Childhood Cancer Survivors

Resources

All resources and references mentioned in this book are available on the website and will be routinely reviewed and updated.

Alex’s Lemonade Stand Foundation

Website: www.alexslemonade.org

Search, childhood cancer families

Alex’s Lemonade Stand Foundation (ALSF) is changing the lives of children with cancer by funding impactful research, raising awareness, supporting families, and empowering everyone to help cure childhood cancer. ALSF offers many programs and tools to help families navigate the challenges of childhood cancer.

Federal Social Security Administration (SSA)

Phone: 1-800-772-1213 (TTY 1-800-325-0778)

To find your local office:

Website: https://www.ssa.gov/locator

Help obtaining adequate insurance

Website: https://triagecancer.org

Search, state laws

Passport for Care, Survivor Care Plans by Children’s

Oncology Group (V6, Nov 2023)

Website: https://cancersurvivor.passportforcare.org

Survivors and family can find online updated tailored long-term care plans which should be reviewed with their oncologist or health care provider.

DISABILITIES AND EDUCATION

Administration of Community Living (ACL)

The Administration for Community Living was created around the fundamental principle that older adults and people of all ages with disabilities should be able to live where they choose, with the people they choose, and with the ability to participate fully in their communities.

Website: https://acl.gov/

Locate your state agencies:

Website: https://dial.acl.gov/home

Advocacy Institute

Website: https://www.advocacyinstitute.org/

To file a complaint if you feel your home state is denying or an inadequate response for rehabilitative services/accommodations.

Also find IDEA (Individuals with Disabilities Education Act)

American Childhood Cancer Organization

Website: www.acco.org

Search for: IEP, Education issues,

For free download of book: Educating the Child With Cancer, A Guide for Parents and Teachers, 3rd ed. Edited by Ruth I. Hoffman, MPH; ACCO books and resources: Search, Digital library

American Disabilities Act

Website: https://www.ada.gov/resources/

Search, Disability rights guide

Phone: (800) 514-0301

Cancer Nation (formerly the National Coalition for Cancer Survivorship)

Website: https://canceradvocacy.org

Founded by and for cancer survivors, our mission is to offer resources and guidelines for navigating survivorship and to advocate for quality cancer care for all people touched by cancer.

Center for Parent Information & Resources (CPIR)

Website: https://www.parentcenterhub.org

The central hub of valuable information and products specifically designed for the network of Parent Centers serving families of children with disabilities.

Civil Rights Division, US Department of Justice

Website: https://www.justice.gov/contact-us

Search, File a complaint

Phone: (202) 514-2000

Disability Rights Legal Center

Website: https://www.thedrlc.org

Disabled Adult Child (DAC)

Website: https://www.ssa.gov/benefits/disability

Find your local office, call for an appointment:

Website: https://www.ssa.gov/locator

Phone: 1-800-772-1213 (TTY 1-800-325-0778)

FastWeb – college scholarships

Website: www.fastweb.com

An internet site that matches individual students with eligibility requirement for more than 1.3 million scholarships. It also contains a college directory of more than 4,000 schools with information about admissions, financial aid, and other topics.

Federal Student Aid Program

Website: https://studentaid.gov

Individuals with Disabilities Education Act (IDEA),

US Department of Education

Website: https://sites.ed.gov/idea

Information and resources on infants, toddlers, children and youth with disabilities. Also access to Office of Special Education and Rehabilitation Services (OSERS) and Office of Special Education Programs (OSEP)

Learning Disabilities Association of America

Website: https://ldaamerica.org

When visiting colleges, ask to speak with

Disabled Student Office

Northwestern Mutual Foundation College scholarships

To apply: https://news.northwesternmutual.com/

Program that offers college scholarships to survivors of childhood cancer opportunity to continue their education and pursue college dreams. Twenty-five $5,000 undergraduate awards given each academic year and renewable up to one year or until a bachelor’s degree is earned which ever occurs earlier.

EMPLOYMENT RIGHTS AND BENEFITS

Employee Benefits Security Administration,

US Department of Labor

Website: www.dol.gov/agencies/ebsa

Agency that enforces laws related to COBRA, ERISA and parts of HIPAA and ensures that disabled are entitled to receive healthcare. Phone: (866) 444-3272

Employee Retirement Income Security Act (ERISA)

U.S. Department of Labor, Washington, DC 20210

Website: https://www.dol.gov

Search, retirement or workplace protection for individuals impacted by cancer

Phone: (866) 487-2365

Equal Employment Opportunity Commission (EEOC)

www.hhs.gov/answers/medicare-and-medicaid

call your state insurance department or commissioner

Phone: (800) 669-4000

To file a job discrimination lawsuit, all laws enforced by EEOC, except for the Equal Pay Act, require you to file a Charge of Discrimination with us

https://www.eeoc.gov/filing-charge-discrimination

Family and Medical Leave Act