Words to Know (Special Health Care Needs Glossary)
A
achievement/ability discrepancy: a way to see if a child is performing at their best or if something like a learning disability is holding them back.
acquired brain injury (ABI): an injury to the brain that was not there at birth. This includes aneurysms, strokes, brain infections, and accidents that result in a brain injury. This does not include damage to the brain from conditions like Alzheimer's disease or Parkinson's disease.
activities of daily living (ADL): everyday activities like eating, dressing, using the toilet, bathing, getting in and out of bed, and moving around. Doctors or therapists measure a child's ability to do ADLs without help to determine their need for assistive devices (tools) and other aids.
adaptive behavior: the skills people learn to take care of themselves and act appropriately in social settings. This includes things like dressing, cleaning, making friends, following school rules, social skills, and personal responsibility.
adaptive physical education: tools, teaching, and other strategies that allow people with disabilities to take part in gym classes, sports, and other activities.
advocate: an advocate acts or speaks in support of another person in order to help create or change rules, laws, or policies that affect the other person.
age-appropriate: right or suitable for a child's age or age group.
age norm: the age when kids most often learn a new skill or behavior. For example, the age norm for learning to walk is from about 9 to 17 months old.
Americans with Disabilities Act (ADA): a United States law passed in 1990 to protect people with disabilities from discrimination and to improve their access to services.
assessment: a test or exam that collects information about a person's health or development. The results of an assessment can determine if a child is eligible for certain programs, services, or treatments.
assistive technology: tools, devices, and aids designed to make everyday tasks easier for people with disabilities. Examples include bath seats, computers that read text aloud, weighted utensils, and pillbox reminders.
at risk: more likely to have trouble in school, become ill, or have a developmental delay. Many things can put children at risk, including poverty, neglect, and undiagnosed health conditions.
attendant services: programs designed to give people with disabilities the personal care and support they need to live on their own and be a part of the local community.
augmentative and alternative communication (AAC): methods of communicating that don't rely on speaking for those who have trouble using spoken language.
B
baseline: a measure of someone's skills or abilities taken before they start services or instruction. The baseline is compared with measurements taken later to tell how well services or instruction are working.
beneficiary: a person named in a will, trust, or other agreement who will get financial benefits upon the death of the holder of the agreement.
C
care coordinator: a professional who helps kids with a disability or illness and their families connect with the right resources and services.
case manager: a professional at a hospital, insurance company, or doctor's office who works with patients to develop a treatment plan and make sure all needs are met. Case managers are usually trained nurses or social workers.
categorical placement: grouping students with disabilities together based on the type of disability they have.
chronic: a lifelong condition, one that lasts for a long period of time, or one that happens again and again.
cognitive: having to do with conscious mental activity, such as thinking, understanding, learning, and remembering.
co-insurance or co-payment: the amount a person with health insurance must pay for covered health and dental services if the insurance doesn't cover 100% of the costs.
customized employment: a personalized approach to employment, where a person with a disability and their employer select particular aspects of a job for that person to do based on personal strengths and needs.
D
developmental disability: a condition that negatively affects a person's physical or mental abilities, including learning, language skills, and behavior. To be considered a developmental disability, the condition must start before age 22 and limit a person's ability to learn, live independently, use and understand language, earn a living, or be in charge of their own actions and care.
developmental screening: a preliminary test to see if a child needs more testing for potential developmental delays. All children are screened for developmental delays. If a doctor has concerns about a child's development based on this screening, the doctor will ask for an evaluation by a specialist.
durable medical equipment: medical devices that are used over time in the home to help someone with day-to-day activities. This includes things like crutches, wheelchairs, blood sugar monitors, hospital beds, and oxygen tanks or other breathing equipment.
E
early intervention services: a process that helps identify children with disabilities or developmental delays in the first years of life and provides them with the care they need to treat or prevent the disability or delay.
Early and Periodic Screening, Diagnosis and Treatment (EPSDT): the part of Medicaid (U.S. government-funded health insurance for people with low incomes or limited resources) that applies to children and adolescents. EPSDT gives prevention, diagnosis, and treatment services to low-income kids and teens under age 21.
estate planning: instructions in the form of a will or other agreement about what is to be done with money, assets, and other matters when a person dies. For parents of a child with a disability, this should include plans for a child's care and treatments, living arrangements, and financial matters.
F
facility-based institutional care: long-term care that takes place in a hospital or other health care facility instead of a home or apartment.
free appropriate public education (FAPE): the right of American children with disabilities between the ages of 3 and 21 to receive free education and accommodations designed to meet their individual needs. FAPE is promised to all children with disabilities under the Rehabilitation Act of 1973.
functional life skills: learning that focuses on helping a person with a disability develop practical skills for living, such as cooking, shopping, doing laundry, and socializing.
G
government benefits: help, in the form of money or services, that a person gets from the local, state, or federal governments. With health care, government benefits usually refer to Medicaid, Medicare, or a state-administered Children's Health Insurance Program (CHIP). Non-health care benefits include Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).
guardian: the person legally assigned to care for and be responsible for a child if the child's parents die before the child becomes an adult.
H
health insurance: a type of insurance that helps pay for medical needs, such as doctor's visits, prescription drugs, surgery, and hospital stays. The insurance policy can reimburse the insured person for expenses or pay the doctor, pharmacy, or hospital directly.
health surrogacy: a person, known as a surrogate, who is permitted to make health care decisions for an adult who can't make decisions for themself. A person becomes a surrogate by default.
home care: health care or assistance given to a person at home through a nurse or home health aide.
home health aide: an individual who provides care in someone's home. Home health aides are trained in how to provide personal care, including bathing, dressing, feeding, and other daily routines.
I
inclusion: the belief that people with disabilities should have the same access to services, activities, and opportunities as everyone else. For example, people with disabilities learn in regular (not separate) classes whenever possible and work in places designed to accommodate their disability.
individualized education program (IEP): a written plan that outlines the educational goals and support needed for a student with disabilities. The IEP is agreed upon by the student's family, teachers, school administrators, and others.
Individualized Family Service Plan (IFSP): a personalized plan for young children with disabilities that outlines health and wellness goals and describes the steps that will be taken to reach those goals. The IFSP is developed by the child's family, doctors, and early childhood educators.
Individuals with Disabilities Education Act (IDEA): a 1977 federal U.S. law that helps guarantee no-cost educational services for children with disabilities.
intellectual disability/intellectual disability disorder: a disability that limits a person's mental capacity (learning, problem solving, reasoning) and adaptive behavior (language, social skills, daily activities). An intellectual disability starts before the age of 18.
M
mainstreaming: when kids with disabilities spend time learning in regular classrooms and joining in activities alongside their peers without disabilities.
managed care organization (MCO): a public or private health insurance group that makes health care services available to people enrolled in its programs. Managed care helps people get the care they need in the most cost-effective way.
Medicaid: a state-run health care program that gets aid from the federal government to help people from low-income households or households with limited resources pay for medical costs. Medicaid is a form of health insurance. People need to meet the eligibility requirements to get Medicaid coverage in their state.
medical home: primary care that coordinates complete, continuous, and accessible health care no matter where care it delivered.
mental age: a measure of a person's ability to think and reason as determined by psychological or educational testing. The level of the person's intelligence is expressed as the age at which most people would think and reason at the same level. (For example: "She's 16 but has a mental age of 7.")
mental health disorder: a condition, such as depression or schizophrenia, that has a negative impact on a person's thinking, feelings, mood, or behavior and affects the person's ability to function in society or meet the demands of everyday life.
motor development: changes in children's ability to control their movements. Gross motor development involves the large muscles in the legs, arms, and torso. Fine motor development involves smaller muscles, like those in the fingers, toes, lips, and tongue.
O
occupational therapy: therapy that helps a person develop fine motor skills and learn daily living tasks such as writing, using eating utensils, and dressing.
ombudsman: a person who investigates complaints and helps to settle them for a consumer.
P
paratransit: a door-to-door transport service for people with disabilities who can't ride regular public transportation alone.
patient-centered care: a model of health care in which patients and their families work closely with doctors and other health care workers to make sure that the patient's medical needs are met in a way that is timely, cost-effective, and meets the patient's preferences.
people-first language: speaking in a way that puts the emphasis on the person instead of on the condition. This way, a condition is thought of as something a person has, not who a person is. (For example: "a child with disabilities," not "a disabled child.")
physical therapy: therapy that helps a child develop control of the large muscles involved in tasks like walking, sitting, standing, and lifting.
placement: this can refer to the setting where a student with disabilities receives lessons or other educational services based on the their individualized education program (IEP). It also can refer to "residential" placement, when a child lives in a place other than their natural home. This can be a group home, school, treatment facility, or other place.
power of attorney: the legal right of a person (known as the "agent") to make decisions for an adult who cannot make them due to disability, illness, or distance. The adult who is handing over these powers must agree to this arrangement. Power of attorney rights can be short-term or long-term, and can be taken away at any time. The adult giving over this power still keeps their legal rights.
prescribed pediatric extended care (PPEC): facility-based care for children and teens through age 20 with special needs that must be prescribed by a doctor. Prescribed pediatric extended care centers provide medical care, therapy, and other services for up to 12 hours a day for children who need it.
R
regression: the loss of learned skills. For example, many kids regress over summer vacation or another time when they are away from instruction.
resource placement: special education placement for less than half of a child's school day. This is also known as a "resource room."
respite care: a service that offers short-term care — from a few hours to a week or more — for a person with disabilities so the person's regular caregivers have time off.
S
self-advocate: a person with disabilities who makes their own choices and decisions. Self-advocates speak up for themselves and others with disabilities.
self-determination: the belief that people have the right to direct their own lives and will develop more fully if they have the option to make their own decisions as informed consumers, including the right to fail. For people with disabilities, this means having real-world experiences, setting their own educational and life goals, and playing an active role in accomplishing those goals.
seriously emotional disturbance: a disability category that covers children and teens with emotional and behavioral disorders that interfere with their relationships and functioning.
service companion: a person who helps someone with disabilities with non-medical assistance, like social and recreational activities and safety, but does not provide personal care.
service coordinator: a professional who helps people with disabilities and their families find the services they need and keep their care organized and monitored.
service provider: a person, organization, or business (for example, a hospital or childcare center) that provides assistive or medical services to a person with disabilities. The service provider can offer day programs, live-in aides, or residential services.
skilled nursing care: care that needs to be given by a registered nurse or a licensed practical nurse under the supervision of a registered nurse, doctor, or therapist to be safe and effective.
social and emotional wellness: a positive attitude and outlook marked by good self-esteem, confidence, and the ability to accept and express feelings.
Social Security Disability Insurance (SSDI): a government benefit for adults with disabilities who have worked in the past and paid into the government's Social Security program. The amount of the benefit depends on how much and how long they paid into Social Security. This benefit can be used for any expenses and there is no income limit for eligibility.
special education services: education and therapy services provided to children with special needs at no cost to parents. The amount of services varies and depends on each child's needs and educational goals. Parents must ask for educational testing to see if their children are eligible for services.
special needs trust: a financial trust, created by an estate or elder law attorney, that allows someone with a disability to save money that does not count against his or her eligibility for government benefits like Supplemental Security Income (SSI) or Medicaid. Real estate, life insurance policies, and retirement savings all can be put into a special needs trust for someone with a disability, while still allowing the person to get government benefits.
speech-language therapy: therapy that diagnoses and treats communication and speech problems.
Supplemental Security Income (SSI): a government benefit for anyone with disabilities who has little to no income, including children. SSI covers basic monthly expenses like room and board, clothing, and food. Eligibility is based on a person's income and assets.
support services: services that allow students with disabilities to go to school. Support services include special transportation, medical services, and therapy.
supported employment: a program that allows people with disabilities to work in a particular job while receiving support to help them complete the tasks of the job. Support can include specialized job training, job coaches, transportation, assistive technology, and other services that allow the person to get to and do the job.
supported residential environment: a place where a person with a disability lives, outside of their natural family home, and gets help with activities of daily living (ADLs), managing treatments, and learning life skills. This place could be a group home, apartment, shared housing, or other housing.
T
transition planning: a planned process for preparing a teen for early adulthood and beyond. This includes finding new doctors or other health care providers, taking a more active role in managing one's health care, and deciding where to live and work, if applicable.
trust: a legal agreement in which a person or entity holds the right to manage property or assets for the benefit of someone else.
trustee: the person responsible for managing a special needs trust for a person with disabilities after the death of that person's parents or legal guardian.
U
universal design: a practice that seeks to design buildings, products, and spaces so that they are accessible to everyone equally, including people with disabilities.
V
vocational rehabilitation: a state-specific program that helps people with barriers to employment, including disabilities, get the training and support they need to get or keep jobs.
W
waiver: for people with disabilities or chronic medical conditions, a request from their state to the federal government to remove restrictions on the way Medicaid money is spent. Medicaid waiver programs help provide services to people who would otherwise be in an institution, nursing home, or hospital so that they can receive long-term care in their own communities.
will: a document that specifies what will be done with a person's money and other assets after death.