achievement/ability discrepancy: a way of telling if a child has
learning disabilities by asking parents and teachers if the child is living up to
acquired brain injury (ABI): an injury to the brain that is not
there at birth. This includes aneurysms, strokes,
infections of the brain, 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
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 special needs to take part in gym classes, sports, and other
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 special
needs 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.
baseline: a measure of someone's skills or abilities taken before
he or she starts 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.
care coordinator: a professional who helps kids with special needs
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 special needs 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 his or her employer select particular aspects
of a job for that person to do based on personal strengths and needs.
developmental disability: a condition that negatively affects
a person's physical or mental abilities. 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 his
or her 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.
early intervention services: a process that helps identify children
with special needs in the first years of life and provides them with the care they
need to treat or prevent developmental disabilities or delays.
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
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 special needs, this should include plans for a child's
care and treatments, living arrangements, and financial
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 special needs 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 special needs under the Rehabilitation Act of 1973.
functional life skills: learning that focuses on helping a person
with special needs develop practical skills for living, such as cooking, shopping,
doing laundry, and socializing.
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.
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
himself or herself. A person becomes a surrogate by default. So, only when a person
with a disability does not give this power to someone else in writing (for example,
via power of attorney) can someone become a health surrogate.
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.
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 special-needs) 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 who spend time with the student away from
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.
mainstreaming: when kids with special needs 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: an approach to health care
that keeps everything about a patient's medical self — his or her medical history,
dealings with insurance companies, treatment schedule, referrals to specialists, etc. —
in one place. These records can be kept at doctor's offices, clinics, or hospitals
and stored in files on a computer or within an electronic
health record (EHR), or in paper folders.
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
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.
occupational therapy: therapy that helps a person develop fine
motor skills and learn daily living tasks such as writing, using eating utensils,
ombudsman: a person who investigates complaints and helps to settle
them for a consumer.
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 his or her 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.")
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 his or her
individualized education program (IEP).
It also can refer to "residential" placement, when a child lives in a place other
than his or her 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 for himself or herself 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 his
or her 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.
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 in order to let
the person's regular caregivers have time off.
self-advocate: a person with disabilities who makes choices and
decisions for himself or herself. Self-advocates speak up for themselves and others
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
special needs, this means having real-world experiences, setting their own educational
and life goals, and playing an active role in accomplishing those goals.
seriously emotionally disturbed: a disability category that covers
children and teens with emotional and behavioral disorders.
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
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 younger than 67 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.
therapy that diagnoses and treats communication and speech problems.
Supplemental Security Income (SSI): a government benefit for adults
with disabilities (or the elderly) who have little-to-no income. SSI covers basic
monthly expenses like room and board, clothing, and food. Eligibility is based on
a person's income and in order to remain eligible, the person cannot have more than
$2,000 in assets.
support services: services that allow students with disabilities
to go to school. Support services include special transportation, medical services,
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
supported residential environment: a place where a person with
a disability lives, outside of his or her 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.
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.
universal design: a practice that seeks to design buildings, products,
and spaces so that they are accessible to everyone equally, including people with
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.
waiver: for people with special needs, a request from their state
to the federal government to remove restrictions on the way Medicaid money is spent.
will: a document that specifies what will be done with a person's
money and other assets after death.