offered by the majority of states to individuals at high risk because of their physical condition or medical history

Employee Retirement and Income Security Act (ERISA), a federal law that prohibits employers from discriminating against an employee for the purpose of preventing the employee from collecting benefits under an employee benefit plan

job coach, a person who helps those with disabilities adjust to a new workplace, learn work skills and rules/regulations, and how to handle workplace environment and stress

fundamental justice, the term used in Canadian legal system that means the same as due process in the US legal that insures all citizens are entitled to the same treatment by law

group health insurance policy, a policy that provides lower rates because of the large pool of employees, these policies offered by large corporations or government agencies

General Educational Development (GED), a high school equivalency program by which a student receives a GED diploma by passing 4 subject areas tests in language arts, math, social studies and science. Passing these four tests demonstrates the student has the same knowledge as a student attending 4 years of high school.

group health insurance policy, policy that provide lower rates because of the large pool of employees, these policies offered by large corporations or government agencies

Health Insurance Marketplace Exchange, health plan shopping and enrollment services through websites by which families or individuals can compare policies online and buy individual health insurance plans

Health Insurance Portability and Accountability Act of 1996 (HIPAA) also known as the Kennedy-Kassebaum law, allows individuals to change to a new job without losing coverage if they have been insured for at least 12 months

independent mediator or hearing officer, a third party to settle disagreements between parents and school representative

individual education plan (IEP), a special educational plan for a physically or cognitively disabled child that is agreed upon between parents and the school system to assure that the student will be taught the same things as other students: reading, writing, mathematics, science, history, and other preparation for college or vocational training. The plan is in writing and approved/signed by both the parents and the educators and specifically states what, how and when the student will be taught and all specialized services––such as small classes, home schooling, speech therapy, physical therapy, counseling, and instruction by special education teachers.

IEP diploma, a high school diploma that demonstrates the student has completed all of the objectives set out in his IEP for graduation

job lock, survivors feeling trapped in a job and not changing jobs for fear of losing healthcare benefits for themselves and families

job coach, a person who helps a person learn work skills, rules/regulations, and how to handle workplace stresses. In some cases, the job coach may accompany the survivor on the job for a period of time or only make periodic visits to see how the survivor is getting along and resolve any problems.

late effects, physical, psychological or social problems/issues that arise after treatment and cure of cancer as a result of the treatment received and can be immediate or develop/occur years after treatment completed

limited conservatorship, a court proceeding where a judge gives a responsible person, called a (limited conservator), certain rights to care for another adult who has a developmental disability. A limited conservatorship is specifically tailored to the individual’s developmental disability and grants only specific powers to the conservator, preserving as many rights for the conservatee as possible.

Medicaid, a joint federal/state insurance program that covers approximately 36 million individuals, including children, the aged, blind, and/or disabled, and people who are eligible to receive federally assisted income maintenance payments like Supplemental Security Income (SSI). The federal government administers the program through the Department of Health and Human Services. Each state has an agency that administers Medicaid in that state (sometimes called the Department of Social Services or the Department of Public Welfare)

Patient Protection and Affordable Care Act (ACA) of 2010, is a comprehensive health care reform law enacted in March 2010 designed to achieve near universal, affordable health coverage. The law’s provisions create premium and cost-sharing subsidies, give new rules for the health insurance industry, create a new system for buying health insurance plans, and protect survivors from detrimental insurance industry practices, such as denying coverage due to a preexisting health condition.

pro bono, free legal aid

sheltered workshop, jobs that are in segregated facilities where disabled people go to work for very low sub-minimum wages (e.g., sorting recyclables, light assembly work) and are meant to be temporary workplaces that prepare them for finding and working regular jobs

survivorship program or clinic, a program designed to provide long-term, multidisciplinary follow-up of successfully treated patients at the original treatment center or by a team of healthcare professionals who are familiar with the potential late effects of treatment for childhood cancer. Teams include a nurse coordinator, pediatric oncologist, nurse practitioner, social worker, and psychologist. The team has a close working relationship with specialists such as cardiologists, endocrinologists, orthopedic surgeons, and other specialists whose services are needed by some survivors.

survivorship, the point in life when your cancer treatment ends and the journey into the future begins

survivorship visits, annual or more frequent visits to your team of healthcare professionals that are familiar with your medical history and cancer treatment and potential late effects of treatment and help monitor your health and well-being and help with any issues/concerns you might have

supported placement employment, provides people with severe disabilities the appropriate, ongoing support necessary for success in a competitive work environment. These are jobs within the community such as grocery clerks, office helpers, and factory workers. Often the survivor works with a job coach for a period of time.

special education advocate, person with special training and expertise in helping to get appropriate education services for children with special needs and who attends all meetings and give advice about legally mandated services and how to obtain them

transition-to-work services, services or training that help adults with disabilities transition from school into the job force such as teaching skills needed for interviews, filling out applications, money management etc.