Advocacy Glossary

Advocacy Glossary of Terms

Advanced Health Care Directive (aka. Living Will) – A legal document that contains a set of instructions for others to follow in the event that you are no longer capable of making decisions due to illness or incapacity.

Affordable Care Act (“ACA”) – An Act passed by Congress in 2010 with the purpose of increasing the number of Americans covered by health insurance and decreasing the cost of health care. One key provision is the individual mandate, which requires most Americans to maintain “minimum essential” health insurance coverage. 26 U.S.C. § 5000A. For individuals who are not exempt and who do not receive health insurance through an employer or government program, the means of satisfying the requirement is to purchase insurance from a private company.

Department of Labor (DOL) – The DOL administers a variety of Federal labor laws, including the Employee Retirement Income Security Act (ERISA).

Durable Power of Attorney – A legal document that designates another person to act on your behalf in the event you become disabled or incapacitated.

Early Intervention – Service provided by every state for children with developmental delays or disabilities from birth to age three. 20 U.S.C. §1431 et seq. (Part C of the Individuals with Disabilities Education Act (“IDEA”)). To determine if services are necessary, there must be a timely evaluation of the functioning of each infant or toddler with a disability. 20 U.S.C. § 1435(a)(3). Following the evaluation, the state must develop an individualized family service plan (IFSP), to describe the services that are needed by the child and family and how they will be implemented. 20 U.S.C. § 1435(a)(4).

Employee Benefits Security Administration (EBSA) – EBSA is an organization within the Department of Labor. EBSA’s mission is to assure the security of the retirement, health, and other workplace related benefits of America’s workers and their families.

Employee Retirement Income Security Act (“ERISA”) – See Self-Funded Health Plan below. ERISA is the federal law that regulates employee benefits, including pension plans and welfare benefits plans such as health insurance. 29 U.S.C.A. §§ 1001 et seq.

Essential Health Benefits – The benefits which insurers are required to provide coverage for under the ACA. The Essential Health Benefits package encompasses these 10 benefit categories: Ambulatory patient services; Emergency services; Hospitalization; Maternity and newborn care; Mental health and substance use disorder services, including behavioral health treatment; Prescription drugs; Rehabilitative and habilitative services and devices; Laboratory services; Preventive and wellness services and chronic disease management; and Pediatric services, including oral and vision care. The states have flexibility in determining the Essential Health Benefits. Many states do not consider medical foods an essential health benefit.

Estate Planning – The process of anticipating and arranging for the disposal of an estate. Estate planning typically attempts to eliminate uncertainties over the administration of a probate and maximize the value of the estate by reducing taxes and other expenses. Guardians are often designated for minor children and beneficiaries in incapacity.

Family and Medical Leave Act – This Act entitles certain eligible employees of employers covered by FMLA to take unpaid, job-protected leave for specified family and medical reasons with continuation of group health insurance coverage under the same terms and conditions as if the employee had not taken leave. 29 U.S.C. 2601, et seq.;

Fully Insured Health Plan – A plan where an employer contracts with an insurance company and the insurance company administers and the claims. Fully insured health plans are subject to state and federal law, including state law insurance mandates.

Guardianship – A legal guardian is a person who has the legal authority and duty to care for the personal and property interests of another person who is incapable of caring for his or her own interests due to infancy, incapacity, or disability.

Katie Beckett Waiver/Medicaid Waiver – A waiver that enables severely disabled children and adults to be cared for at home and be eligible for Medicaid based on the individual’s income and assets alone.

Medicaid- Federalhealth program for families and individuals with low income and resources.

Medical Food- See definition here.

Medicare – Medicare is the federal health insurance program for people who are 65 or older, certain younger people with disabilities, and people with End‑Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant, sometimes called ESRD). Toqualify for Medicare benefits, a child must be disabled according to Social Security Administration definitions for at least two years, or have End Stage Renal Disease, a kidney condition that requires dialysis or a kidney transplant. Medicare will pay for hospital and doctor’s services provided for the treatment of those conditions, as well as general medical care, hospice and home health services as necessary. Children who are disabled or have ESRD are only eligible for Medicare if their parents meet certain requirements.

Office of Civil Rights – A sub-agency of the U.S. Department of Education, whose mission is “to ensure equal access to education and to promote educational excellence throughout the nation through vigorous enforcement of civil rights.”

Parent Technical Assistance Center Network – Nationwide network of centers that provide resources and assistance with education advocacy for children with disabilities.

Protection and Advocacy Agencies – P&A agencies have the authority to provide legal representation and other advocacy services, under all federal and state laws, to all people with disabilities (based on a system of priorities for services). These agencies devote significant resources to ensuring full access to education for people with disabilities.  

Self-Funded Health Plan – Most private sector health plans are covered by Employee Retirement Income Security Act (ERISA). These health plans are where the employer pays claims with its own funds and an insurance company solely performs the administrative work of processing claims. Self-funded health plans are often utilized by large corporations and government entities. The employer has sole discretion as to which services will be covered and is only subject to federal law. These plans are not subject to state law insurance mandates. ERISA plans are enforced by the Employee Benefits Security Administration (EBSA).

Social Security Administration – An independent agency of the United States federal government that administers Social Security, a social insurance program consisting of retirement, disability, and survivors’ benefits.

Social Security Disability Insurance (“SSDI”) – Disability benefits for adults disabled since childhood. The SSDI program pays benefits to adults who have a disability that began before age 22. It is considered as a “child’s” benefit because it is paid based on a parent’s Social Security earnings record.‑05‑10026.pdf

Special Needs Trust – A legal document that allows for the placement of an unlimited amount of assets in trust for the benefit of a disabled or chronically ill beneficiary. Assets in a properly drafted special needs trust are not countable assets for purposes of qualification for certain governmental benefits, such as SSI or Medicaid.

State Children’s Health Insurance Program (SCHIP) – SCHIP provides health insurance to children from working families with incomes too high to get Medicaid, but who cannot afford private health insurance. SCHIP provides insurance for prescription drugs and for vision, hearing and mental health services in all 50 states and the District of Columbia. Your state Medicaid agency can provide more information about SCHIP.

Supplemental Security Income – The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. A child younger than age 18 can qualify for SSI if the child meets Social Security’s definition of disability for children, and if his or her income and resources fall within the eligibility limits. The child must have a physical or mental condition, or a combination of conditions, that result in “marked and severe functional limitations.” The child’s condition(s) must have been disabling, or be expected to be disabling, for at least 12 months; or must be expected to result in death.

Special thanks to Christine Schanen for her assistance in preparing this material.